When you feel like hope is gone!

Look inside you and be strong???

I am finding that very difficult at the moment!

How many times can you be given hope and let down? I feel like a deflated balloon! There is only so much fight a person has, I am usually the glass is half full sort of girl but right now it feels like it is full of hot air!

I do not nor think I will ever understand the British Council/Goverment! I bet if I was well off I wouldn't have this trouble! Or even lived down south! Maybe I haven't shouted loud enough or spoken to the right person yet but I have now run out of options! The Mayor, MP and press are yet to return my calls! I thought as much, post-election they are never really interested!

Anyway! The inclusion panel met on the 24th of May and I rang up the SEN at NC Council on the 25th at 2pm on my break at work! He had the cheek to say he had been trying to call me this morning! I had no missed calls on my mobile, but he may have been trying to ring the house phone, although I doubt it as my dad and my sister were there all day with Amira! He explained that the panel have confirmed Amira can go ahead with being statemented! Yes you heard right she can now be statemented! We are only at the first hurdle!

In the meantime, their Special Needs School (TB) is full and won't have a space until Sept/Oct! In the meantime they 'may' put Amira in an ARC school (TV) with an additional 1:1 support worker until then and change her schools when the time comes in Oct! I told him that would not be happening! Whatever school she goes to will be her school! No chopping and changing! How can I expect a 5 year old to understand that, let alone an autistic child, I know you hate school but you are going to a new school with people you don't know and have a someone else there to work with you 1:1 who you also don't know. Then after a term you will go on holiday for 6 weeks and then go to a different school again with all new people and start all over again!!!!!!

NO! I am not doing it! I'm not setting her up for certain failure! He then asked what I suggested and I asked about NT council? They have a Local Authority Special Needs School that is just 5 mins away from my door (BH) which is also Autism specialised. I have worked with the school over the last few years in connection with my job and they have always been great! They are fantastic with the kids and seem to have an amazing bond with them as well as encouraging them and helping them develop! On top of all that, I have a trust in the school, that they would do their best by my daughter and help her to be the person I know she can be. He agreed that it was a Local Authority School and as long as they had space AND he spoke to his counterpart at NT Council it shouldn't be a problem! He would call me back on Tues (29th May)!

Hooray! I let out a huge squeal in the smoking shed and a friend who knew what was going on got the whole conversation relayed! She was so pleased for me! I was getting somewhere! No one wants to send their child to a special needs school but if you have to you want some choice! After all when you pick your child's mainstream school you get a choice of 4!!! Why is it different for us that have to look at Special Needs Schooling? Anyway, I was ecstatic! I rang BH as I had to speak to them anyway, I am organising an event for the 9th of June and they are holding a stall I needed to clarify a few details!! After I went through business I asked cheekily if they had any spaces in their school for Amira? The lady I spoke to knew a bit about her already from previous conversations and she listened as I abbreviated the whole situation although she said she couldn't do anything she told me that there was space!!!! As I hung up I allowed my self to get even more excited! Was this it, had I done it???? I thought what else did he need? Contact his counterpart at NT council! I had already spoken to him! He was lovely and he tried everything to get things moving before, he also had been active in ringing NC council with me to get them to respond! He already knows Amiras backgound! He would definitely help! That's it! She is in! Phew! I was near tears with joy! I practically skipped through the store and found my friend working, I told her all about it and she was so pleased. She had seen me near breaking point earlier on that day. I just couldn't stop crying and thought this day would never come. I would wait until Tues and when he rings to confirm I will tell him I will take her there on Wed morning myself and will stay with her as long as they needed.

Nothing like getting ahead of myself was there! I waited by the phone on Tues and by 11am I started ringing the SEN at NC Council! Meeting: left message, 12:30: away from desk, left another message, 1:50: meeting another message left, 3:00: still in meeting, 3:45 Meeting he would get back to me! I told them I was happy to hold until he got out of his meeting! 24 mins later. He took my call!

Hello Mrs Salih!! ( aggrrrhhh!) it's Miss Williams I corrected him, my daughters surname is Salih! He would not be sending Amira to BH!! You could have knocked me over with a feather, the wind had literally been taken out of my sails! He then told me that if he sent her there it would be for assessment only and they would have to give her a full term there. This would then delay the statementing process so it would be best to surge on through with the statement as planned! The next meeting would be on the 30th of July and that is when all departments will have to have their paperwork in by! Then the panel would meet again by the beginning of September and assign Amira a school within the NC Council District!

*Gobsmacked*

I asked again as I hadn't really heard properly! My brain had kind of sunk, I had Amira and Tariq running around screaming and my Auntie had just arrived with some home-baked pie and scones for us too! Did he just say meeting again on the 30th of July, look to start in September??? No, surely not!

Yep, he did! He said BH would probably not take her anyway as Amira didn't have a statement yet! (in other words he hadn't even asked!) Slow down the process??? I have seen snails work at a faster pace than NC Council! He said this was definitely the best course of action and by the first meeting in September Amira would have a school assigned! I asked what if I didn't agree with the school they chose? I really don't want her that far away! Amira does not travel well and during rush hour there in the morning and on her way home would be an hour at least each way! He told me I could always appeal the decision when it was made in September, however, this would delay the process further, appeals can take a further 26weeks!

I hung up and as the information sunk in, I am speechless! I told my dad and my Aunt what had been said. My aunt is 70+ and was furious! 'That is not right! Get on the phone to the papers, ring the radios they cannot do this'. My dad is just so angry at the system, that his granddaughter is left out and let down. He and my whole family have paid into this system for years, all worked never claimed benefits and look what you get! NOTHING! My dad saw the disappointment in my face and didn't push the subject as I think he knew I would explode! When my mum and sister came in I told them too! They too don't understand how this can be right!

I am now at a complete loss! Amira is now only sleeping for about 30-60 mins at a time at night sometimes having more short sleeps throughout the day! She has no structure or real stimulation and doesn't like to leave the house! Tariq is getting later and later for school each morning as he doesn't understand why his sister is not coming too! Fighting with me to take her too. He loves school but doesn't understand why he goes and she doesn't. Amira doesn't fight as much right now and as she swings on her playground in the garden (my dad has built what looks like a park in the garden to keep her busy!) Amira will spell words for me and always asks me to count her down from 10-1 blast off and push her to the moon! M-O-O-N!

My mum has had confirmation of her hospital date and gets her foot operated on mid June and we are waiting for my dads date for his surgery on his knee too! That will be difficult to cope with but as always with our family we will just get on and cope! Some how!

I have now given up hope, resigning to the fact that in the councils eyes my daughter is just a number, they as well as the MP's, Councillors, Mayor and The Press simply don't care! It doesn't benefit them. The elections are over and the story is obviously not news worthy! If I was a celebrity then I'm sure it would be different. Although I'm sure they didn't have the issue of getting their child into the right school! It is amazing what money can buy! Amira is just a number in the system and will be dealt with when they see fit, in their time! Regardless of what this is doing to her. Amira has already been out of school for 5 weeks! It will be 19 weeks before the Sept term starts and she won't be starting straight away! That is nearly 6 months my child is expected to be excluded from school! If this isn't discrimination I don't know what is! I have even looked into the possibility of moving home into the NT Council catchment! Ha! To start I probably could not cope alone, second I most definitely couldn't afford it, unless I gave up work and sponged off the Goverment! (I really don't want to do that I love my job, it gives me a sense of worth and an adult environment I can escape to!) third, get this, my mam and dads house is too big, I couldn't get a council house! I could be sneaky and just put down a relatives address that lives in NT Council district? Nope, I couldn't firstly, I am not very good at lying I have telltale grin/smirk, secondly, the whole process would have to started all over again! Third, when Amira started whichever school  they pick the escort/transport people collect from that address and take them to school! See I have thought it through! Not like me at all!!

I am now completely lost. Do I get in touch with citizens advice/solicitor?? What could they do anyway? Do I sue the Council as I have been advised to, for discrimination, and see how quickly they get her into a school then? Do I lobby the Houses of Parliment? Try the press again? Contact the MP again? I truly believed that the council and MP's actually worked for us, the people! I thought we paid our taxes for them to look after our schools and health! I was obviously mis-informed or very naive!

Please Help Me! What do I do now?

Getting somewhere

Well time is almost on us now for Amira's case to be put before the inclusion panel. No word yet from MP or Mayor! Yet we have over 111 like on FB and over 1500 page views world wide! I will keep you all posted of anything further! The only thing worth noting is that Amira's sleep is now worse as she has nothing at all to keep her stimulated through the day!

Me

Me:

I suppose I best tell you a little bit more about how this has made me feel too.

You can pretty much tell from this blog so far that this is a difficult journey. The day I found out I was pregnant I had mixed feelings. I wasn't married, the first in my family to have a child out of wedlock, my partner was a black Muslim too! Never one to do things by half am I?

