23 February 2013

early signs of autism

Salam Alaikum

Early signs of autism are quite difficult to spot. Some won't start showing signs until they reach 1 years old, some even older. The most common signs are speech and development delays. I won't go into full details of all the signs, as i think this website is really good MashaAllah I will however tell my story and bear in mind every case is different :)
During my son's first 3 years of life, I had my concerns that everything wasn't how it should be. Unlike my girls, when he was fed, he never fell asleep and he wouldn't sleep if I held him closely. I would either have to sit back and lay him across my legs or in his cot. I found this quite bizarre and brought it up with my health visitor. Her response was, "he's a boy, they're different from girls, besides every child has different likes and dislikes". I accepted her answer, although i did feel a bit uneasy, but who was i to challenge her? She's the one with the know how, right?
Another issue I had with him and wish also made me quite concerned was that by the age of 6 months, he couldn't turn from back to stomach! He didn't manage to do it until he was 7 months old. Again I approach the health visitor, who again brushed me off by saying "he's a boy, they tend to be lazy, don't worry he will catch up later on".. He didn't sit until he was about 10 months, hardly crawled, but walked by the age of 13 months..
He was a very quiet boy, he hardly cried. The first year of his life was so easy in that sense MashaAllah. He loved his cars and trains, actually anything with wheels on that he could spin. He would push his push-along-car on the side and just sit and spin the wheels. He would do line ups of cars, trains and bricks, usually he would climb up on the sofa and line them up on the radiator behind it (it was never switched on). When I tried to play with him and his trains, he would just give me his back and keep playing on his own.. Now I didn't see this as a sign of anything at the time. I just saw it as a boy thing and his personality.
He had delayed speech.. He didn't really say much, he never said mama or dada, like most babies do.. The first time he said any proper word, was when I dropped off my girls at nursery. We walked pass the trolley with lunch bags and he pointed and said "Mickey Mouse!" he was about 1 1/2 years then, if i remember correctly.. Then a few weeks later, whilst i was preparing lunch, he sat on the floor in the livingroom and counted from 1-10 and 10-1! I was absolutely amazed by this! Ran over to him and asked him several times  to do it a again, nope! I was totally ignored.. But Alhamdulillah shortly after he started talking like other toddlers do, but was a bit delayed. The health visitor assured me that this delay was due to him hearing 3 languages at home, Khair InshaAllah
Just before he was 2 years old, I gave birth to my youngest girl. When we came home from the hospital, he didn't show any interest in the baby at all! The girls were so excited and couldn't wait to sit with her in their lap. After they both had sat with her for a while, I put the baby down on a blanket on the floor. I told my son to come over and say hi.. He came over looked at her for a bit, then he grabbed her arm, she startled and cried and he slapped her on her chest! I was shocked and as a reaction i shouted "No!" at him and grabbed the baby to comfort her.. After that he couldn't stand the sight of her. I couldn't put her down on the floor at all and had to supervise him constantly, as he would hurt her otherwise. I used to have the baby in the car seat whenever i had to do chores or cook, so i could have her next to me at all times. That was quite hard at times to be honest.
It was also around this time when he started to have uncontrollable tantrums. He would scream for long periods at times and would lash out at anyone nearby, sometimes I had to put him in lock-down just to calm him down, it was horrible at times, it was as if he was out of his own body, you couldn't get contact with him at all SubhanAllah. A friend of mine, who was on a visit one day, when he had one of his uncontrollable tantrums, asked me if I had any thoughts of him having autism. I swear I got really offended! What I knew of autism at that time, was that they were mentally retarded, AstaghfirAllah. I told her exactly what the health visitor told me, that there was no concerns there at all.
Not long after that episode, we went to her house. She lives up on the Moors, so it's quite open and always a breeze.. That day when we left her house and got outside, he started screaming like mad! He put his hands over his ears and bounced around, I had never seen anything like it! I grabbed him and carried him to the car, got him to calm down and tried to ask what was the matter, but no response at all. My friend suggested that i took him to my GP and got him checked out, she then told me a story of her friend, who's daugther had reacted like that once and she had autism. I rolled my eyes and took off.. I took him to the GP the next day, but he found nothing wrong with his ears.  From this day, if it was windy or cold he would do the same! he wouldn't leave the house without a hat, regardless the temperature and when the winter arrived he used to lock his body and wouldn't even move. So I would have to carry him to and from the car, whenever we had to go somewhere.
When he started nursery, in April 2010, he had his elder sister with him (my second daughter was attending the nursery at that time). He did really well and thoroughly enjoyed it. But I think it was because he had been coming to that nursery since he was born and therefore knew all members of staff. Whenever he got upset, his sister would comfort him and the drama was soon over. But as we got closer to end of term, the head of the nursery, pulled me aside and we discussed some of the issues with him. She told me that he seemed too excited about the smallest things, at story telling he would him up and down and really get into the story. Aswell as he would remember the story almost word by word, just by hearing it once or twice and would interrupt the session. Lol this really made me laugh, because to me that just indicates he has great memory skills, although I know it must have been rather annoying for the teacher telling the story.. Also he had some issues with sharing toys and he would get completely thrown off, if he didn’t get to play with the trains every morning. It was as if he had created his own routine. He would get in to the nursery, straight to the trains, then when the door opened, he’d go outside to play, then back inside for a snack , play with the trains and outside again, until it was tidy up time and they finished off the day with a song and a story.. After telling me all this, she then went on and say she though he might be slightly autistic. Not that he was, but if he was, then it was a mild version of it. Again I got annoyed and offended and explained to her, just as I did to my friend , that there was nothing wrong. And we left it at that.
