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!