I had been told at 17 that I would never have kids as I had ovarian cysts and had them and an ovary removed and the other was heavily pitted and scarred! I went on to have several operations on my womb and bits, a cervical cancer scare, and enodometriosis was another particular problem I had too. Never believing I could have kids I always stayed at a distance and was happy to be the fun auntie and completely spoilt my nephew, bought him everything I could think of, played games and adored him but never changed a nappy! Blurgh! I remember having to once and was physically ill!!! So, after 18 home pregnancy tests I finally went to my GP and after the first blood test said no, the second said yes! I was delighted yet terrified! Friends I had at the time were all natural mothers, destined to be from a young age. They wouldn't have a clue how I felt...so I just withdrew.

I had a awful pregnancy with Amira, bad SPD and very low blood pressure! I eventually went on the sick from work as I kept collapsing! Practically everyday! I was told not to drive, to take it easy! I did far too much of that and gained so much weight it was pathetic! I had numerous scans when pregnant as they thought Amira may have had Downs Syndrome and also have a possible bowel problem. I wouldn't know for either until the birth! It started to drive a wedge between me and my partner, he lost his job at the early stages of my pregnancy too so it was all down to me. I assembled the cot, bought all the clothes went to all the appointements alone, or with my mum. I even insisted on my mum to be at the labour as I knew he didnt know and wasnt really interested in any of the pregnancy. This really hurt but, when she was born perfect I was elated! Like any other new mum struggled at first, I wrapped her up in cotton wool and never put her down! She was truly spoilt rotten. The first grand-daughter for my parents too. My ex has no family in this country and I clung to mine for guidance! Trust me, he really didn't have a clue, he never once did a night-time feed and never ever changed a nappy. He would say old fashioned, I would say otherwise! For lots of reasons, I was pregnant with Tariq within 9 months, not even having Amira into a routine yet! I knew this was going to be hard! I had said all through my pregnancies that I was going to be a tough mummy, strict routines, especially for bed! AS IF! You have to laugh though, right?!

I was fortunate that my Nana got to meet and hold my daughter before she died. I was very close to her and a lot of family members have said how much I am like her! She always had her hair styled like the Queen and was a very stoic woman! My other Nana was also a very strong woman and had battled all of her life! I have some very big shoes to walk in! My mum managed to do it so well and my sister can do it! They were all fantastic role models and you would never have heard or hear any one of them complaining if they were in my place. Well, one nana would never approve of me writing this, believing "you keep your own council!" After she died when Amira was 6wks old, my Grandad would spoil Amira rotten, buying her new dresses and coats etc on a regular basis. However, he got seriously ill, when Amira was 2yrs old and Tariq was 6 months, I left work to look after him and my mum and dad helped me financially whilst my sister helped me with my kids. Within 6 months he lost his battle and I regressed even further.

I knew it was time to make a change I lost loads weight, my skin was a lot better (I have bad Psoriasis too) and I found a job in a stress free environment! LOL! No such thing is there! I love what I do though and I am very fortunate to have a very understanding employer. I also have some of the best work mates anyone could ask for. I have had to leave work early so many times, it is ridiculous.

I would take the kids to nursery and shoot straight off to work. I would cry all the way to work as I hated leaving Amira when she cried. I would wipe my face before I got there and have a stash of make up in the car to re-apply before I got out, have a quick  tab and plant the smile on before I walked through the doors. After all my job was to help people with real problems, to raise money for their causes. The fact Amira only slept for 2 hrs and had a few "issues" was nothing in comparison to what some people were going through. I raise a lot of money for several charities and feel very proud of myself and have a great sense of achievement!

I remember helping one particular charity and spoke to the lady running it, the charity was for children with special needs. She would tell me about why she was involved and always invite me, Amira & Tariq down to join the group. I always wanted to go but felt like a fraud. I had no diagnosis, how could I go and talk to these ladies who had a diagnosis for their children. What if Amira really hurt one of their kids? I work for a company that is raising money for them how can I then go along and use their facility too? I eventually got over it and I took Amira along to their Christmas party and we didn't even get through the door. They had a pantomime on and Amira ran screaming through the corridors as it was too loud! How embarrassing!! She then threw a hissy fit because she wanted to go and I was so embarrassed that the ladies running it could see my daughter biting, kicking and scratching me. Cupping her hands over ears and screaming. They seemed to take it in their stride. We left immediately, I haven't dared to go back yet. Strangely, even though I now have Amira's diagnosis and I have been recommended to contact them on various occasions I still haven't done so. Mixing personal and business?? I would hate to think that anyone would think I favoured one charity over another.

I often get asked why my eyes are so red at work and have an excuse already prepared. Slept in my contact lenses! Slept!!!! That would be nice! If only they knew! I wore more make up than a drag queen just to look half human! Those that knew and said " I don't know how you do it!" my prepared answer was always the same! " you get used to it!" in a way that is true, but some days it catches up with you. The alternative answer is "there a lot of people that are so much worse off!" this is definitely true, somedays it doesn't feel like it though. Most days you just feel very alone and very down. As weeks turned to months, months have changed to years! Still no improvement, I lived in hope when friends would say to wait until full time school, that will tire her out and she will sleep. I lived in fear of her starting school. What if she was as bad there? I expressed all the concern to the nursery and HV and to the school when they came out to visit her. They said it would be fine. That set my mind at rest, if only for a brief time. 3 days into school and I was called in! I knew instantly what this was for. After speaking to the SENCO I broke my heart and begged for help. Amira was not allowed to stay full time at school and was to start 15 mins before the other children and finish at the same time of nursery class. Mondays and Tuesdays were the worst. I felt even more alone as I never got to meet the parents properly. Maybe if I had of they would have been able to talk to me instead of making complaints to the school! Everyday I would carry Amira in kicking and screaming and do the walk of shame coming out as she was kicking off in the class room. I would usually have been crying so would put my head down and avoid eye contact, walking as quickly as I could. Amira is always very unpredictable and on some days could be a "delight" teachers would tell me! Still not at a level anywhere near her peers but would maybe do a little bit of work and sit nicely in assembly, even playing well with others. The first time Amira was given "Star of the Day" my heart burst with pride! It made me full of hope that there may be a chance of change! I was wrong, as I was told next day from school that she hadn't been perfect at all but they were trying to reward the good behaviour she did have and teach the other children that Amira was not the "Naughty Girl" as she had now been labelled! That snapped another little bit of my heart right there.

There are nights I get so annoyed and start shouting "lie down" "get to bed!" " what's wrong with you!" I feel incredibly guilty. I went through a particularly bad time and everything was getting on top of me and I even went to leave my job. Handing my notice in, they kept delaying putting the ad up for my job and a 4 week turned into 4 month and I came out the other end. During that time my skin broke out to the extreme and I cried every night! Losing my temper at the slightest thing, I would cry when no one was looking and my smoking and comfort eating increased 10 fold. I have no social life. I don't go out. I did with new friends from work, but couldn't really relax as I knew when I went home I would have to take over and look after Amira! I knew she would still be up when I got in! Friends could get mortal drunk and fall home. I didn't have that luxury and never let myself have more than a few! I usually drove or organised an event and would host all night! Easy option really, and a perfect excuse why I couldn't drink!

When Amira went for her first grommets at 18 months I wept outside on the phone to my sister and as they wheeled her back from surgery she was standing up on the bed screaming the whole ward down and all I could do was hold her and try to soothe her. I thought that was the worst feeling. How wrong was I! Next we did a sleep study and was admitted to a children's ward. We went in for 6:30pm and as I filled out the paper work and we were shown to our room I tried the best I could to explain the uniqueness that is Amira. I tried to explain that Amira didn't sleep. I don't think they really believed me, the night shift nurses certainly did by the next morning. I was still walking around the hospital inside and out at 4 am! A new environment to go to sleep,  I knew it was going to be difficult! When we arrived I carried her straight upstairs to the ward and they started strapping her up they got the chest straps on but as they tried to put the nasal tube on Amira started to wake up! Amira had already been awake 36 hrs at that point! I was exhausted! They decided against the nasal tube. I fell asleep and when I woke up at 7 Amira was not in the room! I panicked and ran straight out into the ward half dressed. Amira had been up since 5:30 and playing with one of the nurses in the play room. They said they thought I needed the sleep. They were right! We quickly dressed and before breakfast I took Amira home. The next time we were scheduled to go to hospital was for her adenoids and tonsils out and some new grommets put in, for weeks before I gave Amira a hospital gown, started tying her hair up away from her ears and bought her a peppa pig hospital bag complete with bandages, stethoscope, syringe (she knew what that was for, administering medicine!!) and a variety of other bits! I hoped this would help her adjust to staying overnight! I brought in pillows, duvets etc from home and loads of her toys to settle her down she had her iPod and my iPhone and I brought chargers just in case! After I finally got her changed, she refused the gown, PJs instead, we walked down to theatre. They gave Amira the gas and she went limp in my arms. I placed her on the cold hospital trolly, gave her a kiss and walked away told to come back in 1hr. Go get something to eat they said! When I walked away I started sobbing, tears streaming down my face. I cried because I knew this was the last medical hope I had to fix what I thought was a medical problem! I prayed to every God out there! Please let this work! Two weeks before I had seen Amira's peadiatrician for the first time and Amira had been up for 2 days prior to his appt she fell asleep in my arms waiting to see him! When I spoke to him he seemed to understand and prescribed me melatonin as the phenagen the GP had given me did nothing but keep her awake longer and even more hyper! I had to go back in 3 months after her surgery.
Whilst she was being operated on I rang her dad. I didn't want him there before as I knew if she saw him she would know something was up! As I took my phone out there was a message to say her was already there. Not one to show emotion at all let alone in public he instructed me to wipe my face and calm down. He wasn't being cold although I thought that at the time. I now understand it is just his way of coping with things. He failed to acknowledge the importance of the operation. Again his coping strategy. All the way through he has struggled to understand what is happening and waits for an explanation from me and is happy for me to do everything. He says he is sure I am doing the right thing. Great confidence boost but I really needed some support and maybe someone else to take over the calls whilst I looked after Amira or vice versa. Never mind, he tried and I am learning to stop blaming their dad for not helping as I never let him from the beginning I just took over. Only occasionally asking for help. I could never question that he loves his kids, it's just the priority list he has and our place on it.

