My son had his doctor’s appointment last week with the psychiatrist. I didn’t go, doctors offices are still one part of agoraphobia that I can’t seem to shake.
When we had made an appointment with the doctor for him to be accessed for Aspergers, the doctor was doubtful and said she didn’t think he had it. I can understand that, he is a pretty quiet child that doesn’t talk much in social settings so I can see why it would be hard for her or for his teachers to notice it. Heck, while I always had a bit of suspicion about it, I was even doubtful because the symptoms were very subtle.
Instead I getting a check list and checking off what I think were his “symptoms”, I made a list of the traits he displays and gave examples. The doctor was appreciative of this and after reading that and asking him and my husband some questions, she had no doubt that he had Aspergers. She official diagnosed him so that he could get immediate help at school. Normally he would go for further testing, which he will eventually, but that could take up to a year for it to happen.
Even though I had known he had Aspergers for a few weeks now, and I originally was relieved at finally having a cause of all the issues he was having, the diagnosis hit me hard. In the back of my mind I had a little bit of denial, a little bit of hope that I was wrong.
I would see pictures of him as a little boy with a big smile on his face, so full of energy and happiness. So outgoing. He had a smile that would light up a room. It is so different from how he is now. A smile or a conversation is so rare. I feel like I have a totally different child. I went from being someone who he once enjoyed to what seems to be an annoyance that he has to deal with when he wants food.
I hate being so negative about this, but it hurts. It hurts me that he has struggled in the past and no one understood him when he said he just didn’t understand things or believed him when he said he really tried. It hurts me that he will continue to struggle. I know he isn’t broken, stupid, or wrong. He is just different and it is okay to be different. I know things will get better. I know he will start getting the help he needs, or at-least I hope he will.
I’m left feeling sad, worried, anxious, hopeless, frustrated, and lonely. I find it hard to get things done. I haven’t been consistent with my workouts or with housework. I’ve been keeping pretty quiet. I am taking the time to de-stress for both myself and my family.
Instead of making this all negative, I want to mention some of his recent accomplishments. I’ve been using some CBT steps with him to set goals. He went to a convenience store checkout alone while my husband was at a distance. This is a big step for him. He also went to Army Cadets 4 times and really enjoyed himself. He has yet to do a “parade night” where he has to march and wear a uniform (this is what he dreads) but we will find out next week how he does. Yesterday he ran 1km in just under 8 minutes. So proud! They may seem small, but for a boy who is afraid of people, keeps to himself and doesn’t venture out to far, this is huge.
For parents of kids on the spectrum, how did you handle the diagnosis? Did you have a hard time with it? Any tips for me for coping, for resources, or any positive stories on yourself or your children dealing with Aspergers? For parents or for aspies, what was the higher grades like in school? Another post full of questions 🙂 Thank you all for reading!