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 !