Anyway, back on point, when Amira came round this time the nurses pulled me straight into the room as Amira was awake already and she had pulled her tubes out! There was blood all over the sheets and floor and she grabbed hold of me so tightly, screaming and crying, terrified. All I could do was hold her and soothe her once more. She finally settled after a shot of something and we were taken back to the ward after waiting in recovery for 4 hrs. Whilst there I saw a small child being resuscitated and luckily brought back to the ward, I was just thankful that it wasn't us! Amira was expected to eat or she wouldn't be going home! She refused their food and drink that night and next morning! I knew she wouldn't eat what they asked her too. I was told to force the medicine in and had nurses pinning her down as we tried to get it in! I was constantly being told you must get it in to her. I explained that I usually put her meds in her drinks so she doesn't realize but they said it had to be administered in one go! Scratchy foods like crisps would not usually be an issue but Amira didn't want to do things on their terms, only her own! Eventually after nearly 48hrs in hospital, Amira ate a bag of crisps and they were satisfied to let her come home. I had sat all night in the chair beside her just in case she tried to do a runner again. She did 4 times through the night. The nurses looked at me like I was such a bad mum. Other children were trying to sleep. I did know that! I was doing my best!
Amira got a lot of bugs in her first year of school and I freely admit I kept her off at the least thing towards the end. I didn't want to force her to go to school when she already hated it so much. I knew she had already left scars on teachers and children in her class. It could only get worse. What if she seriously hurt someone or got out of their eyeline and ran off? Amira could reach all of their locks I had seen it first hand. Amira also had no concept of danger, I and several others had seen her run straight out of school, out the gate, and across a main road! Cars beeping and me screaming. I had given chase with Tariq in my arms but she was too quick for me. Tariq however was still sent regardless to school as he would cry if he missed a day! He was covered head to toe in chicken pox and still be crying to go in! True what they say "you never get 2 alike!"

As weeks progressed I knew Amira had not been "fixed" yes her snoring had stopped but that was it!
The autistic assessment came and I thought Amira had behaved very well! To the point that I thought, bloody typical!! When you want a professional to see her at her worst she behaves really well. Next, peadiatrician appointment a few days later, she was really good for him too. She played with his nursery nurse on 1:1 and loved all the attention. He made me feel like it was the school not teaching her as she needed. If she had 1:1 Amira would be fine he couldn't see a problem! More hope for me. I then started fighting for 1:1! Ringing every dept I could to get it arranged. I don't know of me getting on my little soap box ever did help get it but it felt like it. The autistic assessment diagnosis was supposed to be back to me within 2 weeks to give me the results I rang and rang getting the run around every time, finally after the full 8 weeks allowed they came back with their diagnosis of Autism & ADHD, my life stopped. I thought after how well she had behaved and the peadiatrician telling me everything was fine that they would say I was nuts! Amira was fine! I began in un-picking all the images I had built up for her future! Some one said to me it was like a bereavement process, although I think that is a bit much I can see where she was coming from. I was asked if they wanted me to contact any family member so they can explain it to them! I told them I needed it explained to me first!

1, Is there a cure? A. No
2, Will she get better? A. Not likely although with the right environment things may improve.(Hence why I am fighting so hard for the right school)
3, What will happen if I died? A. Amira will always need assisted living and she would be taken care of by state funding! (I literally couldn't speak!)
4, Will she ever understand? A. Probably not, the fact Amira talks is a plus point and they can build on that.
5, Will she ever have children? A. Who knows what the future brings but it's unlikely Amira could ever give consent!
6, How? Why? What did i do wrong? A. We don't know and nothing!

The questions just couldn't form in my head. Since then I have built practically a book of more questions that I and Dr Google are working through.

Life just isn't the same since I found out. Amira is no different from the day before, to the day after her diagnosis. I had already had her removed from school a few days prior to it anyway!
But, somehow I had convinced my self that they would say yes she has ASD but only slightly and she may need 1:1 full time or even perhaps an ARC school for a short while but would eventually get back to mainstream. I think all along I have lived in denial and just wanted to see the best. Although I always accepted Amiras difference I thought her strengths out shone them. The CAMHS team that had run the diagnostic report were very nice but nothing can prepare you for what you hear. I sat in my car and cried so hard my face was bright red and no noise would come out of my mouth. I sobbed for a good half hour and then rang her dad to tell him too. He knew from my voice and wanted answers I couldn't give. He still is looking for answers and I don't know who can tell him them. He is still yet to tell his family. I drove home and collapsed into a puddle of sobs when I saw my mam and dad! They told my sister and passed the message round my family. The day I told my cousin she came up that night and just give me a hug. For years she had offered to look after Amira so I could have a break, some time to myself. She is a very accomplished mum and I always knew she would be in safe hands but I have always been terrible at letting go of control. Always not asking for help and insisting I can do it myself. How many other mums have to have help??? I saw it as a sign of weakness. I was wrong! There are mornings when I have left the house without brushing my teeth never mind my hair! I forget things, I shout, I bribe my children, I allow them to watch too much tv, my children don't have a bed time routine and my daughter does dictate a lot of what we do. But, we are coping/surviving everyday as it comes. I want my children to be happy, that is all, not asking too much! Is it?

The right school could be a turning point for Amira! That is why I am fighting so hard. Pouring my heart and soul out to be viewed by others that may hold some insight. Help get my daughter the education she needs! Know of any treatment available that may help! Understand that although we feel alone we are not! There are so many mums like me out there desperate for help and being turned away by GP's or HV's, being passed from dept to dept, being made to feel like we are the ones that have a problem. If you knew how many times I have been suggested to go on anti depressants by medical professionals. Do they not realise that pills are not the answer. Getting my daughter the help she needs is all I need.

I read a poem that says a lot about how it is, there is no author listed but the person who wrote it truly knows how I feel.  It goes like this:

To my Autistic Child


Where are you this moment,
My darling young child.
Where have your thoughts taken you?
Where are you this moment,
My darling young angel
Is there something you need me to do?


Is there a way I can touch you
Is there a sign I should know
Is there a path I could follow
That would help you to learn and to grow!


If I could reach down inside you
If I could cuddle your heart
If I could take the mystery away
Would you know we never will part?


Where are you this moment my child
Where are your thoughts taking you?
Please know I am right here beside you
No matter what life takes us through!

Waiting game

I have spoken to the head of SEN at NT council, a very nice man and he has spoken to his counterpart at NC. Unfortunately, I have gone as high as I can with NT now and they have done everything they can, all be it not in the "correct/procedural" order. They can now no longer assist. NC council rang to say that until the inclusion panel meeting on the 24th of this month nothing more can be done. Amira will have to stay at home until an appropriate school can be assigned. Now, my question is just because the meeting is the 24th will she get a school by the following week or will this be drawn out until beginning of the summer holidays and she won't be placed until the next school year? I suppose only time will tell. I am aware that all NC SNS are full at the minute as well as neighboring councils as the goverment keep closing them!

Did anyone else see the BBC News yesterday and the interview with Sarah Teather MP Minister of State for Children and Families.

http://www.bbc.co.uk/news/education-18061348

Basically, they agree that the process of statementing takes too long as some kids are being "labelled" un-necessarily! Apparently they are going to put the power back to the parents! Allowing us to make the choices and also give us the purse strings to hold! Ok, in theory this sounds great, in practice I think this is going to be a very daunting experience for some. Personally, I would welcome it, however, having done the calls round the schools and had the guided tours, I still don't know which one would be best, not that I have any choice! Any would be good at the minute! But, at least the are recognizing that there is a problem!

