This is part two of the story of my youngest son Jude and his problems. The first post, called My Son’s Journey Towards Movement chronicles his difficulties with learning to move and walk. It was posted over on Black Box Warnings.
So the next stage in the story sees Jude at almost 19months old. He is still not walking. He is cruising the furniture, enjoying movement a lot more, and even tolerating going in the swing for short bursts. He is, however, displaying problems with social skills and now has delays in his speech development and understanding of language. What does that all mean in real terms? He is 19 months old, does not walk, does not really crawl, has about 5 words that he will use consistently, doesn’t understand much of what I say to him, and cannot handle most social situations.
We have had a few unsettling incidents lately. I took him to our family doctor for his 18month check up. He gets freaked out by the doctor’s surgery, and he is terrified of strangers. He wouldn’t look at the doctor, gripped on to me and screamed when the doctor tried to examine him, and he basically shut down and wouldn’t interact at all. The doctor asked a lot of questions about his communication, social skills and movement issues. He brought up a check-list on his computer screen which was a ‘what to watch for when diagnosing autism’ type thing they must use there. He began checking boxes and making notes on it. He didn’t discuss it with me. As we are already in Occupational Therapy (OT) and dealing with all those issues he said he would not refer me on at this stage, as he would just be referring me to go and do what we are already doing, but that he wants to see us in another three months. This all left me thinking “what if my child has autism? what now?”.
I asked a few questions in a very supportive group of mum-friends that I have, and got some tips and helpful contacts which was useful. I googled like mad and read everything I could find. And you know what? It just didn’t sit with me. My child is very social. He seeks out interactions with people. He wants to play with you, not next to you. He is, however, terrified of a lot of things. The doctor didn’t really see him as he usually is because he was scared. Still, I don’t know much about these things. I only know what I see. I’m not a medical expert.
We had my nephew’s baptism on Sunday and I am his godmother (what an absolute honour, but I digress). As a godparent I needed to sit up front in the church and go out to the altar during the ceremony etc. This meant Jude couldn’t sit with me. My parents, who he sees once a week and knows really well, looked after him in the crying room. He completely freaked out. I mean absolutely lost the plot. He screamed a scream like he was dying. He was terrified. It was a strange place, there were lots of strange people, and he was separated from his mum. He just couldn’t cope. Later at the party afterwards he was just as bad, for all the same reasons. Well-meaning family members say things like “He is like that because you pick him up, just put him down and let him deal with it”, and so on. Leaving me feeling like my baby is broken and it’s all my fault for not being tough on him. My instinct tells me that he is not being manipulative or trying to get me to do things, he is terrified out of his wits and needs me. I react accordingly by holding him and reassuring him. Maybe that is wrong? And if he’s reacting like this more and more maybe he is on the autism spectrum?
I phoned his therapist. He thinks Jude has a lot of extreme fears and lots of anxiety about everything from movement to social situations, and that once we can get him past that, he will be fine. He is terrified of the doctor and the doctor’s office in general, causing him to shut down. Also there are a range of behaviors that can be displayed by children and it’s easy to just say ‘oh that’s a symptom of autism’, but actually you need to look at the individual child and see what is causing those behaviors in that child. With Jude it’s anxiety rather than autism. I felt so reassured after speaking with him about it I almost burst into tears right there and then.
We had Jude’s therapy session today. It was good. Great in fact. The speech therapist sat in and listened to him speak and said his communication is good, even though he doesn’t have a lot of words. She gave me some tips to help encourage him to associate words with objects more readily. We did some work on separation anxiety and Jude even left me and went into another room without me, of his own accord. I can tell you that in 19months that is one of the few times that has happened.
We are doing the brushing every 90 minutes of awake time again for a little while. We are just going to keep on plugging away. And for now that’s where it’s at. If there are any monumental updates then rest assured I will post, and post, and post!