On Thursday last week one of the mothers and I were waiting to pick the kids up, Kaleb was playing with some cars and put one in his mouth and the other mother said 'oh, no honey that's dirty.'. Now, if you know Kaleb you know how futile this is, everything goes in his mouth and there have been much worse things than a hot-wheel that he's been clinging to for the entire day. I smiled at the Mother and told her that I had given up on trying to get him to stop that habit, then we started talking about the difference in the kids. I told her how Kaleb was an 'everything in the mouth' kid and that Josh had never been interested in putting things in his mouth. She turned to me and said that her son never put anything in his mouth either and that her therapist told her that it wasn't normal, then she said 'that's why we are here right, at this school, they aren't normal'.
I laughed it off in the moment, but all the way home I kept thinking, 'Josh is normal lady, don't know what your problem is'. My shoulders hit an all time high in the tightness area, my neck became stiffer. I think this was about the time I identified problem number two, seeing all those kids who have very obvious disabilities, is to have the denial taken away from me about Josh's special needs. There are kids with all kinds of special needs, and most of them are much further along than Josh in the whole communication area. I see him fitting in so well there, I see all these kids who have special needs and I have to include Josh in the mix. I had thought I was over the denial part, I had thought I understood that he had these needs, and I had thought I was okay with that. The reality is altogether different though. I see him and I start to see where he is lacking, I start to see him as one of a whole, and no longer the only 'normal' child in the room.
Please note here... I am not trying to be politically incorrect, I do know that what I am saying sounds offensive to those of you who have kids with disabilities, it's not my intention to be anything more than honest about my struggles through this new transition. Facing Josh's communication issues have been in many ways harder than facing his heart issues. The heart issues we have numbers on, statistics, we know that a doctor is on top of it, that even though it is horrible and painful, that it is something that can be dealt with, and hopefully one day it won't rule his life the way it has been for the last 3.5 years. His speech problems though, that is something that is so vague, so unsure, so unknown. There is no doctor saying they know what is wrong and can fix it, there is no one to tell me what is wrong even. It's just there, an unknown. Was it because he was born early? Was it all the medications he received? Was it all the anesthetics? Was it the stroke? Is he just delayed because of all the months spent on his back in the hospital rather than developing like a normal child? We don't know. We are literally facing a wall of silence and sometimes I find myself banging my head against that wall.
Yes, things are improving, he is coming along very slowly, but there is no room anymore to doubt that there is a problem. All the people who kept saying 'once he starts talking he'll not stop, and it'll be in full sentences...' well, they were wrong and everyday I have to try to figure out what Josh is trying to say to me about the simplest things that most parents enjoy. What is he thinking? What did he do at school today? Who is his friend? What do you want to drink? What is your favorite colour? Food? Drink? Pair of socks... and I don't know when or if he will ever communicate with me, because no one knows the answer to that question.
There is no way to explain, to a person who is in the check out line asking Josh how old he is, that he can't answer them. No way to tell the kids in the park that he can't answer the question 'what's your name'?. No way to tell the waiter that he can't tell you what his brothers name is. Every time someone tries to talk to Josh I feel my defenses rise, waiting, always waiting for someone to judge. He has no visible disabilities, so they expect him to talk like every other 3.5 year old, when he doesn't you know they are wondering.
No, my child is not normal, he has serious health problems that have left him with serious speech delays. The past two weeks I have been forced to really see him that way, to really stop denying that it might just 'fix' itself. That is a hard hard thing to face when the one thing I want most in the world is to hear the thoughts of my first born.
I've been reading your blog for a few months now, since I saw on facebook a comment that a mutual friend had made on one of your posts. Today, I found that I can especially relate to this particular post. I have a daughter who is nearly three and, due to a traumatic experience at birth, has mild cerebral palsy which presents itself in her speech delays, perceptual issues and some gross motor challenges. I've always understood that she has delays and that she's a little different than other kids (physiotherapy, occupational therapy, and visits to every specialist under the sun make that painfully clear), but whenever everyone refers to her as 'disabled', it always sends a little jolt through me. To me, she's a little girl who has a few quirks and is by no means defined by said disability.
ReplyDeleteThis fall, I had to put my children into part time daycare when I returned to work and was shocked to be turned down by numerous providers who said that they weren't comfortable with her needs. I don't see her as that high needs or even much different from her peers, and wonder if I'm so far into denial that I'm missing something. As time goes by, however, and I start thinking about kindergarten next year the cold, hard reality is hitting me. What if she can't express her needs? What if something bad happens and she can't tell me? What if she can't relate to the other kids and they make fun of her? What if her behaviour escalates because she can't express herself using her words(which seems to be happening a bit already)? What if her brother (who is 18 months old) passes her developmentally and she becomes jealous or discouraged as a result? Since she is a child who is tall for her age, will others have unrealistic expectations for her and what will happen if she can't meet them?
Every day I stress over these things (and I understand your neck pain), and yet every day if I watch closely, she will amaze me with little things that she does. Whether it be responding to me with a 'miss you mommy' when I told her that I'd missed her when she was at daycare, or initiating an age-appropriate social reaction with a friend (including navigating her way up the stairs and back down without falling after being invited up to see her friend's room), I realize that I will always be worrying about the next thing and how she will fare, but that I need to have more faith in her and know that she'll be able to cope when she needs to.
Thank you for openly sharing your story and experiences in your blog. Prayers are with you and your family.
Thank you Sandra,
ReplyDeleteIt is so good to hear another mother express some of the same worries and concerns that I have. To hear the same questions being asked by someone else. Sometimes I really do think I am in denial but other times I think that as mothers we see more than the average person sees when they look at our child. We see the progression they have already made, we see the daily improvements and the new things that they can do, and so when someone says they aren't 'normal' or 'disabled' or mention that they have 'special needs', then you are right, it sends a jolt right through you because they don't know where that child has been, they don't know that (as an example) Josh had less than 10 words on March 22nd when he had his assessment at Bloorview, and that now he is almost totally a two word user. They don't know those things, just as they don't know how far your daughter has come, only you know that. Hang onto the faith you have in her and her abilities, and hang on to the improvements you see because they are HUGE! :)
Thank you so much for writing, for sharing this story with me and for being honest in the questions you ask. It's so good to know that I am not alone with those fears.
Laurie