I also received an email back yesterday from the MP's secretary! I don't think he will be able to do much to be honest. I don't just want somewhere for Amira to go during the interim period until they make up there mind where she can go but, I also don't know what else to do for now! Do you think a nanny would take on the challenge? I know a private nursery won't?

Well that is it about the system for now until I get any more info..

So, I thought I would share a bit more about the family side of it and how this affects all of us!

Tariq: He is a very caring, and affectionate little boy and clings to me probably more than he should. He is not frightened of Amira any more, though he used to be. They were never left alone together as Amira was very unpredictable. Tariq hit all milestones early and is very intelligent. At 3 he writes all the letters of the alphabet and can talk your ear off. Just like his mum! He was often compared at school to Amira as she was only in the class above him. He is a lot older than his years and comes out with some much older comments like "Ok, Amira calm down counting to 3 now, 1,2,3 now it's all ok! What happened?" I stress he is 3 years old! He has been bitten, kicked, clawed (and has scars) pulled, pushed, had toys broken, the lot. However, he is still very protective of his older sister. Tariq sleeps in my bed as when Amira wakes up in the night she used to go in and scratch or bite him in his sleep to wake him up. His sleep gets interrupted at least 3 times a night. Yet he still gets up every morning with a smile on his face looking forward to go to school. He loves it! However, he is a bit confused at the moment to why Amira doesn't go! He used to love it when the 2 classes used to join up and he would love to show off his sister to the other classmates. Amira loved seeing him too and would play so nicely with him on her part it was a friendly face, an ally that didn't judge or pick on her and wouldn't leave her out. In fact, would encourage her to play with his friends and group. Tariq was so proud on these days and lately teachers have said his bottom lip drops when the door opens now and he forgets for a second that she will not be joining him. He is a very well rounded young man, polite and creative too. He like I said is very close to me and hates to be separated except for school.

Amira & Tariq's dad: although I am not with him, they are both still very close to their father. Amira doesn't have a concept of time and doesn't understand that it is a week between visits. He is absolutely devastated and is struggling to understand what Autism and ADHD means. I will be honest it is not the easiest to explain.

Nana & Grandad: they have opened up their home for me and my kids to come back. They have already brought up 2 kids and should be enjoying their older years, spoiling their grand-kids not living with them. My Mum & Dad are second to none! I would have been at rock bottom years ago if it wasn't for them keeping me up. I rely on them for everything! Amira often sleeps for only 2 hrs in a 24hrs period. It is not humanly possible for me to stay awake that long I work part time and my parents collect them from school, make meals, clean uniforms, help me bathe and wash Amira's hair (a 2 man job!), keep Tariq away when Amira is having a fit. My dad has taught Amira how to use a computer and sits with her to read her books and do her letters. I have known my parents to be up with Amira right around the clock on several occasions! I can tell you that when Amira was still a baby and I had been up 2 days straight I rang them at 2 am as I couldn't get her to sleep. Within 5ins they were at my front door picked her up put me to bed and told me to sleep. I remember being in hospital (with me I have been admitted on several occasions) my parents have picked up the kids and took it in their stride. We have the family motto "we all just stick together and get on with it!" my parents have paid for me and my children with not only financial help but with a kindness that I am in a debt that no money could repay! They have the patience of saints when their home has been destroyed bit by bit and possessions that they have worked long and damn hard for have been broken in a flash. Large HD tv, £50 a roll wallpaper that Amira drew on from one side to the other. Me with a cotton wool stick and bleach trying to remove it! ( That doesn't work!) doors pulled off hinges, dvd players broken, lights pulled off walls, stair gate pulled from wall and thrown down stairs, doors pushed into walls, locks up the door looking like Fort Knox, computers having every key picked off, mobile phones smashed, nail varnish remover poured into the bath and burnt all the enamel off. This is to name but a few! Most parents would be saying enough! My parents answer quite simply "is Amira ok? It's only a thing, it can be replaced, she can not!"

My sister: she holds the same attitude as my parents, we all help each other. She has been there for me through thick and thin. Amira holds a very close bond to my sister and they completely adore each other. Amira always has a smile for her auntie and allows her to wash her hair, they dance and be silly and play dress ups. Amira will do a lot of things with her that she won't with others and Amira feels very special when she gets to go out with her by herself. My sister has seen her fair share of bruises and scratches with Amira as have her 2 children too. She has never kept them away though, as I'm sure some people would and if anything has had the most relaxed approach to Amira, even from facing the nursery she would say try her best to chill me out by expressing that Amira isn't the first or the last child to bite, scratch, kick etc…. She has come with me to take the kids out, if she hadn't I would never have had the kids out at all as I can not manage on my own. I remember when we went to the coast and visited a sealife centre. Amira ran round in 2 mins and was done! We had a 2x 2year olds, a 3 year old and a 7 year old. As we went back to the car, parked along a main road directly opposite the sea front. Amira ran off, no concept of danger Amira sped off and it took my sister a good 50 yards to catch her just before the main road. If that had of been just me I wouldn't have caught her whilst carrying a 2 year old. My sister has also included me and forced me to get out of the house as I was turning into a recluse. Losing friends I had for years and turning inward. I literally lost my personality and my own identity. If it wasn't for her I would still be sitting in the house on my own. Crying to myself and not asking anyone for help. She pushed me to talk to HV and GP's, she included me with her friends when she went out and helped me get back to the woman I once was. I suppose it is true what they say. There is no better friend than a sister. I know I don't have one and would be lost without her.

Update

UPDATE:

After my visit to PH school (Independent SNS) on Friday, which, as I  was advised by the council, asked about their weeks assessment program, I was told yesterday that NC council would not provide funding for Amira to attend an independent SNS at all, not even for the assessment.

If I take a step back, I can understand? Why would they provide the funding to go to an independent school when they have their own!

I really want to get across that I do not blame Amira's school at all, they have tried their very best to get through the red tape of council processes, the teachers all did their best with the limited knowledge they had of special needs. They filled forms out and applied to NC council in the way they thought it was to be done.
I do not blame NT council as they are trying their best to now get all of their information over to NC Council. Again, how can I blame NC council, when up until now they were completely un-aware of my daughter's situation as she was attending a NT school!

When one department says they have sent paperwork and another says it hasn't been received or that it wasn't filled out correctly and it has had to be returned and started again! Who do you believe? Where do you go next?  All I know is this,  my daughter is 5yrs old and now not getting any form of education, through no fault of her own or, might I add, mine. In most usual cases the council/education welfare team would send the child back to the school they came out of until another could be assigned, this, however, is not an option with Amira...so what now?

I have now contacted my local MP and today the Mayor of NT, if these 2 figure-heads cannot help, I am truly at a loss at who can. Surely I am not the only parent that lives on a border between 2 councils and their child has attended a school that belongs to a different council than where they pay their council tax to?  So, why is my child being ignored and left out? I am not asking for any kind of special treatment or for my daughter to be pushed to the top of the list. I am not insisting on any particular special school, independent or otherwise. I just want Amira to be placed in the right environment for her, to get an education and mostly for her to be happy. I really don't believe that this is asking too much at all.

Initially, I started this blog as a way of venting my anger, of documenting the steps I have taken so far and as a way of getting help and suggestions from friends. It has certainly helped me do that, but in doing so is also apparently helping others too and that, in turn, has really jeered me on! Hopefully, this will help other parents in a simillar situation and prevent them from having some of the same problems we are. I know this is nowhere near the end of our battle, but hopefully we are getting somewhere?

All I ask is that the process of getting children into the right school needs to be looked at. Maybe I should take this to goverment next and start a petition for a shake up? Or maybe go to the local press...or even to the national press?

Soft plays

As promised, I told you I would come back to soft plays!

The reason why they make me scream?? Other parents.

Now, we all know they are an expensive day out, well 1-2 hrs out! When Amira would finish school early due to her 'flexi-agreement' we would go almost everyday! It's even quite easy when they are quiet! Day times are usually pretty empty as long as there were no parties on! However, when there are other kids there disaster will inevitably strike!

I have been told, by other parents, that my daughter shouldn't be allowed in soft plays at all and told what kind of mother am I to allow a 'child like that' to be left un-supervised! I don't know about you but I cannot catch up to her on a climbing frame! Surely, all kids come across a fight in a soft play at one time or another, Tariq and my nephews certainly have and Amira is by no means an angel, I am more than well aware of that! Usually, at a soft play the worst she will usually do is scratch someone when pushed, however, provoke her by not letting her play with the ball too or by pulling her hair and she will retaliate!

