He drops his head sad because yet another child walks away, laughing, to play with someone else who they can talk to. A teacher who says “He can just try it and see how it goes, then we will just have to figure something out from there.” Those are words and actions that I experienced recently with my son. Words said to me after I told them he couldn’t do it. Words and actions that still dig a hole in my heart and soul. But they’re just words right?! And they’re just kids too. But to a mom, words and actions such as these, by people who just don’t understand what it is like, really, really hurt.
You see, ‘trying’ for my son in this situation was memorization and repeating of words from a book. Repeating of words, most any words, is something that he cannot do, much less speaking normal everyday words. Trying to play with children whose speech is where he should be will not play because they can’t understand understand him. Words and sentences that most three year olds can rattle off on a daily basis is something that we are patiently waiting on. Not only waiting on, but also working on.
My son has a disability, actually two. However, if you look at him, you don’t ‘see’ a disability. This is because his disabilities cannot be seen. And if you were to hear him, one might think that he is just ‘slow’ or ‘behind’ compared to kids his age. Truth is, his disabilities are classified as ‘Hidden Disabilities.’ Hidden disabilities are ones that cannot be outwardly seen. Some examples of these disabilities are speech and language, vision, hearing, ADD/ADHD, food, etc. My son has the first set — speech and language.
Truth is, we’ve known he’s been behind in his speech. We have been working with the doctor and with the state for preliminary testing for over a year. I was being heard by the doctor on some level but I wasn’t being heard completely. Finally, after my son’s three year check-up, the doctor agreed to send us to an ENT to be checked for enlarged tonsils and adenoids. I had done my homework, found out our family histories, and knew that these two things could be part of his problem.
Upon seeing the ENT, surgery was recommended right away because my son’s tonsils were almost double the size they should be and since he was already going to be under, they were going to take his adenoids too. Fine with me because again, I knew the history of our families. Once he was out of surgery, we learned his adenoids were blocking about 75% of his nasal cavity. The doctor said it was no wonder he couldn’t talk well or even breathe well for that matter.
Go forward five months. Evaluation and testing began by the state on my son’s speech. While the surgery did help to a degree, he was behind in formation of letters and sounds among other things. However, the surgery didn’t help enough for the situation to correct itself. It was during these tests and evaluations that we learned how severe my son’s speech disability really was. The language aspect was foreign to me. Receiving this information, while I knew it was coming, was still really hard to digest, especially once I found out how bad it really was on the scales.
Speech and language disabilities fall together and fall separately. With speech disabilities it is more than he just can’t say a word; it’s that he can’t say or pronounce the letters or express them. And it isn’t just ‘big’ words he can’t say, it’s the little or easy ones like his name, his age, colors, numbers, please, thank you, bat, ball, etc. In addition to this, he also has a language disability. In the language disability, it’s a receptive language issue. With the language, it’s not understanding pronouns, following all commands, vocabulary, word form, etc.
So now, at the end of all these testing and surgery, we are in therapy twice a week within our county school, with a Licensed Speech Language Pathologist. We also work on his development at home. However, our struggles are not over. There are still many hurdles to overcome and much patience to be gathered and used. Our struggle as a family — with his disabilities — affect us daily. While we can understand more of his words and his wants, it’s still a struggle to understand all his wants, needs, and desires. But even in all this, he is smart, brilliant, intelligent, kind, and loving.
Parenting a child like this is HARD. And FRUSTRATING at times. Lots of times actually. And a lot of times I think I’ve failed with him, by him, as a mother. And I do lose my cool every now and then with him when I just don’t understand or when he can’t get us to understand and just starts yelling. Yes, those moments are especially hard, frustrating, and trying. But we’re trying. We’re learning.
Having an older sibling too who is ‘normal’ adds to this because each child has to be parented and dealt with two completely different ways. And yes, at times it doesn’t seem fair, but life never is and neither is being a parent. But he is learning too that he is ‘different’ and needs more but we’ve adapted and we are all learning. And trying. And teaching. And encouraging. But yet, in all this, IT. IS. HARD. And while we try to make his issues known to others who interact with him at his school and our church, there are times where people just don’t understand.
To most people, a disability is something that has to be seen, when in all actuality, there are A LOT that are unseen. And there are mom friends, whose children have a ‘hidden’ disability, that have been mom shamed just like I have been. But we stick together and try to make our voices heard, not just to be heard, but to be advocates for our children for people who do not understand. Especially to other moms who have a child like I do.