A Mother's Love Can Be Blind

I guess for most diagnosis of disability the first indicator that something may not be quite right is developmental delay in the first few years of a child’s life. This was true for Kal-el. At first he was meeting all of his early milestones - his eyes followed objects around, he smiled at me, he babbled, he grasped objects with ease. He was a little late with sitting up unaided but was able to sit alone by 9 or 10 months. In fact, he was an incredible climber and balancer! He would climb from the floor onto our couch and then from our couch onto the window ledge above it. He could sit and balance on that ledge for hours if he wanted to. Often he would turn and just look out of the window watching everything that was happening outside, from the birds flying overhead to the grass below blowing in the wind. I’m sure it must have been a sad sight from the outside with the poor little boy looking longingly at the world going by but the truth was he was quite content and happy especially as he licked the windows “clean”.

It was not long after he began to sit up by himself that he began doing what we referred to as “The Jig”. Kal-el would sit not quite on his bottom but more on his tailbone, leaning back slightly so that he was just balancing. He would lift both of his legs off the floor and stretch them out in front of him tensing the muscles so that the legs were straight and often with toes pointed. He would then wave his arms about but in what seemed like a controlled motion, but a meaningless motion nonetheless. He would make a kind of “humming” sound but more like a long drawn out hum with the odd high pitched noise in between. During this “jig” he would look down to the ground intently usually with his head looking slightly to the left. He would wave his hands and legs about, sometimes clapping his feet together just as easily and as well as he could clap his hands. He would press some of his fingers together in quick motions and quickly move his hand against his ear once or twice flicking it gently. It often appeared to us as if he had a particular “routine” that he added to over time.

This happened almost daily. Kal-el could be distracted momentarily from this “jig” but very often would just return to the “routine” as soon as he could. At first we marvelled at it. My mother would always comment on it wondering what was going on in his little mind during all of this and hoping that one day he would be able to tell us. Over time though we did become somewhat concerned. My countless Google searches returned unsatisfactory results. The closest I could find was “hand-flapping” which was always associated with autism. This didn’t quite fit though. I just put it down to a quirk! (Kal-el still does “the jig” at age 3 ½ by the way and will possibly do it all of his lifetime! That’d be some sight on the dancefloor at the disco eh?).

As far as milestones go though, I guess I started to become concerned when Kal-el made no effort to pull himself to standing until he was 18 months, and walking came another 6 months after that. Even though I was elated that he was finally walking, I had to take into consideration the fact that he wasn’t talking. It was another 6 months before that began.

Thankfully, the public health service in Ireland carry out several developmental checks on children at varying times in the first few years usually at birth, 3 months, 6 months, 9-12 months, 1 year, 2 years and 3 years. At Kal-el’s 2 year developmental check there were concerns that he had just begun to walk and also that he hadn’t yet begun talking. An appointment was made with a speech therapist and after an initial assessment it was decided to do some work with him at home and then re-assess at his next check-up. (My daughter was a few months old when all of this was happening with the therapists and due to lack of sleep and general living of life in a foggy daze - the details surrounding these appointments is quite hazy. (For example, people kept asking if I had missed my appointment with Sarah “Somebody” earlier that year. I have absolutely no recollection of this Sarah person or what the appointment was for! But it became obvious that yes, I had indeed missed my appointment!!!).

This is Kal-el walking for the first time a month before he turned 2.

Even though the health professionals seemed somewhat concerned at Kal-el’s development, I wasn’t. I just believed that he was getting there at his own pace. There were, however, other indicators that perhaps things weren’t going as well as I had hoped. I guess we first noticed something else was a little odd when Kal-el got very upset at night when my hubby would read him a bedtime story. Night time reading had been something I had encouraged from the beginning. Derek worked hard all day, so spending that time one-on-one with Kal-el was important. But somewhere between 9 months and 18 months, Kal-el would just start to shout when Derek would begin to read. So bedtime stories stopped. All stories stopped. Kal-el would react negatively whenever either of us would begin to read aloud.

Singing also stopped. Any kind. By anyone. As did nursery rhymes. And telephone calls.

Kal-el began to hate being taken into a supermarket and would cover his ears when we would go into a store. He would more than cover them. He would press his hands as hard as he could against them. I discovered it was because he anticipated an announcement being made over the public address system. When this did happen he would cry.

He would also cover his ears whenever we went into a new place or into a place where he was unsure of what would happen. Even family members homes that he was familiar with.

And then began the obsession with DOORS! All kinds of doors. Interior doors. Automatic doors. Doors on dollhouses. Didn’t matter, if it was a door then he was interested in it. He would watch doors open and close all day if he could. It’s was like a compulsion. He couldn’t help it.

I guess when it’s all written down like that it just screams out that something is wrong! The thing was that I had had a little experience with children on the Autism Spectrum. Three children to be exact. Two through my job as a teacher and one through the privilege of being his Aunt. These three all had very similar characteristics; meltdowns, frustration, violent attacks on furniture and equipment, violent attacks on people, inability to communicate effectively. Kal-el never displayed any of these characteristics. He was the most gentle soul. Affectionate. Caring. Quiet. Submissive. Placid. I got eye-contact all of the time. He responded to his name. Yes, I recognised a few “sensory processing disorder” traits, but nothing like I had experienced with these other children at different times.

By the time the 3 year developmental check came around, (and he was actually 3 years and 4 months for it), I was confident that Kal-el’s speech had improved so much in that past year that the nurse would give me the thumbs up and we would be on our merry way. She didn’t. She expressed concern regarding his speech and asked if she could refer him to a therapist. He was about 12 to 18 months behind his average peers. I agreed because as far as I was concerned it couldn’t hurt and any extra help he received would only be a benefit to him. She also asked if she could refer him to the Early Intervention Services who would assess him and decide if he qualified to be taken onto their team. I didn’t really see the point, but again I didn’t think it would do any harm. The more help he received to get his language skills on par with his peers the better! So I gave the go ahead for it all. Anything to help my little boy communicate better.

(Let me point out that there were plenty of amazing things that Kal-el was on track with, and in my opinion even surpassed his peers on. I’ll save them for another post though. For now I just want to highlight the “red flags”.)

All we could do was wait for the appointments to come in.

I was pretty confident there wasn’t enough “wrong” to concern anyone.

But this was indeed a mother’s love blinding me to what were obvious red flags to other people. As much as I wanted, hoped and prayed that my sweet little superhero would simply catch up with his development, other people, professionals in their fields, could see that he needed extra help. It wouldn’t be long before we would begin our first speech therapy group sessions and I will talk in depth about that in my next post. Here I just want to show that although we as Supermoms and Superdads want to be able to do everything that is needed for our precious little angels, there are times when we will need to let others into our little circle so that those same little angels can truly flourish in life.

That is not an easy thing to do.

But if you ever need to, don’t worry, you WILL be able to!

P.S. "Happy Saint Patrick's Day!"