I have since got a badge that says "I'm not naughty, I'm autistic!" but, I'm in two minds about actually using it though...is it a good tool or another way of segregating my child? After all the whole Star of David stitched on clothing comes to mind! (extreme example I know!) I also know that places like the Autistic Society have cards they give to parents to hand out on such occasions asking others to be patient! Do I keep her away? Only go to Special Needs Sessions? Not all soft plays do these! In fact, not many at all! Ring round your locals to find out! We have a fantastic charity up here called Pathways 4 All that run sessions and are currently building their own! How fab is that! But, I'm still not sure if it is best for my daughter to be kept apart, away from other children...she is a 5yr old little girl who just wants to play...she's not a monster!

Most soft plays will advise that they do not discriminate any child from their play area (which is only right!) however, the majority do not hold seperate sessions for users with special needs and advise just to come during quieter times if you feel the need. I found that when it came to school parties etc soft play ones were more likely to allow Amira the freedom to play without the noise of a disco, not that Amira ever went to school parties. We went to the very first and my sister took her as I was at work. It was a disco and she had her party dress on and handed the present over well. They were early and the first to arrive as this allows Amira a better chance of settling and for others to join her rather than her walking into a big group. She played well and liked dancing on her own but when it came to the party games she didn't quite get the gist of it! My sister was under strict instructions not to let her out of sight and she didn't, also aware to take her home as soon as she started to get too excited or at any sign of distress! Amira had no incidents at all and they left within the hour, not even staying for the food. However, the following Monday the mammy mafia at school already had it that Amira had ruined the party by terrorizing other children. I spoke to the mum of the child who organized the party and was told that was certainly not the case and Amira had been a delight! Aggrh! There were some instances when other children would do things to antagonize Amira to get her to react or even do something and blame it on her. Amira soon became a very easy scape goat as she never verbalized what had happened and had an automatic response of "Sorry" to everything. This was seen by teachers especially that Amira knew that she had done wrong, I tried to explain that this was a learnt response and she really did not understand. She just knew that if she didn't say sorry she was stopped from doing what she wanted!

MP email

This is a copy of the letter I have drafted to send to my Local MP - I have removed all names etc.
Dear MP,

You may remember, I previously spoke to you about getting my daughter (Amira ***** age 5) funding for 1:1 support from NC Council as she attended a NT school. After your contact with the council we received the funding within 2 weeks.

Since then after 1 week of 1:1 at full-time the school went into crisis mode and advised me that they were unable to cope with Amira anymore. They even had teachers lying on top of her to control an outburst! The school contacted the Educational Welfare Officer and she agreed, Amira was removed from school on Wed 25th of April. The school then assured me they had started the statementing process and I had signed all the paper work Mon the 23rd April. I asked what would happen next and have been led to believe that the statementing process can take 6 months. My daughter now has fear of school and I do not like the suggestion from NC council that they will assign (with 11 weeks from receipt of paperwork! Apparently as of 30th March they still have not received.) a temporary school. Amira received her diagnosis on 27th April as Autistic and ADHD. They have suggested that an ARC school would not be able to handle Amiras aggressive outbursts and as NC Councils temporary solution would be an ARC, I would be setting my daughter up for yet another failure. The next school my daughter joins I want to be the right one and the final step. However, 11 weeks - 6 months out of the school environment is simply not acceptable. I have started to take matters into my own hands as I am sick of being ignored and dismissed by professionals or council. I have investigated special needs schools in the area and visited some too. TB School that is in NC district, all be it the opposite end of the city to where I live, I have been told by them is full. BH School in NT apparently don't believe they are the right environment, BD School, I am still awaiting them calling me back after a meeting they were holding Friday morning! PH School although an independent SNS have been extremely helpful. They have given me a tour of their facilities and have given me a sense of trust back in the school system. They have told me that they would create an individual program for my daughter and although at this present time do not have a peer group for Amira her class does have other girls (a rare thing in special needs schools apparently) they are only 2 years older than her. On the plus side though they are looking at a potential 5 more students at age 6, this would be a great environment for my daughter. As Amira would need the individual program getting her in now would be critical and may mean by September term Amira would be ready for the class room setting and would start with the new class. The school have also advised that the week long assessment that they usually run would not be appropriate for Amira and they would need to recieve funding from NC Council before a placement could be considered.

In short, please help my daughter get the education she deserves and is entitled to. After all if I kept my child off school for this amount of time I would expect to be heavily fined and arrested! Why in reverse is it different? I do understand the council have their "processes" however have they not heard of emails? There is surely a much quicker way of sharing information between all of the departments involved. As you had so much influence before, hopefully post election you will be just as helpful. I have recently started blogging my situation and already have 400+ readers all sending me emails expressing their disgust at the situation and some asking for help and support too. They and I all wait your response.

Yours sincerely,

Taking matters into my own hands

Amira was removed from school nearly 2 weeks ago and I met with the educational welfare officer before I did! It was a hard decision made easy! I was tired of Amira going to school everyday crying, the part time hrs she was given, the lack of access to the curriculum she was getting, the outbursts she would have every day! The other parents complaining to the school about how they wanted her removed. The amount of phone calls I would receive every week to pick her up early, the fear she had every night of where she knew she was going the next day it felt like she was getting bullied by me to go, her teachers for not complying to their rules, kids for being different and their parents for what I can see as their ignorance.

To me my daughter happiness means everything. Since she has left I have had less aggressive outbreaks, smiles, cuddles and kisses everyday and she plays all be it in her own role plays so happily! I however unlike the school do not have 30 other children to look after at the same time I just have 1 other and I do it 24/7 with no breaks and a part time job! As far as my work is concerned they have been fantastic, so supportive and understanding!

Once the EWO came out to speak to me and I explained the situation at school, she agreed that this school was the wrong environment for Amira. I had no diagnosis at this point yet after a talk to the school Amira was picked up from school within the hour and brought home. The EWO I am dealing with were from NT and have been trying to contact N Council to get her a suitable school, even they are getting the run around. Diagnosis revealed Autism & ADHD! Recommending a special needs school as an ARC couldn't handle Amiras aggressive outbursts! . However, that is not enough for the council, to have a Dr recommendation, they need all the other depts to have their say too and this process can take up to 6 months for the "Statement" when the school will be assigned.

I do not believe this is right! 6 months out of school??? My child is 5!! The law I believe states " every child over the age of 5 is entitled to adequate full time education!" now let me just pull up a few points here!

1, if I invited you for an adequate meal I can pretty much guess you wouldn't turn up, I want better than adequate

2, Amira has not accessed any of the curriculum at school so far. At all! The school and other specialists have acknowledged that!

3, If I chose to keep Amira off school for 6 months I would be arrested, fined and deemed a bad mother!

4, Amira had never accessed full time schooling until 1 week before she left as the school could not cope with her and I was asked to sign a "flexi school agreement" from very early on, this proved to be an exhaustive process for me as when she finished I would take her to soft play or the park to help tire her out! It didn't, but it helped to give me 5 mins!

As far as soft plays are concerned I will come back to that topic another time as they make me scream!!

Ok back on topic…. 6 months out of a school environment that although Amira is loving will make it impossible for me to get her back into school! Here is a little example of how she feels about school. I went to pick Tariq up from nursery (attached to her ex-school) she saw some of her old classmates and screamed "help, my friends, they are coming to get me and take me back! Help mammy, I frightened, my teacher coming!" she sobbed as she hid behind a tree!

Tell me if your child did that what would you assume! She is scared of schools? I did! Amira has a lot of sensory needs and she still uses dummies to self soothe. The school insisted within the first few weeks these were to be removed. She did, but always kept them in her pocket so she knew they were there. Her Red coat is a biggy!! She hates taking it off, a lot of children with autism like the weight of a heavier coat etc. Of course, I had no diagnosis then but I knew she saw this as a sort of security blanket and often, in fact, always refused to remove it at school! This again was forced every morning and often resulted in a physical altercation! Personally, I believe in picking your battles! Would it really have affected anyone in class if she kept her coat on????? Next, her first week at school and I paid for dinners! I was soon "advised" against this as Amira could not get the hang of the whole getting a tray, choosing dinner, getting knives, forks etc and not being able to have a pink cup every day? Really, they couldn't have got her some lunch and given her that pink cup? Any how, she went on packed lunch and has had the exact same lunch every day on some days had none at all because she had an outburst and missed the lunch period she went the entire day without food! I was really not happy about that at all! If she had an outburst usually I was called to come and collect her. Yet, if she didn't eat all day no one thought that I should be informed and asked to collect her then???

All Amira ever wanted was to be included with the other kids, unfortunately, she was often excluded from things. The nativity was the worst.she was not allowed to take part as she couldn't really understand what to do and wouldn't follow direction! Awkward situation for the teachers too I'm sure! However, when she went to the hall to watch her class practice she was told to sit and watch! When she saw her classmates playing the instruments she leapt up grabbed one and started to try and join in! The instrument was then removed from her and she was sent back to her seat! She persisted (wonder where she gets that from!) and leapt up again, again the instrument was taken off her and now she got aggressive. She was removed from the hall and sent back to the classroom on her own. This was witnessed by a member of CAMHS who rang me and told me what she had witnessed. I ended up keeping her off over the Christmas period as I couldn't bear the thought of her being excluded like that. Same when there was a trip to see a pantomime, they didn't think Amira could sit for it and they didn't have enough adults to watch her too they thought it was best for me to keep her at home that day! Amira is an escape artist I know that but, that really hurt me.

