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!

it must be so hard. all the best with it and i hope you can find the answers you need and good health care professionals who are willing to investigate properly.
Thank you so much!
I hate words like “delayed” developmentally as if you had a bus to catch and were delayed. Jude is Jude his development is unique as everyone’s is, and in his own good time he will develop the skills he needs to navigate his world. He is a bright little boy who feels anxious about a world he can’t predict, soon he will work out how it all fits together and then watch out!
Yeah I hate it too, mainly because it makes me freak out when I hear it. But that’s what the doctor says, and that’s what they write in his files. Language can be so powerful.
What a touching story. A blessing and a challenge all in one small package. Jude, you’ve got a buddy in this Texan. I’m on your side, and I will be rooting for you everyday, Young Mate!
Thank you! He is gathering quite a nifty support team!
I think you’re doing a great job with the little fella. A child needs someone to be their champion. Stay your course.
Thanks. It’s hard sometimes because I’m a mum not a doctor but I think I get a feeling when something ‘fits’ or not.
Ugh – why do people that are not ‘specialists’ nor necessarily have a child with slightly different behaviors INSIST on telling a parent things like “let him cry it out” – abject terror requires action. That type of crying you’re describing seems to be much different than typical separation anxiety.
My son has his own quirks and his doc told me to get rid of all the books of things like “what to expect the first year” or looking up milestones etc b/c he was not going to have a typical baby/toddlerhood…and it made me feel so much better when I stopped following all that stuff and just dealt with things as they come.
You’re a terrific mum – go with your gut.
Yes throwing out the books is a great idea! Mostly I’m fine with it, it just seems to hit me every time we go for a check up and he gets ‘delayed’ stamped all over his paperwork.
It’s interesting/apropos that you mention the paperwork – I’m doing a guest post on Black Box Warnings tomorrow that relates to that “it hits me when it’s on paper” issue.
I can’t wait to read it
Steph, you are an amazing mom and are doing a fabulous job with Jude. Don’t let the words of those who don’t know your child make you feel inept or that this is your fault. Keep on keeping on and when you need some motivation or to vent you know how to hit me up.
Stay strong for Jude! You’re doing great!
Thanks, I appreciate your support
You will always have it.
Three things:
1) Trust your instincts!
2) Looking forward to reading about the “monumental updates” soon!
3) HUGS!
I hope there’s monumental updates soon too! And thanks
I think there’s a lot to say for Mothers intuition. I’m no doctor, but I know my children. When my boy fell off a seesaw, I knew he’d hurt himself badly, but the doctor who examined him told me with absolute certainty that there was no fracture. She was wrong. Against her professional advice, I took him for an X-ray, which revealed the fracture. The doctor was very surprised and acknowledged that there’s definitely something to ‘mothers intuition’. My point is, you are a mother (a great mother) and you know your children. Believe in that and yourself. No-one knows your child better than you do.
You know I really believe you are right. Thank you.
You’re an amazing person, Steph.
Hang in there.
Thank you!