Blue Sky lives in Dublin and is a Mammy to three, including a girl with Cerebral Palsy and a nine-year old boy with Aspergers. She blogs about all sorts of random stuff including special needs, social issues, and life as a coffee junkie.
From Birth to Outreach
"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 though 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 consultant, 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 were 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 stressful events caused him to start behaving extremely badly in school and suspension was mentioned. He was given time out of the class to deal with his social and emotional issues, and put on the Rainbows Programme.
But his behaviour did not improve. 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 rc. 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, because otherwise his behaviour might have been caused by crap parenting skills.
Funny how I thought that naming “the problem” would also solve it. Of course it didn't. The school organised resource hours and a shared SNA, but there was little progress. Yet sometimes he would go for a while with no problems, just odd behaviours. So I did nothing, until a couple of friends from the world of special needs told me that I could be heading for big trouble. And I listened - it wasn’t like the sometimes annoying advice you get as a new Mum. It takes guts for another parent to tell you that your child might have special needs or need extra help. They had no idea how I would react and they were taking a big risk.
This time I did listen, but it wasn’t easy to hear.
Myself and CD went to look at some other schools, just in case. I brought him with me so that I could gauge his reaction to smaller classes and other children with Asperger’s. He was completely cool about the whole thing - not like his Mammy.
Then suddenly we had the offer of a place, for this September, in the Asperger Outreach Class that we both liked the best. And about a week to decide.
I thought of the warnings from other parents, how his behaviour could deteriorate further without intervention, and how that intervention really needed to take place before he became a teenager. And I acted on their advice.
He started in his new school in September. And yes there have been a few hiccups, but he is much happier and better behaved at home, and he skips out to the bus in the mornings. That says it all to me. It was a big decision to make, but I think I did the right thing for my son.
Read original post
Recommend
Comments (1)
Is the "Asperger Outreach Class" a program offered at the local public school, or is it offered through another institution?