Anyway, I am off point again. NC Council are now considering sending Amira to a temporary school until the statementing process is complete. This will not be her permanent school. Probably an ARC. CAMHS have already told me this type of environment will most likely not be adequate for Amira. Do I really want to set my daughter up for yet another failure??

I have now started digging and on Friday I went to visit an independent Special Needs School (SNS) ok it is not what I wanted but, who would ever choose a SNS?? It was in a lovely setting, very secure building (important) as Amira would run from school and go straight across a main road without looking! (Amira does not understand the concept of danger) there were 3 girls in attendance too that would form part of her class, also a possibility of more as 5 other children are applying to their councils to attend and they are 6 yrs old! Perfect age group for Amira too! She would finally have a peer group that understand her and can play all be it along side with her! Do you remember when you were 5?? I do! The friends I had then I still am in touch with the majority of them through the wonders of Face Book and yes, they were the happiest times of my life! I only want the same for my child? Am I wrong for wanting that? The school have said that they would create a specialised program for Amira starting at home and building her into school on a 1:1 until they could "break" her into the routine! They have specialist in everyday behavioural, speech & language, educational psychologist etc and have been established for years!

I met all of the children and they were a delight, all polite and following their individual routines. I expressed concern as Amira would almost definitely not be that co operative and they assured me that the other children there had all been like Amira, if not worse, and with the proper environment and guidance Amira is more than capable of that too. The children had been there for a while and were laughing and playing but also doing great work in their very small classroom. There was no art work on wall that could distract them and they were sent on little missions to build confidence and social skills. I also loved the fact that I TRUST this school would do the right thing by my daughter and I cannot envisage 3 of their teachers lying on top of my 5 year old child to pin her down during an aggressive outburst! The only problem I face now is getting NC council to even consider this option for Amira as it is the most expensive option. The other school in the NC Council district I was told (by the school) was full. It is also situated on the opposite side of the city to where we live. Remember, I live right next to the border. The independent school I like is in the NT Council district yet only 5 mins from my door. Now, I am lead to believe that a child attending SNS is given a taxi & escort every day to and from school! That must cost a bit? They could save that if we went to the independent school as it is so close! I was advised to ring around other schools so I can build up a clear picture of what the others have to offer. So far I have been told they are full, not the correct placement for her, we will call you back and my favourite, someone will get back to you he is free when they get out of a meeting and discuss it with you! All however ending the conversation with of course you are welcome to come and have a look round anytime!

Hmmmmm! Think it may be time to start ringing Councillors & my MP again! Wrong to think you have to do that but I will do what I have to do! Wonder how much help I will get now (post election!!!). A few people have mentioned speaking to the press and shaming the council in question into doing something! I'm not sure to be honest. What do you all think???

I will say this, writing a blog has helped me! It is like a source of therapy and I like the fact that I have helped a few other people! I only hope I can help more! You will notice that I have not mentioned anyone's name, council or school directly as although I am not pointing the finger at any one specific I am well aware that some people will not like what I am writing, I am not here to cause offence to anyone, just to hopefully help others avoid my problems!


Went off on a tangent again didn't I! I do that quite a bit!!! In other words all I am saying is I am no further forward yet but I am still fighting! Not sure what step to take next? Press? MP? Councillors? Back to EWO? Pester the LEA? Help!!! Anyone else think this is a back to front way of getting your child the education she is entitled too?

Tomorrow will never come!

Wondering why I picked the title? This is for how many people this week have told me they would ring me back tomorrow! I'm still waiting! Good job I wasn't holding my breath!

I would love to try and help others that are struggling with the system too and hopefully stop them from having some of the same battles that we have! I have had a few emails from readers asking me how to work through the system, let's see if I can help! I have started a this post but will continue to add to it as I get more information etc...

Please add comments below if you have any info that can help others too.

Types of school 

• Mainstream School,
• ARC/ARP School (that means a specialist unit attached to a mainstream school), 
• Special Needs School (these can be council run or independent )

School Choices: you can choose any mainstream school for your child!

Mainstream School: Either you or the school can both apply for funding for 1:1 support directly to the local council. This is the council where you pay your council tax too, they are responsible for your child's funding, regardless if your school is in their borders or not! A panel will meet to decide how much (if any) your school will receive! This can be applied for anytime, even BEFORE your diagnosis or statement!

ARC/ARP School:  you seem to need to have a full statement for your child to enter this unit. YOU can request your child to be assessed and statemented from your council at any point. The school can also request a statement. Statement can take 6 months. Yes, 6months, apparently this is because they have to give all the departments dealing with your child time to collate all of the info! (wonder what happened to modern technology - haven't these people ever heard of e-mail!)

Special Needs School: this again needs a statement to gain entry. The statement is used to assess what school would be best for your child as different schools have different areas they focus on. This does not stop you from visiting schools in your area and making an informed decision and putting your recommendations forward. I will put a list of things to look for further down. If you do not agree with the council choice you can appeal! This however will delay the process.

Independent special needs schools: same as above and usually charity run. Your council must pay for your child to attend this school. Usually this is a more expensive option for the council. Very hard to get into. The council have to send paperwork to the school! Speak to the SEN (Special Educational Need) at your council. This school can perform their own assessment and will tell you honestly if your child would find their school accessible! Most are a week long however they can adapt and make an individual one for your child.

I personally believe in getting the choice right for your child, the first time. You know what is right, make you opinions heard! Remember that a school does not have to be in your district. If your councils special needs schools are full they will look at surrounding councils schools!

To get a Diagnosis you go to CAMHS (Child and Adult Mental Health Services). They will perform an ADOS (Autistic Diagnostic Observational Screening). Your GP can refer you for this. When you receive the diagnosis you can then apply for DLA(Disability Living Allowance) go to www.direct.gov.uk  it's the one for children you need! You will be told to paint the blackest picture of your child! I say yes that is true, however read the questions carefully and answer truthfully!

Do NOT believe that your child must be at school to get this or over a certain age!

Do NOT believe that Girls do not get autism or it is very rare! 1 in 100 children now have some form of autism, 1 in 74 are boys! Thats right the rest are GIRLS!

The Autistic Spectrum is huge, it covers everything from mild dyslexia and ADD to severe core autism! Your child may have any number of markers on it, this does not make them 'Autistic'!

The list of the departments that I posted last time all have to put their opinions to the board that make up the Statement!

If you do not get anywhere fast when ringing all the different people, do not be afraid to ring your local Councillors and local MP! I did and it is amazing how quickly people started to respond (especially pre-election)! Your local Parent Partnership will also help to guide you through the process and will attend any meetings with you.

Questions to ask yourself when looking at schools:

How many children like yours do you see?

Do you trust the school?

Social: Would you child have a peer group at this school? The council put a lot of thought into this. Independent schools do look at it, however, do not see it as the be all and end all! Remembering that a lot of of Autistic children play and work independently/side by side not with their peers!

Look at their curriculum if appropriate?

What therapies are available? Speech & Language/Occupational/Physical etc?

Environmental: what does it look & feel like? Remember it will look different from mainstream schools! It is very hard the first time. Realisation really does smack you in the face. The classes are of course smaller, children have varying disabilities. The walls are bare! This is for good reason! To much stimulation like mainstream make it very difficult for your child to focus on the job at hand!

Make a grid and when you go to visit the schools, score them! At the end you will see that one will tick the most boxes! Please remember you will never find a school that has everything you want, what you are looking for is the school with the best fit! Just like a jigsaw!!

Now for help no one thinks about!

Does your child have trouble getting hair cut/brushed?

Dentists?

Simply cutting toe nails & finger nails?

I was told about a group called Toby Henderson Trust. They will help you find the right hairdresser/dentist etc! This one is based in the North East however if anyone knows any others please add them on here.


This is just the start of this guide along the twisty path that is Special Education - I will continue to add to it as I get more information etc...

Please add comments below if you have any info that can help others too.

Where to start….…

In the words of Maria Von Trapp "let's start at the very beginning!"

I hope in me opening up to everyone that some other parents/guardians etc can learn something from my mistakes and maybe navigate the red tape more easily than I did! When I finally get Amira where she needs to be I am going to create a flow chart and step by step guide with useful contacts and structure of who to contact when!

So, my name is Bev and I have 2 children. Amira 5 (Moo, as nicknamed by my sister) and Tariq 3. I am a regular person, 33, work at a local supermarket chain organizing charity, fundraising and community events. I am a single mum but I am very lucky to have a supportive family. I am seriously in-debted to them as without them I would have gone round the twist years ago!

