When YOU notice your child is "different"

Last December we got our appointment with the speech therapist. Eileen had actually retired, or at least tried to, at one point but was back working at helping children to develop their language skills. Our initial assessment with Eileen had been in the previous March of 2016 where we had decided to work on some things from home and see how we felt at his next check up. Eileen worked from the HSE Primary Care Unit in town. She is good at what she does. She knows how to get down to a child's level and really interact with them. Assessments usually take place through observation and then interaction. Of the toys that had been placed around the room, Kal-el chose to play with the dollhouse. It had a door. Enough said.

After some questions and discussion with me she got down on the floor beside Kal-el and joined him playing with the house. Kal-el didn't say much. I hadn't expected him to. She gave Kal-el short instructions such as "put daddy doll on the bed". He did this, but then daddy doll fell off the bed. Well, this caused Kal-el to break into a hearty laugh. He then proceeded to put daddy doll back on the bed and let him fall off several more times, each time with a loud outburst of laughter. His laugh always makes me smile. It is so precious.

However, laughing became ALL that Kal-el wanted to do during the rest of the assessment. He did not want to interact any further with Eileen. He did not want to follow any other instructions. He simply wanted to make daddy doll fall off the bed so that he could laugh.

I agreed with Eileen when she discussed her conclusions with me. My son was indeed quite a bit behind where he should be in regards to his speech. She said that she would get in contact with Cora, an Occupational Therapist. I would just need to sign a few forms and fill in some details. Then Eileen said that was going to try to put Kal-el into one of the language groups. A lot of words came out of Eileen's mouth then...

Side note: Don't ever assume that someone that you are talking to has any idea what it is that you are talking about! What I mean by this is that sometimes in our own jobs/roles we are so familiar with what it is we do that we forget that there are people who do not use the same jargon that we do, or go to the same places that we do, or have the same knowledge about activities that we do.

I had to stop Eileen mid-sentence and ask what language group was and what would he do there. She explained that group would not only be about developing language skills but also about learning simple rules and following simple instructions. I immediately decided in my head that Kal-el would not be a good participant but, as with everything else that involved my son, if it would help him then we would certainly give it a try.

The first week of language group was for the parents only. On my way to the Primary Care centre I wondered what kind of room would be used for group and imagined a spacious colourful room with some tables and chairs for the children and some educational toys neatly placed on ikea style shelving units. I used to teach little children you see. Junior/Senior Infant age. I am very big on child friendly spaces when working with children. So I was somewhat disappointed to find out that language group took place in Eileen's office. When we entered, (all 4 of us), we were asked to take a seat and then Eileen explained what would happen for the next 5 weeks and what our roles would be at each session. Basically it was our job to keep our child seated on his mat and to keep him quiet so as not to distract the other children when it was their turn to do an activity. All I could think of was how I was going to have my work cut out. It wasn't that Kal-el was a naughty child who loved to disobey Mummy's instructions. It was more that I didn't know if he could follow anyone else's instructions. Still, I was interested in finding out how he would interact with the other children in the group who all happened to be boys his age. Roll on the next week!

When Tuesday came around again I talked with Kal-el that morning about going to see Eileen. He remembered instantly whom I was talking about. When Kal-el talked to me at this stage, he would just use one to five-word sentences. So when I told him where we were going to go that morning he replied with, "Go to Eileen's house. Go to carpark. Go in lift. Press the button. Number 4. Let's go see Eileen. Kal-el play dollhouse."

Uh-oh, there it was. "Kal-el play dollhouse". He had remembered his last visit and how he had laughed so much whilst playing with daddy doll in the dollhouse. I was hoping that he would forget about the dollhouse by the time we got there. Kal-el doesn't forget!

The door of the Primary Care unit is an automatic one. As we stayed in the waiting area just inside the entrance until group was called, Kal-el stood and watched the door open and close whilst he did a little hand-flapping and muscle tensing. Usual comments from people who witness this for the first time include; "Awh he's just so adorable watching the doors like that" and "Isn't it wonderful how something as simple as an automatic door can fascinate a child". However, when someone has witnessed Kal-el's "obsession" with doors several times, (like the other mums in this group would), the comments kinda change to; "Why does your son always watch the doors?" or "What does Kal-el find so fascinating about that door?".

I can't give an explanation other than he just has a thing about doors.

That's when you get the feeling people are beginning to think that your child is a little "odd" or "weird".

I guess the fact that none of the other children in language group were remotely interested in doors but would instead watch Kal-el as he got so excited about the door opening and closing, made me begin to see just how "different" he was.

It's an uncomfortable feeling. When you watch 3 year olds studying your son because they don't understand why he is so fixated, or why he is making that low humming sound with the high pitched shriek every now and then and he flaps his hands, you begin to visualise his future in the school yard and can't help but wonder what the children will think of him then, and even worse than that, what they might say to him.

During the entire first group session with Kal-el, he would not sit on his mat but only on my lap as I sat on the floor. He cried. He continually asked for the dollhouse. It didn't help that the office had not been cleared out and the toys had been all just piled up in one corner of the room. Knowing my son, I knew the fact that he could see it didn't help. I handled it as best I could and I think we did ok in that he didn't distract the others too much. He did not participate in the group at all that day.

But each week saw a slight improvement. He began to sit on his mat. He stopped asking for the dollhouse. He took part in some of the activities. But I found that he would not look at Eileen or her helper, but would look all around the room instead when either of them spoke to him. He seem constantly distracted, even at our last session. It was rather frustrating as his mum when he wouldn't participate fully. You see a lot of the questions he was being asked I knew that he could easily answer. A lot of the instructions that he was being given I knew that he could easily follow.

It's like having a child in the school play. They have been excited about it for weeks. They've come home from school almost every day telling you all about their role, their lines, what they need to wear. They've practiced in school and then practiced again with you at home and on the day of the play they are so happy that they could burst. They just can't wait for mummy and daddy to see them perform. You sit in the audience proud but nervous as the play begins. You know it's time for your child to enter onto the stage from all of the practices you've been a part of in your home. You sit up straight so that your child can see you there beaming with pride. Here she is. Out she steps. And then......she freezes. She won't move. She won't talk. And within moments the only thing that she will do is begin to cry. And there's nothing you can do about it.

The other children in language group spun the wheel....picked up the card....attempted to describe the picture....matched the image....added the extra word to the sentence....sat back down....

Kal-el didn't.

I wasn't until I attended an information session on Sensory Processing several weeks later that I realised why Kal-el wasn't a good participant in his language group. Sensory Processing is something I will share in another post. Unfortunately, it just reinforced what I had already thought.

My son was "different".