Since writing those letters to those two doctors I have felt better and think that I need to get it all out in the open, things that are still bothering me that have happened this past year. So far I've had a surprise apology and that has also made me feel better.
There's one thing left though that still bothers me that I feel like I need to get out. I was a member of a board online from the time I was pregnant with Joshua until December when I went to Joshua's physical therapy evaluation when I posted about it and didn't like the responses I got. I realize now I was never really a part of it and a lot of it is a popularity thing and I wasn't part of the popular group. I tried really hard to stay involved and I'm now wishing I had some of that time back to enjoy my time with Joshua as a baby more, it went by way too fast. I am glad I met some of the ladies on there that I am still in touch with and have been good friends to me. I am thinking now of ways I could have responded better to what was said but I don't think I could have back then, I think this past year and getting Joshua's diagnosis is what enables me to respond in a different way now.
Basically they didn't know what I was going through and had no way of knowing how it affected me. Part of what was said was based on the way the physical therapist treated and talked to me making me feel responsible for Joshua's delays. I know now that I was not responsible and feel worlds better about that. He has a condition he's had since conception, nothing we did caused or changed that. I am glad I didn't know ahead of time, I was able to enjoy my time with him in the beginning. Had we done prenatal testing who knows what our decision might have been. It will affect our decisions going forward and that's inevitable. I'm getting off topic here. Part of what was suggested was to suck it up and deal, cry about it and get over it. Having been through this past year I know that I would still be crying, it is not something you just get over. Other moms of special kids understand. That has been helpful to me, knowing other moms who have been in similar situations.
Also I have learned that I cannot do everything that his therapists recommend. There isn't enough time in the day and I have to find balance that works for me as this is our life and will be going forward for some time. Other moms of special kids would agree with me on this. I do know that I am doing the best I can, every day. The therapists don't always think about how what they say affects parents. I don't think they consider the time restraints or other therapies that he has and factor that in to our time. Of course I want what's best for him but that is for me to decide, not his therapists. They make recommendations but they don't know him like we do and no one knows whether it's the therapy or him making the improvements himself. Of course we will continue therapy with him but he has to have time to just play on his own without every second being therapy. Some therapy is play but some isn't and we can't expect him to work all the time.
Also something the neurologist said stuck with me, we can't change nature and while we don't know what the future does hold it's likely that he will get there at some point regardless. I also know my son better than anyone and if he isn't ready to learn something he just isn't going to do it. We have been trying to get him to walk for a long time and he's just not ready, period. When he wants to learn something he will pick it up right away. Just yesterday he learned to turn something on his pop up toy and it only took one time and he got it. However he does not want to stack blocks or pound pegs, period. His OT keeps working on those with him but he hates it. So basically I have some wisdom on this whole process now that I didn't have a year ago. I also know Joshua better and can predict his behavior better.
In less than 3 weeks Joshua will be 2 years old and I have no idea where this year went. We are so busy with therapies, preschool and appts. We did take two great vacations this year but somehow the year slipped by. I am trying harder to savor time before Joshua is another year older.