Please excuse spelling errors and punctuation! I usually write this in an emotional state. Either anger or on choked back tears!






Ok here goes…

Birth - 18 mths:

Amira was born "normal" weight, height and hit all milestones on time if not early! Walking at 9 months!!!! What a proud mummy! I had a future genius on my hands! Amira said her alphabet and numbers at 15 months.

The only problem I ever had was NO SLEEP! Of course we had the Health Visitors that made me feel like I was doing it all wrong! I had tried the control crying on so many occasions and it didn't just not work it went disastrously wrong! To the point Amira would tip her bed up, pull curtains down, smash entire contents of room, and vomit from crying so much. HV would just tell me to keep trying, I needed to be firmer!!!!

I felt like the worst mother in the world that I couldn't get my child to sleep! I ended up not going out to groups or with friend anymore as I was so tired, every day! By this time I had given birth to Tariq and the new HV would tell me Amira was obviously just jealous of a new child in the house as Amira stopped any eye contact and would appear deaf at times. She also stopped the talking and the cuddles. Temper and anger however took their place.
Terrible Twos starting early????

I asked the GP to check her over as my Grandmother was deaf and was concerned! Amira had some mild hearing loss and ended up getting grommets fitted to both ears when she was 18 months old.

Speech & Language Therapy followed through North Tyneside (NT) council as we lived in their district. As soon as we walked in there was a class room setting with lots of different stations set up to play! Amira went from table to table for the entire 1 hr and would not sit down for "snack time" the week they let her outside they couldn't get her back in for 45 mins! Amira had little or no social skills. I still cringe at some of the memories I have at Amira's behaviour and will never forget the looks from other parents!

Spoilt rotten, strong willed, independent, in need of a firm hand, brat. That is just some of the names used to discribe my child by other parents. Yes anyone out there that has done this! Oh and most of us have! Including me!!! We can hear you and trust me! We are doing everything we can! I assure you we do not want our kids to act like this!!

Anywhoo.… Amira completed the course and was discharged.


18mths-4yrs: The nursery years:

My nightmare truly begins. Amira was sent along with Tariq to a private nursery in Heaton. I like all mums returning to work worry and check every nursery in the area to find the right one! I selected a one with a homely feel and had ladies working there that were experienced and caring.

Both were eased gently into it and I stayed with them for days to help them settle in! I am a bit of a wrap them up in cotton wool sort of mammy! Drop a dummy I wouldn't just "suck it and stick it back in" as my sister would tell me " builds up their anti bodies!!" I would take it home to be sterilised or at least boiling water in a cup!

Both has separation anxiety but Tariq soon settled. Amira, everyday was different. Some she would run in others she would break her heart. Again my sister would tell me to leave her and walk away. Let the nursery ladies do their job. That is what they were trained to do and hanging around would make it harder for her.

Both kids were separated and Amira went upstairs and Tariq down. Every day I would dread arriving to be told another horror story about what Amira had done to other children.

Biting
Scratching
Destroying their art work
Not sharing
One day, I was told that Amira had tried to push another child (who she really liked) down the stairs as she was going home and Amira didn't want her too. Luckily, she didn't succeed.

I asked what they recommended and was told that if she bites I should "bite her back twice as hard!" I was disgusted at the idea of this however have heard it from various other sources too, usually older family members. I stewed on this info for a few days and eventually spoke to the manager of the nursery and she said the nursery did not support that method and she would speak to the person who told me this.

By now Amira had some repetitive behaviours, routines she would not move from! Driving to nursery a certain way, if you went a different route the tears, tantrums and violence would start immediately. Touching her hair was a definite no no! Amira has never had her hair brushed since she was 3! She gets it cut when she is asleep! Noises could send her on a major tantrum! Cupping hands over her ears and screaming until the noise was stopped or she was moved away! I always put that down to her grommets!

All this time that Amira was at nursery, everyday we would have some issues and you kind of build up a tolerance to it! Everyday wait until you drive round the corner and wipe the tears away!

I got to the point where I got concerned about the nursery, after all you hear stories in the papers all the time! These tears everyday and picking her up and carrying her in must be caused by something! I spoke to HV again as Amira still wasn't sleeping, only 2-4 hrs in a 24 hr period! I was knackered and I had another child and was working part time too! Nursery would allow her to nap for 1 hr at lunch time and tried vehemently to get them to stop this! She didn't have them at home! The HV told me to keep all the paperwork the nursery sent home. Never anything ever written down about the violence throughout the day to them or other children.

I would try to time it so I was the last to arrive with the kids every morning and the last or first to collect them as I couldn't bare bumping into other parents! The other children were worse as they would tell me "Amira bit/scratched/pushed me today!" *delete as appropriate!

Amira did not just restrict her violent outburst to nursery. I went to see my GP for an unrelated matter and had to strip off! Embarrassing enough, right? Wrong, after I re-dressed they questioned me how I had so many bruises, marks and bites all over my body. I had to admit it was my daughter and she was having trouble adjusting to nursery life.

As social & behavioural skills were not improving and sleep was becoming a distant memory to me! 2 hrs per night! The noise she made at night times would wake Tariq and he would then wake a few times through the night and be up at 6! Usually Amira would sleep when he was waking and I was at my wits ends! I would paint a face on everyday and smile and laugh and be crying on the inside! Facebook became a lifeline to me! I eventually rang my GP after a old school friend PM'd me that she thought I sounded depressed in recent status updates and asked if I needed any help! This was very sweet but how could I admit my failure as a mother! I had no control over my child. She was violent and hurt other children, the bully at nursery! She didn't speak very well. At this point words were very slow and extremely fragmented. she had little or no social skills and was extremely independent!

I knew I had to ask for help! I had already moved back home to my parents as I couldn't keep up! I found myself falling asleep in her bed whilst she played! I had baby gates on every door as I couldn't leave the two in the same room together as Amira would hurt her brother! Nursery had already called for Speech and Language therapy again this time we were Newcastle Council (NC) as we now lived in their district! They saw her and they discharged her again! Even after witnessing her aggressive behaviour they never referred her on to another department, they just forgot about her again! The ENT dept at the hospital had us back on numerous occasions though through my pestering the GP for check ups!

I went to the doctors in shame, Amira was 4 at this point but wouldn't be starting full time school until the following year due to the way her birthday fell. I pleaded with the Doctor to help me, sobbing that I couldn't get my child to sleep at night and I was looked at with disdain before the word sleep had even finished coming out of my mouth! I was told "that is a HV matter not a Dr matter. Go and speak to them". I tried to explain I had done everything they had asked but was told "I wasn't trying hard enough!" I had tried and was now positive it was me that was the problem!

Bad parenting, not firm enough?? I started to try different methods! I did the time out, the naughty step, the reward chart, removing a toy of hers! Each method I used for a few months at a time determined to find the right method! I read book after book! Baby Whisperer, Super Nanny, Nanny 911! I've read the lot! Nothing, not a thing, if anything it agrravated the situation to absolute boiling point and utter failure for me! I reached the bottom when I finally snapped when Amira attacked me and Tariq and left him with 4 bloody tracks down his face and me with a split lip, numerous bites scratches and bruises did I pull down her pants and smacked her hard on the bottom! She didn't react at all! I thought shock, but I was beside myself. I had smacked my child! I never would have believed I could have done it! It achieved nothing! I sat in a corner and cried! I never raised my hand to her again!

Amira would often come over to me, after she had hit or bit me and I flinched when she came too close as sometimes I never knew what to expect! Instead this time she said " You cry mammy, you cry!" Amira had picked up this phrase from God knows where but by God it cuts you to the core, when your child says it to you over and over again!

At this point Amira would become engrossed in TV programmes and would pick up words and phrases from there. I would take anything as a sign of normality! It was all said in an American accent! That wasn't strange though was it as all Disney is said in American accents!! Right???

As Amira was coming to full time school age I decided to speak directly to the school at the end of the main road from our home. Surrounding kids had gone to this school and I was informed it was very good. It was CofE school and was always lead to believe faith schools were some of the best!

Nursery welcomed the school for a visit and the teacher didn't seem to think there would be much of a problem! I on the other hand was knew she was wrong! Amira was four and a half, she still has dummies, she was still in nappies! I intensively focused on the toilet training for days and she was dry through the night eventually but it took months!

Dummies, Amira still has and I don't fight it now as it comforts her!

4-5yrs - School

In the June before she left the Nursery told me they thought Amira may be displaying "Red Markers!" I didn't have a clue what this ment and DR GOOGLE scared the bejesus out of me! I went back to HV and she didn't think that was right! So sent Amira back to get her ears checked again! Friends said it is the sleep deprevation! That is what causes the outbursts and slowed learning! I thought they had a point! I was tired and got ratty, same difference! We went down the route of ENT again and after a hospital  led sleep study they found that she had severe sleep apnoea and she needed her adenoids and tonsils removed as she snored like an old man and did wake herself up!

