mikeys_mom
12-21-2012, 12:29 PM
I am just feeling completely overwhelmed by all the information being thrown at us these days. All the professionals keep telling us that DS is a complex case and especially with Aspergers, each child is different. They keep telling us to read up and inform ourselves about what exactly Aspergers is. Also, to complicate things he has a non-verbal learning disability, which we also need to educate ourselves about. So, I take all the recommended books out of the library and have been reading up on this for the past 6 months. Yet, I still have really no idea how to parent my child. Seems that everyone has a different opinion about how to handle things. Well, that is not really a help. Plus, I feel like all the treatment resources are moving at a snail's pace and it is making me completely anxious.
We have been dealing with the dev ped regarding the Aspergers issue. She gave us a whole list of resources and highlighted the ones she thought would be best for us. Followed up with things the next day, made a bunch of phone calls, but with the holidays coming up, nothing is going to happen until mid-January. Once things fall into place, in thoery we should have some good resources and therapies to work with but it is hard to see my child suffer and not be able to do something ASAP.
Then, there is the psychologist who did the psycho-ed assessment with whom I've been chatting informally on and off and he keeps telling me that we need to educate ourselves and really think about school placement for him. He is in the community so he understands the religious issues facing us by moving schools. But he also says that no school will be perfect. He also says that it is so difficult to determine what is a behavioural issue due to the Aspergers and what is truly a difficulty due to the NVLD. He says it's not always clear cut and we may need to make decisions as parents. It was an informal conversation (he had called to talk about timing of a meeting but I asked a question and we ended up talking for a few minutes) but I was even more confused at the end. He offered to meet with us after the break.
I had really wanted to get things in place for after winter break but there is a nasty flu bug going around here and both the psych and special ed co-ordinator were out sick most of this week so nothing really got done. We have a meeting scheduled for Tuesday morning, right after the kids get back from the winter break. I really just want some answers and to have a concrete plan but I don't and I really don't even think that after the meeting we will.
The only redeeming factor in all this is that they are on break for 2 weeks after today and he does much better during vacation time so long as we don't spend too much time sitting around the house, which we don't plan to do. But, even at home we have to be really careful not to set him off and DD1 who is super perceptive has already figured out that he gets away with stuff that she can't. It upsets her.
I guess this is more of a vent than a question but I'd appreciate hearing from anyone who has BTDT as to how long it takes to sort through everything and how do you wade through the piles of information and figure out what applies to your child? It is really terrifying thinking that we are making decisions that are potentially affecting his long-term functionality.
We have been dealing with the dev ped regarding the Aspergers issue. She gave us a whole list of resources and highlighted the ones she thought would be best for us. Followed up with things the next day, made a bunch of phone calls, but with the holidays coming up, nothing is going to happen until mid-January. Once things fall into place, in thoery we should have some good resources and therapies to work with but it is hard to see my child suffer and not be able to do something ASAP.
Then, there is the psychologist who did the psycho-ed assessment with whom I've been chatting informally on and off and he keeps telling me that we need to educate ourselves and really think about school placement for him. He is in the community so he understands the religious issues facing us by moving schools. But he also says that no school will be perfect. He also says that it is so difficult to determine what is a behavioural issue due to the Aspergers and what is truly a difficulty due to the NVLD. He says it's not always clear cut and we may need to make decisions as parents. It was an informal conversation (he had called to talk about timing of a meeting but I asked a question and we ended up talking for a few minutes) but I was even more confused at the end. He offered to meet with us after the break.
I had really wanted to get things in place for after winter break but there is a nasty flu bug going around here and both the psych and special ed co-ordinator were out sick most of this week so nothing really got done. We have a meeting scheduled for Tuesday morning, right after the kids get back from the winter break. I really just want some answers and to have a concrete plan but I don't and I really don't even think that after the meeting we will.
The only redeeming factor in all this is that they are on break for 2 weeks after today and he does much better during vacation time so long as we don't spend too much time sitting around the house, which we don't plan to do. But, even at home we have to be really careful not to set him off and DD1 who is super perceptive has already figured out that he gets away with stuff that she can't. It upsets her.
I guess this is more of a vent than a question but I'd appreciate hearing from anyone who has BTDT as to how long it takes to sort through everything and how do you wade through the piles of information and figure out what applies to your child? It is really terrifying thinking that we are making decisions that are potentially affecting his long-term functionality.