Tomorrow, March 18th, Joshua turns 7 years old. To be honest, this makes me a little sad. Birthdays are supposed to be happy, but birthdays with kids with special needs can be complicated. Last weekend we had a party for Joshua along with his two other brothers who have birthdays this month. He did not handle it well. He ended up getting very upset and throwing a fit because he was convinced he got a new blanket for his bed, something he wanted but we didn’t get for reasons I will get into later. He screamed for an hour and I could not convince him that he didn’t get a new blanket, but lots of other great things. It didn’t matter to him, he just wanted that one thing and was convinced he had gotten it and we were hiding it from him. He had gotten some new pajamas which turns out he thought was a blanket. I suspected that is what he was thinking and I tried to explain and show him they were pajamas but he was convinced I was lying to him. It was really frustrating. He had gotten lots of things he liked but he was too fixated on this one thing he didn’t get that nothing else mattered. (A life lesson we can all learn really.) It was at that point we decided that would be his only birthday celebration this year. Typically, the kids will have a party together and then on their actual birthday we will give them a present from us and have a family dinner. We will not do that for Joshua this year though because he doesn’t know his actual birthday is tomorrow and he just can’t handle the disruption and excitement of birthday right now. That makes me sad. Christmas was equally difficult. Kids with developmental challenges just struggle with change, so when you do something like a holiday that comes with change and over stimulation it just doesn’t go well sometimes, most of the time.
This birthday is hard for me. There is a grieving that comes with raising special kids. You daily are faced with the grief of what they might have been and what they actual are. I have said for me it is more difficult to deal with this grief than it is to deal with the loss of our son last year. That was extremely difficult but it is over now and we can deal with our feelings which will always be there, but we can move forward. With our two special kids we daily face the loss of skills and dreams and must grieve but not move forward. You are stuck in grief all the time. It’s like our loss of Andrew was a grief like Niagara Falls. Big rushing and all consuming, but it was an event. A one time thing. Now we are faced with dates and triggers that bring the grief and pain back to us and that is difficult, but it becomes easier with time, it never goes away but it does get easier. With Joshua and Kaki, its like a dripping faucet. Always there, always dripping. Difficult to deal with because you cannot move forward, you have to find a way to deal with daily life and continual grief. I know that sounds horrible, but I have found that acknowledging that is helpful for me to accept where we are and deal with that reality. But just like any loss, birthdays are hard. Birthdays are a time to celebrate all that the child has accomplished that year and be excited for all that will happen the coming year. For Joshua he has made small gains this year, he is talking better and can identify all his numbers and letters. However, the difficult part is he has also digressed in some areas like his destructive behavior that is just taking over our lives right now. Not a day goes by that he doesn’t destroy something and that is just heartbreaking and frustrating. And having a child a year younger than Josh it’s hard to see the things he should be doing but isn’t, like reading. Elijah read his first book yesterday, and that was wonderful, but it reminded me that Joshua is not even close to that and that is hard.
I don’t know what the next year will hold. We are hoping that we can get Josh into a self contained class for kids like him. I know it’s the best place for him but it’s hard to give up on him getting a regular education with regular kids, it’s another grieving and letting go. We are finding our new normal with him and that takes time. If you have a special kid with challenges you didn’t expect, I feel like it is so important to recognize the feelings of grief and loss you may not even know you are experiencing. Recognizing those feelings will help you better deal with them and be a better parent to your child.