When you have a child who is developmentally delayed, some people will give you the “I’m sorry” look out of sympathy, while others blow it off like it’s no big deal. Of course we all know that children grow and develop at their own pace, but for you and your child, it is hard and it hurts.
My son is 8 year’s old and has some pretty significant developmental delays (according to evaluation reports and scores) and even though I know these tests don’t truly reflect his strengths and his abilities, it still makes my heart ache.
Sure, I will smile and put on a brave face for my son and stay strong for him. I will listen to the recommendations from specialists and make my check lists for all of the therapeutic interventions and doctors appointments he will need. I will keep more than one calendar (I have 3) to keep track of these appointments and carry on. I will do all of this because my son needs these things, and this is how it has to be for now. I will hide how I am feeling deep down inside and continue to dance.
The truth though is that I am hurting. For a long time I used to think this was all temporary and that my son would “catch up” to his peers and be a “typical” child. Today, I see a much different picture. I have come to realize the struggles he has are more than likely going to stick around for the rest of his life. That doesn’t mean he will not make progress, because he IS making so much progress! It just means that he will more than likely need help along the way. Of course this is not the end of the world and the most terrible thing, but it is not an easy thing either.
When I speak with other parents with similar circumstances, there is another side of this that many of us have in common and it’s called ANXIETY. It is there and we need to talk about it more instead of shrugging it off saying “I’m fine”.
For me, I am usually lingering anywhere between feeling like “I’ve got this” or about to go completely bat shit crazy! Sure, I have my good days. Really good days. Then there are also bad days. I am talking about the kind of days when leaving the house feels so overwhelming, it begins to bring on anxiety. Maybe it’s the lack of sleep, or the 3rd cup of coffee. Maybe it’s just the thought of driving 40 min each way to therapies and having to sit there for 2 hours. Maybe it’s because it feels so isolating sometimes that it is almost unbearable. Maybe it’s admitting that these feelings are real.
I can’t tell you how many times I have cancelled plans because I am so anxious whenever I leave my son. There are maybe 3 people I trust to leave alone with him and one of them is my husband. I’m not even sure what exactly I am worried about. It’s just this constant state of worry. I know my son like the back of my hand. I know each sound he makes and what they mean, I know his body language and how to read it, I can tell immediately if something is wrong with him, I can understand him when no one else can. We have our own language and it is a beautiful thing, but being the only person who truly understands my son can be hard on me. There comes a lot of pressure with that, and when I have to leave the house and leave him, that pressure surfaces and a million “what if’s” engulf my mind. I know for some people this sounds crazy, and I have been told countless times that I need to stop feeling this way and that everything will be “alright”. I wish it were that simple.
When I share these feelings with other SN parents, they get it and this is why we need to talk about it more. Why I need to talk about it more. Not everyone will understand it and I don’t expect them to. This is my journey and the season I am in. I can’t change it and the more I fight it or try to go against it, the more difficult it becomes.
All I can do is continue to press on. Rejoice in the good days and just allow the bad days to happen. Admit that I fall apart pretty often, and that it’s ok to do so. It doesn’t make me weak or “crazy”. It makes me human.
For anyone else reading this, who feels the same way, you are human too and it is OK.