View Full Version : Feeling overwhelmed by all the resources - how do you sort through it all?

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.

12-21-2012, 01:23 PM
HUGS. DS2 has some sort of ADHD/sensory issue and I totally agree it is overwhelming!! Sending you PT!

12-21-2012, 04:16 PM

Things take time. Schools in particular move at a snail's pace even at the best of times. I think if you can get things set up my mid January, that's actually really fast!

Also, despite the well meaning advice to read up on things, it is totally OK to say you're done for now with reading and you need to take a break and just live your life for awhile.

It is also really easy to fall into the trap of thinking that you have to everything all set up and perfect right now. It doesn't work that way. You may try something and it doesn't work, so you try something else. Or maybe it works for awhile and then stops working. Maybe he has a crappy teacher this year and therefore needs a lot of "support", but then next year's teacher is fabulous and miraculously, the need for those supports disappears.

The biggest thing I have learned over the years about dealing with my older DD's issues and needs is that nothing is static. It's all a process. Needs change, teachers change, schools change, expectations change, etc. There will be times when you and or your DS will simply need to take a break from intervention. Even too much intervention is not necessarily a good thing because you have to give each thing a chance to work or not work.

So it probably feels really frustrating and overwhelming right now, but I have learned that patience is a virtue. To pile on more platitudes ;) it's a marathon not a sprint, so give yourself time to just breathe and pace yourself.

12-23-2012, 12:39 PM
Thank you both for your encouraging and helpful words. I was a bit of a mess on Friday, especially after speaking to the psychologist. DH and I talked about it on Friday night and he calmed me down a bit and thinks that once we get moving with some of the services, that things will start to fall into place.

Now that we are on winter break, I've decided to stop stressing about school and just let DS enjoy the time off and doing activities he enjoys. I'm still disapointed that things aren't in place for the first day back but it does look like it will happen within the first week. Seeing as it is really out of my control, I'm not going to stress about it.
We are going to take things one day at a time and hope that we see some progress even if it is slow.
Thanks again.

12-23-2012, 02:24 PM
We were at that place earlier this year. DS is going to be 4 soon and we initially got the diagnosis from a reputable hospital in the area but they did not give specific recommendations. The school district/IEP is/was a fight, which I now believe is the case always at the preschool level, esp for higher functioning and Asperger's. So, we had to get another private psychologist to break it all down for us. And while we continued/continue to negotiate with the school district, I started to work on getting each of the recommendations in place. Here are some things I did or helped:
- I joined a local support group - there is a very active and closely guarded yahoo group in our area and I found the archives to be invaluable for information on local providers for ABA, speech and OT and even how to pay for them. I also introduced and asked several questions and they were able to chim in with their experiences or advice. A board like this is great for general advice, but for specifics, do look for a local one.
- I asked the psychologist for recommendations for speech therapists, and called each of them. turned out they all had full schedules for this year, except one, so we got started with them (after researching of course).
- ABA was a bigger beast since there is so much variation in experience, expertise, methodology and unfortunately how much they lie :( One of the good things about the recommendations from our psychologist was that she had felt that a naturalistic approach like floortime would be good for DS, and had some ideas too. That helped me in understanding whether or not a company would be a fit or not.
- Also, we knew that social groups would be very important and had some ideas which we sought her advice again and enrolled him in them.
- OT was the last one because it unfortunately took a back seat due to the other things. But it is very important, and we now have it in place. However, we continued to do OT type of exercises at home with him. I had posted about hiring an OT student from a local university which was not a great experience in the beginning but turned out to be great after much hardwork from us and the student, and we are so happy we did it.
- I also continued to attend local in-person support groups to seek out parents, to commiserate, to get information, to see how their expereince in those initial days was.

It was not easy, and even now, I feel like I am sitting on pins and needles regarding the services esp with ABA since this is one business where there is a lot of movement of people, and you don't know if the next person who comes along would be a fit. Additionally, you do need to make sure that the service providers are understanding the issues, so it takes a lot of iterations and conversations to get it right or to get to steady state. But you WILL get there.

I did buy a number of books (floortime, denver model, rdi, ABA, PRT, etc) and read them but haevn't yet read one from cover to cover LOL!

One thing I feel helped us in coping was to ask for strategies for very specific issues (like what do we do when he asks questions repeatedly?) and would be very diligent applying them, we would also share strategies with all therapists esp if it seemingly works for us to be sure that he gets the same message everywhere. In this regard, the thing I haven't been able to get to happen is to have one person who takes care of the cross communication and am having to do it myself so far. I do prefer a professional to do it with me in the background since then it becomes a conversation between equals/professionals and not between a client and provider KWIM?

Also, like I mentioned in a previous thread of yours we decided not to share with anyone except professionals, and people at support groups of course.

You probably gathered by now that we don't have much (actually, anything!) from the school district. it's been a fight - they declined all services initially, then offered some (very minimal) based on the original diagnosis, then offered more based on the next set, and none of it was really appropriate for him! we are still in the middle of it all. Our goal as parents is to get it into a good place for kinder and for preschool, we want to do it all privately, through insurance. Of course, your case is different since your DS is older.

sorry, if I have been all over the place, but hope it helps.