At this point Amira started school and by day 3 I was called into the to see the SENCO ( Special Education Needs teacher to you and me!) and they said there was definitely a problem! The wheels were finally put in motion for the help I had been asking for, however as they thought "it would be too much for Amira!" she would not stay full time yet, pick her up same time you pick Tariq up from nursery! 11:45!!!!!! As she was not 5 until Nov they could do that quite easily! There was 2 teachers in the class that job shared and 1 assistant! The "Mammy Mafia" was already well and truly established and if looks could kill I would have been buried in Australia by now! Everytime Amira had an incident with one of the other kids it got worse! I felt awful. The shame you feel is something I cannot explain. I would have felt more comfortable walking to the school butt naked and singing " she will be coming round the mountain!" I heard parents calling Amira a monster or evil! That she was naughty and warning their children to stay away from her! Amira became totally alienated and on occasion would be blamed for things she hadn't even done!

I knew parents were going into the school and complaining about her, yet not one of them came to me! What happened to their Christian values, their love, compassion and understanding?

I however sympathised with their situation too as I had gone through this all before during nursery! They forget I am a mother too! If someone was hurting my child I would not like it either! Every parent has the right to protect their child, but don't I too?? My child was carried into school every day and screamed as I was told to leave her there! She cried herself to sleep every night as she told me "me not like it!" "I frightened!" "nobody play with me!" and "I stay with you mammy!"

Weeks went by and I had a visit from the HV again and this time she saw me at rock bottom! Sending me back the GP and explaining the sleep issues again! The GP actually apologised and said that she never realised it was that bad! Amira was given Phenagen to attempt to help her sleep, and ref back to ENT! Medication kept Amira up for 3 days straight and she was hyperactive. Amira was now so tall she could turn light switches on, reach door locks and would go downstairs during the night when I would drop off! She was outside one morning at 3 am playing in the front garden! We now have several locks fitted! She has turned the gas on the oven! Turns taps on a regular basis! We have had many a bathroom incident! Locks are now removed from the bathroom as Amira loves nothing more than to make things!!! She has the best taste of course always using Dior, Gucci and Prada before she touches the shops own make!

I obviously stopped the meds and went back to GP! I pleaded for medication to help me stay awake if they couldn't give me anything else! She refused and said there was no such thing available on prescription! She contacted ENT to speed things up.

At school however things were getting worse and worse! A multi agency meeting was requested as Amira now has about 14 different depts dealing with her. This was in about the October.

GP
ENT
Pedeatrician
Health Visitor
School Nurse
Educational Phycologist
Speech & language Therapist
Behavioural therapist
Cahms
SENCO

To name just some of them and these were set up by the school. The meeting decided that Amira need 1-1 assistance at school and we would have to apply for funding from the council!

Wait for it….… Amira attended a school just up the street from us, not even 5 mins walk but it is in a different council district! Never knew at the time how much that bit of info would turn a hard process into a practically impossible one!

They did feel that Amira needed to be sorted out medically too! Ie ENT!

Different departments came in and observed her and some saw her extremes of behavior, some didn't! Amira is very unpredictable. Cahms witnessed Amira being excluded from things especially the nativity play. I however was getting more and more agitated at being ignored by various departments when ringing for help! NC council didn't seem to want to know! School were sending a request for funding and council were sending it back as it wasn't completed properly yet offering no assistance to how it should be completed! Amira ended up in an inter council battle! This went on and on!

On our first visit to the peadiatrician he told me he could instantly see there was something and prescribed melatonin to help Amira to sleep! I cried my eyes out as I finally thought here is someone who actually believes me! GP's, HV's, Speech & Langauge the lot, no-one ever seemed to believe what I said! I felt justified, and guilty! It's a strange situation! You feel awful for the years you have shouted and screamed at them to do as they are told! I had to go back and see him in a few months.

In the interim Amira had her adenoids and tonsils removed and more grommets added for good measure! No more snoring but no extra sleep! Damn damn and damn! I was devastated I had still pinned my hope that could of been the answer. I continue to have hope that maybe if we get 1-1 everything would be ok as aggression was slowing down at home or maybe I just learned how to handle the situation better???

We were now coming up to the Easter holidays (March) and we were still to have Amira's autistic assessment. Also we get to see the Pedeatrician again! This time he had a nursery nurse in the room with him and she engaged Amira in full 1-1 play! Directed by Amira! Not once asking her to do anything she didn't want to! This resulted in him ringing the school and insisting she just needed 1-1 there was nothing wrong with her! He then went off on a tangent and explained how our sister country the Netherlands don't start their children at school until they are 7! How that was meant to help other that a useful trivia fact I'm not quite sure!

Ps I know I forgot to mention the melatonin doesn't work either!!! It does for some children but not Amira! This all left me very positive! My daughter just needs extra help adjusting to school!

I hate getting the run around and ended up ringing every number from every department I had, someone had to listen or help or pass me on to the right person! Everyone promised to get back to me! Most didnt! Local Councillors were the next step! I sent passionate emails and made long phone calls! Eventually I emailed the local MP! Funny how when an MP assures you they look into it and they ring NC Council funding was given to Amira within the week! All 8 hours of it!

I was promised after the Easter holidays Amira would come back to full time after 2 weeks with her support in place! True to their word she did. For all of 1 week! I ask you to remember that during this entire time my daughter has never accessed any of the curriculum! Hates school with a passion now and still has un-predictable aggressive outbursts! The school nurse at one point had recommended as a reward scheme to give Amira glass pebbles or marbles and let her collect them in a jar, as she was currently being rewarded with Thomas the tank trains and was proving very successful! I tried, however, in a fit she threw it at a window and smashed it! The strength Amira has is incredible when she gets into a state!

After 1 week of full time Amira whilst using play dough cuts a child in class just under his eye with a knife she was using to cut play dough with! There was at the time 4 adults in the classroom, 1 being her 1-1! She had turned to put her coat on as this had happened! Understandably the child's parents were upset and another day I am kept behind school like a naughty schoolgirl being kept back to see the head! I hated every day going to collect Amira from school and taking her in! These were the moments I dreaded and I always waited for the day when a child gets a hurt that may not heal! Why was no one listening???

Next morning Amira was pinned to the floor by a teacher in an attempt to restrain her from hurting the teachers after I leave her at school! The insistence of removing her coat is a battle every morning and teachers all along have been unsure if it was best to follow the strict rules or adopt a go with the flow attitude with Amira! This morning was a bad one and I was at breaking point! I went into school and spoke to the head and SENCO and informed them Amira needs help, now and threatened to remove her from school!

I was advised that maybe this wouldn't be a bad idea as they couldn't cope with her anymore, even with the 1-1 and they were getting numerous complaints from parents! They then eventually contacted Educational Welfare. She came out to see me the next morning and after I told her all about the full situation she said she just wished someone had given me their number earlier! She agreed to remove Amira from mainstream education immediately and we went straight up to collect her.

Diagnosis:

I rang Cahms and begged for them to just tell me the results! They had promised they would be back in touch within 2 weeks, that turned into 8 weeks and a good deal of phone calls!

Well Amira was removed from school on the Wednesday afternoon, I finally got her diagnosis on the Friday! Core Autism with ADHD! Here I was worried that they were not going to give her a diagnosis cause on the day I thought she did really well! However, they are very good, they can spot things that we obviously are oblivious to or build up a tolerance to! My world seemed to have stopped that day! I have cried everyday since and cannot stop looking into her future and having all the pictures I had previously put there disappear! I have always had a flare for the dramatic but I always pictured her getting married, having kids, being successful in a career and ultimately being happy! I have failed her so far on the first venture of her life! School, I always thought this was meant to be the happiest time of her life and my child hated it! I feel like I missed all the warning signs, I smoked in the first 3 mths of pregnancy as I didn't know I was pregnant, I drank too and ate shellfish! Maybe cause I didn't breast feed! I don't know and nobody can answer the reason why my daughter got this. My God the guilt I feel is unbearable. The fear I have for the future is eating me up, what happens when I die who looks after her then?

May 2012 -Where do I stand now?

My Daughter is 5, out of school with nothing in place anytime soon, she has Autism and ADHD and we are waiting for a full statement to be completed that I have been told can take up to 6 mths! I rang around again today and am still battering may head against a brick wall. I now have one ally in NT Educational Welfare.

I am ready to fight for my daughters needs and education! I will not give up, I am exhausted and am still finding it hard for it all to sink in, but I will never stop until my daughter has her smile back!

I now have the battle of finding the right special needs school and trying to get her placed as soon as possible! I will keep you all posted and it looks like I will be back on the phone to MP'S soon !

An introduction...

This is my daughter.
Her name is Amira.
She is 5yrs old.
She is beautiful, she is funny, she is smart, she is loving, she is imaginative, she is independent ...oh, and did I mention she is also Autistic.

This is our story of the ongoing battle to get her the support and education she needs and deserves....