My dd was diangnosed with PDD-NOS a couple of months ago, she will be 6 in about a week. Though it has helped knowing, I still feel in limbo at times as I don't have a formal written diagnosis yet. Her ped psych wants to wait to do more testing next month when she's 6 since he has some tests geared toward 6 and up.
I have figured out some of her triggers and weaknesses, but they seem to evolve regularly. I feel like just when I get something figured out, another behavior rears it's ugly head and I don't know how to handle it. Her behavior problems go in spurts. Lilly is finishing up kindergarten and I don't know if she's getting burned out or what is going on, but she has been a battle and school and home lately. Things she used to love doing, she says she doesn't want to do them anymore. I asked her what was going on at school this week because she had an excellent week last week and a terrible one this week, she gets really upset and just says she can't take it anymore.
I can't talk to her psych about it right now. She had been seeing a therapist and we're taking a few last appointments to say goodbye and don't have anything set up with the psych, a whole other problem. I love her psych, but he's very hard to get into. If you don't make appointments a couple months in advance, you aren't going to get anything unless there are cancellations. I have now learned that and will make sure to make appointments ahead of time.
I'm just so frustrated. She can be the most wonderful, funny and loving child then something sets her off and she's uncontrollable. I sometimes avoid doing things with her for fear of what will happen. For example, we have a birthday party today. While normally a birthday party wouldn't concern me, this one does. It is the biggest, craziest birthday party you can think of. Tons of people, lunch, cake & ice cream, then swimming. The problem is, large groups and noise are one of Lilly's triggers. She can only take so much. Then there are the opinionated people that don't understand what is going on with her, mostly because I don't tell many people about her diagnosis. We've already discussed that there will be no arguing when it's time to leave. Best part is, she aparently understands more than I thought. She told me 'ok, I don't like all the noise anyway.'
Sorry this is getting to be long, I just have a lot on my mind lately and no one who truely understands. It has also been a stressful time besides her diagnosis. At times I feel like pulling all my hair out. She also has Amblyopia (lazy eye) and has to have surgery July 2nd. I need to figure out how to explain that to her about a week before it happens.
Thanks so much to anyone who actually reads this. I really am as frustrated and crazed as this post probably sounds right now. Some days I feel like my mind is going in a million different directions and I can't seem to follow one thought. I just feeling like going out where no one can hear me and just scream at the top of my lungs.
Lilly 6/7/04 PDD-NOS