For a while know, I would say about 2 years, I have been asking for help getting on the waiting list to see a Psychologist at the Children's hospital. He sees a social worker, a nurse practitioner, and an advocate but I have not been able to get him on the list to see an actual Psychologist. I kept getting told "I looked into it and it's a very long waiting list." Yeah no shit it's a long waiting list, but did you put him on it like I asked? No? Well, screw you very much!
About three months ago I took it upon myself to figure out what I needed to do to get further testing done for my son. I talked to his pediatrician and asked if I would need a referral, which they gladly wrote for me, then I called down to Children's and asked what I needed to do to get him tested further than just "he has ADHD."
They put me on the waiting list, which I expected to be extremely long, but two months later I had an appointment on the books. Yeah the appointment wasn't until six weeks later, but I got it on the books!
I was talking to his advocate a month ago, after getting the appointment, about how I was wanting my son tested to see if he is on the spectrum. The advocate asked me why I wanted him tested, not because he didn't think my son needed it, but to see what my reasons behind it were. I started listing off reason after reason after reason. Finally after 20 minutes the advocate tells me to write everything down and take it to the appointment with me. I have had a lady from Child Focus, three of my sons teachers, his day care teacher over the summer, my intro to psych professor, my abnormal psych professor, my sons cub scout leader, his nurse practitioner, his social worker, and the advocate all say they have suspected that my son is on the spectrum because of his 'quirks.' That is 11 people that are behind me on this!
I can't tell you how amazing it is to have people tell me they suspected it to. That means I am not "making this up" and am actually seeing things the way everyone else is seeing them. I know a lot of you tell me that what I mention about my son reminds you of your child (diagnosed or not yet) and that we have been a support system and sounding board for each other. It feels so great to not be alone in this, because when it is just you and your child you feel just that. Alone.
Here are a few of the reasons I am wanting to get him tested:
- When we have running around to do I have to tell him where we are going. If I go out of order or add something he gets upset because we are doing it the "right way."
- He has been like this since he was two.
- By the time he was three I would have to write a list of the stops and if I needed to add anything it had to be added at the end of the list.
- If there are rules that are supposed to be followed daily, at school or with is online games, and people don't follow the rules he gets very upset.
- Doesn't pick up on social cues very well even though he is mastering sarcasm.
- He can tell you everything, inside and out, about the shows he likes, the games he plays, or whatever else he is interested at that point in time.
- Is he is told to stop doing something so he can do something else he get frustrated to the point that he starts hitting himself.
- Extremely particular about his food. If it is not done a certain way, or made by a certain person, he refuses to eat it.
- He will "shut down" in situations where he is uncomfortable or mad.
- In social settings he will stop talking, stop looking at you, and stare blankly off somewhere else. he will not respond at all until physically moved from the situation.
- He has a hard time pretending that he likes a gift someone gives him. He can't just say "Thank you" and move on. He will straight up tell you "I don't like that," "I don't want that," or "it's stupid"
These are just a few of the reasons. It is not him being "spoiled" either. He is not a spoiled child. He will give you the shirt off his back if you need it, he cries when someone is hurt, he will go out of his way to make someone happy, but he struggles with the small and daily things.
I am ready to know what is going on inside my sons head and to help make him feel comfortable with everything. It breaks my heart when he gets so upset and just cries "I don't know why I do this. I hate it. I want it to stop."
I will do whatever it takes to help my child. Even if I have to do it myself because the help I asked for was never given.