Just as we finished that school term, the kids’ father became very ill. He was in hospital for several weeks and there was a period of time, where the doctors gave him 50/50 chance of survival. This had a huge impact on the kids. I could not get myself to tell them the reality of the situation, they were told he was very ill, but would be back soon, InshaAllah. It was probably the most difficult time for all of us and it was then I noticed how my son would withdraw himself completely and he became very clingy aswell. He has always had difficulties in attaching himself to people and this got worse during this time. In the end I had to inform the nursery of what was going on, as he was becoming more and more frustrated at home. He would attack his sisters without reasons and it was a constant battle everytime he came home. The nursery were absolutely amazing! They offered me transport for the kids and offered them fulltime sessions, without extra costs. They even offered to take them out and babysit! They were such a great support for both me and my kids, that I’ll never be able to thank them enough! As the summer holiday approached, their father started to recover, Alhamdulillah and was finally discharged. I knew that this would be a long holiday and right I was. My son totally rejected his father, he refused to even be in the same room as him and it took us weeks for him to get used to seeing his dad in this fragile state.
In September 2010, my 2nd daugther joined her eldest sister in primary school, which meant he would be in nursery on his own. This was in particular hard for him to accept and he would absolutely kick off every morning, after Dina and Maria had been dropped off. And as we approached the nursery, he would refuse to get out of the car and sometimes he would try to hurt his baby sister aswell. But when we finally got out of the car he’d be fine. Then when I picked him up from nursery, he’d start all over again, screaming, throwing himself down on the road and God knows what! This would start as soon as we came out of the nursery until we came home. Then he would start attacking his baby sister and would do anything to make her upset. This in particular was very hard to deal with. She was defenceless and I would be locked into sitting with her in my lap constantly, so he wouldn’t touch her and this would carry on for at least an hour or so. Then it started all over again when we picked up the girls from school. He would attack them, but especially my 2nd daugther, who had just left nursery. It got to a point where I actually starting thinking there must be something wrong with him. I spoke to the head of the nursery again and she said they’d keep an eye out for the different aspects which would indicate there was something wrong and by them collecting information, they’d be able to refer us to the childrens mental health unit (who will be able to get the right people in and a diagnosis).
As time went by, he started to settle in a bit more, as he got used to his routine, but he’d still be lashing out after his baby sister whenever possible. During that academic year I spoke to the nursery several times and every time they would give me a different answer. He’d have autistic tendancies, then he’d be fine and then again autistic tendancies and this circle kept going until I actually asked them to help me to get hold of the people who deal with autism, so at least we’d get a professional in to look at him and get a diagnosis once and for all. All this run around made me more confused than anything, aswell as frustrated. They contacted camhs, who told them to send me on a parenting course! Ehm hello?? What was that all about?? The head of the nursery also got offended by their suggestion, as she knew there was absolutely NOTHING wrong with my parenting skills and she actually hung up on them lol! She then told me to go to my GP, who would be able to get a referral through for me. So I did, but the outcome was nothing like I had expected. I told him about all my worries and what the nursery had told me, in hope he’d say I wasn’t going insane and there was something! But nope, he turned around saying if my son was autistic, then all his kids were autistic! SubhanAllah what an unprofessional and arrogant statement to make. He then went on to say I had to contact my health visitor with my concerns as he’d only deal with 5 year + children with mental health issues.. I was NOT impressed! But I did contact my health visitor who gave me a similar answer as previously, “he’s a boy, he develops slower then girls” bla bla bla.. Then she wanted the nursery to write a report on his behaviour, so she could take that into consideration and take it from there. I honestly felt they were kicking me whilst I was down. Wouldn’t a good GP or health visitor take a mother seriously if she has concerns?? I went back to the nursery, feeling totally defeated and explained what had happen.. They then turned around and said “oh well we’ve tried, there might not be anything wrong afterall” and no paperwork would be done.. Talking about feeling let down, I was devastated..
But Alhamdulillah for my good friends both in real life and online. Without them, I doubt I would have been able to fight back at them. As one dear friend said to me “you won’t get anything done in this country unless you hassle the system, keep going and you’ll get results!” and so I did. I went back to the nursery and demanded that they’d do something to help me out, especially since he’d start in primary school after the summer holiday, which I was dreading as he doesn’t handle changes very well. And Lo and Behold! They FINALLY got the ball rolling! They sent a referral through to a speech and language therapist and the journey towards a diangosis started!
I will be making another post on the process of getting the diagnosis InshaAllah


Lena H. said...

May Allah grant you patience while handling this, I may not be a mother but i can understand what you are going through, my family went through very similar things with my younger brother, we didnt get a diagnosis until he was 10! (my father was also very ill and that deeply affected him) Autism comes in so many different cases but inshallah we will be to handle this. Stay strong, it seems like you are doing an amazing job at dealing with this.

Ukhtayya Deengers said...

aah this blog is so touching and awesome,may Allah give you ease.Allah gives his hardest test to his strongest soldiers.
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