Tuesday, March 2, 2010

How a perfect baby becomes an amazing boy with Aspergers

"He's perfect," said the consultant with relief as our baby son was born in 2001. This had been a 'high-risk' pregnancy, because my second child - Smiley - was born in 1996 at 26 weeks. But CDs birth had not been easy, and I didn't care about anything for a few days, with the result that he only got two names - his sisters got three each - and I just hope that didn't add to his problems! Very quickly though I fell in madly in love.

By the time of his christening, I looked like the cat who got the cream, according to his godfather. But even then, there were signs that he was not going to be an easy baby. He cried. A lot. And he wasn't great at eye contact. At 6 weeks he fell very ill with a roastingly high temperature, that no amount of Calpol and wet sponging would bring down. Finally, I dashed into the
Children's Hospital with him, and he was diagnosed with severe tonsillitis. This was a pattern that was to be repeated over and over again, during the next couple of years. I also noticed that he didn't point, and that he seemed to have no sense of balance. As soon as he started to toddle, he started to fall. And he had no idea of how to save himself. I called it tree falling. If you have ever seen a tree being cut down, you will know what I mean.

He just went straight down without putting his hands out, and even thou
gh I literally ran around after him, I couldn't always save him - I was terrified of head injuries and brain damage and spent long hours waiting for X-rays at local hospitals. He wasn't talking either. I started to worry after his first birthday, even though everyone said, "Oh he'll talk when he's ready," I just knew that something wasn't right, and began the long round of consultations. His paediatrician suggested that CD might have hearing issues, so I was sent to the local audiology clinic. There he was identified with speech and understanding delay. I remember this whirring noise in my head - the La La La thing, I'm not hearing this, I do not have two children with developmental delay, it is NOT POSSIBLE! But anyway I went home and worked hard to bring on his speech, and went back to work part-time. He started in a creche and that went fine. The staff said he was intelligent and friendly, but perhaps a little volatile.

Meanwhile the tonsillitis was becoming a real worry. At about 18 months he was referred to an ENT consul
tant, who took one look at his tonsils and put him on the urgent list for surgery. They were removed in 2003, and I was made up when almost immediately he gave me a big smile, opened his mouth and said "Mammy?", and once he started to talk there was no stopping him! Sadly, two weeks later I got one of the frights of my life when I heard a disturbance in his room at about midnight, and ran in to find him covered in blood - he'd had a bleed, one of possible complications of a tonsillectomy. I bundled him into the car and drove at what felt like 90 miles an hour to the hospital and literally ran in scattering people in my wake, all wild eyed and drenched in blood with this white-faced toddler in my arms. But after a couple of days, we came home and all seemed to be well once more.

There were other strange things happening though: I tried to start him at the local GAA club with his friends, but he hated it, and said he didn't like football. I enrolled him in swimming lessons as the rest of the family are very strong swimmers, but he just messed around and can still only swim a little and I didn't manage to teach him to ride his bike until he was seven!


Conversations with him w
ere and are very one-sided, he talks and you listen. He was difficult about everything unless it was something that he wanted to do, but again I was told by friends and family - with the best of intentions - that he was "just being a boy". Punishments such as the naughty step made no difference, the only thing that helped was giving him an exact schedule with times and dates as to what was going to happen. I also used a timer to let him know how long he had before the next activity was due to start. When other kids wound him up he would overreact, completely lose control and get quite violent, so some children were banned from playing with him, which really broke my heart. He got fussy about his clothes: all labels had to be cut out and only certain fabrics passed the 'comfort' test.

He started school in September 2005 and all seemed to be going fabulously at first! He loved his teacher and found the school work easy.
But in the meantime my marriage was falling apart, and it was beginning to have a really bad effect on the children. Following one event, CD started to behave extremely badly in school and suspension was mentioned. Angel also could not cope. It was time to act. On August 27th 2006, I moved out of the family home with the kids. Of course this was very traumatic, and we all thought that this was why CD continued to act up at school. He was given time out of the class to deal with his social and emotional issues, and put on the Rainbows Programme.

Still his behaviour did not improve in school. He would not follow instructions, hated handwriting, constantly messed, could be violent towards the other children when he got angry, and was not afraid of anyone, including the Principal. I was called in over and over again, even while I was desperately trying to hang onto my job. I started to google his behaviour and post on the rollercoaster parenting site. Initially, I thought it was ADHD. Then early in 2009, on yet another visit to the school, his class teacher said she thought he fitted a diagnosis of Aspergers syndrome, and that the school wanted to get the NEPS psychologist to review him. This happened in May and I had a firm diagnosis by July. I was actually more upset before the diagnosis, because I didn't know how I would cope - in the end it came almost as a relief, cos otherwise his behaviour might have been caused by crap parenting skills.

Now some supports have been put in place (no thanks to the Health Service tho'!) and, since Christmas, his behaviour at home and school has become more acceptable. I still find him very difficult to manage in all sorts of ways, but I now have the space to look back and see how far he has come. CD is funny, charming, affectionate and clever, and now I have an explanation for the things he says and does that are strange and sometimes scary. He was a perfect baby. He is now an amazing boy who has his own special take on the world: he has Aspergers.


24 comments:

  1. This brings back so many memories.
    We were also told our son would talk when he was ready....and that he was a typical boy.
    He talked at almost 2 and a half. Only learnt to ride a bike last year (when he was 15!), school was a constant struggle. Sadly we didn't get a diagnosis until he was 13....if only we'd had one sooner and got help.
    Best of luck to you.

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  2. We had the 'helpful' comments with talking too, they didn't help at all! My fella is a good bit younger than CD so I haven't experienced all you have, yet. It is a relief to have a diagnosis, that much I know. Then we have direction on how to best help our children:) Jen.

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  3. What a journey you're on...sounds to me like he's got the support of a great mum. Well done.

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  4. I cannot believe what you had to go through to get where you are. How awful, all those health problems too.
    My nephew (7) has aspergers, most of the time he is fine with us but he has had a lot of problems in school.
    A really interesting post thank you. x

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  5. Oh my, Blue Sky. What an incredible journey you're on. Lots of bumps, big scares and happy moments on the way.

    So glad you got that diagnosis for your fab CD. At least things make a little more sense now..for all of you. And you've got some company here, as you continue your journey ;-)

    Lovely post Blue Sky.

    xx Jazzy

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  6. I hate to mimic what the others have written, but this is QUITE a journey you're on! I can't imagine how difficult this must be for all of you! It really sounds like you're doing all the right things, though, and I really applaud your tenacity! Hang in there!!

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  7. Life has certainly thrown you some curve balls since those early carefree days back in the Joker, but you continue to deal with them with such grace. You're one inspiring lady and I'm glad to know you. A great post and I'm sure one that will help others in your position. xx

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  8. I didn't want this post to end blue sky! What struck me most was the length of time it took to reach a diagnosis...it makes running a marathon look like a doddle. Your kids sound fab (and so do you) XXX

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  9. Fantastic post Candi and it's amazing how great you managed to cope with so little support.CD is a very liucky boy!

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  10. Sorry about typo above clingy baby with teething issues in my arms :-)

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  11. What a lucky boy to have such a strong and resourceful mommy :) From the sound of it, you're doing an amazing job.

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  12. So many comments I don't know where to start..

    Magnum lady and Jen, glad it resonates.

    Helen, we go back a few years alright and I'm just so glad that we're still friends.

    And thank you so much to everyone else for all the lovely comments xx

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  13. Wow he certainly has come along way. Really pleased to hear he finaly has some support in place.

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  14. Thanks Casdok for your interest, and so pleased to hear your wonderful news during the week :)

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  15. oh blue sky, so much sounds like kyra in so many ways. Oh and as for the diagnosis, it hits you like a brick but fits and explains everything, at least it did for me. you have gone through so much and i am in awe of how you manage it all, your one amazing woman and i admire you so much for how you cope xxxx

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  16. Thanks coolkid - maybe we can get the two of them together one day - CD really wants to meet some other kids with aspergers

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  17. I really enjoyed reading this again Blue Sky. You and your gorgeous, smart CD have indeed come a long way:-)

    xx Jazzy

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  18. Hi, I recognise a lot in what you say and the sense of relief when you get the diagnosis. I also felt a sense of protection for me and my family because we were constantly questioned. Great to hear that things have improved for him.

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  19. Great post and one I can totally identify with, our diagnosis for madam came at the age of nine and I am racked with guilt that I didn't pick up on it sooner but I knew no better, I really did think I was just dealing with a strong willed child so it came as a huge relief when we had a name for it. Hope things become calmer as time goes on for you xx

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  20. @Jazzy - thanks so much for re-reading xx

    @aspie in the family - thanks for stopping by and commenting and I'm glad that it resonated.

    @Andra - I knew almost nothing about asperger's before it came to my door and it is hard to distinguish from other behaviours, so never ever feel bad about not getting a diagnosis earlier. You're a fab Mum doing amazing work with your kids xx

    Happy Mother's Day

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  21. Really enjoyed your post, probably because I have a similar story. My lad with aspergers was 11 when diagnosed but he had a pretty similar start to your boy ad because I had a younger boy with autism I kept thinking this can't be true I'm imagining it, but he is now thirteen and he has grown into his dx as the older he gets the more apparent it is but not necessarily all bad, I enjoy his quirkiness, and the best support a kid with aspergers needs is acceptance isn't it? Great post x

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  22. Just found out my little guy (5 and 1/2) has Aspergers. I was told that if it wasnt for his dyspraxya it his Aspergers may not have been picked up. He was and is such a placid child. I never had to put up a stair gate as once I said no to something he always followed the rules. He is very loving and always gives hugs. He's also very aware of feelings, he actually is a bit over-sensitive himself and is very aware of hurting other peoples feelings and gets very upset if he has done something wrong or has hurt anyone. When he was four years old he bumped into a little boy in his class and the boy fell and scratched his knee, my little guy tried to scrap his own leg off the ground to make the other little boy feel better! The only thing I worry about is that he will be taken advantage of as he is so trusting and soft. He does not know when someone is only joking and takes everything litterally. The Psychologist told me that he was a teachers dream as he follows every rule and is very intellegent and reading since he was three!

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    Replies
    1. Your son sounds really lovely :) And I know what you mean about the literal stuff, but if he is like my son he will learn that some of the things that people say cannot be taken literally :) Thank you for your comments x

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