Who manages your child's care?

iVillage Member
Registered: 11-07-2004
Who manages your child's care?
11
Fri, 06-23-2006 - 8:35am

Ok, our child psychologist diagnosed my son with Asperger's. She stated in her diagnosis that he should be evaluated again by an OT (he was diagnosed with Sensory Integration Disorder at 3 years old and had therapy) and he should be evaluated by a speech therapist. Along with that he needs social skills therapy. What I want to know, is who is my team captain in all this? We are done with the psychologist and now need to see all these other people, who manages this? My primary pediatrician? Or me?

I did make an appt with our pediatrician to go over the diagnosis and get our referalls for these specialist evaluations. We do have a great pediatrician and have been with him for 12 years (since my oldest was born).

It just seems like so much to do and with my lack of experience I am not sure if I know what exactly to be doing?

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iVillage Member
Registered: 02-20-2001
Fri, 06-23-2006 - 9:08am
I feel your confusion!

 


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iVillage Member
Registered: 11-07-2004
Fri, 06-23-2006 - 9:20am
I was afraid you were going to say that! My biggest problem is I misplaced the instruction manual on my son. I keep asking God to get me another copy.
iVillage Member
Registered: 01-16-2006
Fri, 06-23-2006 - 9:57am

ME...and DH a little, not because he isn't interested etc..but he travels extensively for work 8 months of the year so its hard for him to stay on top, but he will call after meetings etc to see what is going on, and when he is home he attends everything.

my 'manual' is this board, the ASD board, bari on the speech board, and some friends who work in these areas, just not directly with my kid....by that I mean I do research, ask questions, and then I ask uninvolved with my child people...for example, I have a very good friend who is a speech-language pathologist so I ask her lots of questions about things i find or am told - she gives me objective feedback about them.

its hard but since i know DD best....

i USED to say i could do anything with a law degree except practice medicine.....

iVillage Member
Registered: 02-20-2001
Fri, 06-23-2006 - 10:08am
LOLOL....maybe after you find yours you can help me find mine!

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iVillage Member
Registered: 03-26-2003
Fri, 06-23-2006 - 10:46am

I use to yell that exact thing at my hubbie when son would wake us up at 3 am and I told him it was his turn to get up with the baby.......he'd come back in the room (with the baby still screaming in his crib)......"you take care of him - I can't make him stop crying"......I'd yell back....."I don't know what he wants/needs either.....do you think I am hiding the instruction manual on him from you?!"

I WISH they came with instructions.......

and I agree.....I believe we, as parents, are the team captains - the resource coordinators......

Christie

iVillage Member
Registered: 03-26-2003
Fri, 06-23-2006 - 10:49am

You are the team captian.

It is nice to have one goto person who understands the spectrum and you can get advice and ask questions of. I have a person like that and I have been at this for years. It is a clinical psych who specializes in ASD's. She sees the kids for play therapy (Cait not often anymore) and me for individual. Part of the individual is helping me keep all this special needs mom stuff straight and give me advice. When you are the mom and stuck in the middle it is hard to see with objective eyes. She is that for me. We have used a neuro for this in the past whom if not on meds, we see 1 time per year.

However, that said I am still the captian along with my DH as co-pilot/captain. (He helps make the decisions but I am the one who keeps track and does 85% of the meetings and organization). I am the one who is here everyday, who keeps track of who does what when, who needs what, etc.

To do this you need #1 to be organized. It is easier just to give you a link to an article I wrote on organization than to re-write it so here ya go. http://www.asdrendrewolf.org/artlsure/organize.htm

Next, make a chart or checklist for your childs needs and your concerns. I like to do this to brain storm and get things on paper. What are your biggest concerns? What are some examples of those concerns? What testing has been done for that? Who should they see for that? What needs to be done? Then leave a blank collumn for what is decided or started when you get to that point or even just to check off that you have or are addressing that. I do this on occasion to get myself organized. There are 4 million things you can do for a child with autism and not all of them are going to work or be needed by any one child. You have to determine what is most important for your particular son and what he needs.

If you break it down into the smaller parts of what you need to do it doesn't sound as overwhelming. It is easier to check off and say "ok, I need to take care of scheduling an OT evaluation, speech evaluation, and I found a good place for social skilsl that taks my insurance" than to say "what am I going to do for my sons autism". Sounds like the psych gave you some good ideas on where to start with that.

Last, take care of yourself. This is really important! If mom ain't happy, no one is happy. You are the main person on your sons treatment team. If you are not healthy it is going to be very hard for you to manage that treatment effectively. Many of us autism moms get stuck in the trap of trying to become supermom without refilling our super tanks. We revolve our lives around our kids and autism and trying to fix everything. This is a marathon, not a sprint. To keep yourself going you need to take care of yourself too.

Renee

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iVillage Member
Registered: 01-19-2005
Fri, 06-23-2006 - 11:27am

As usual, Renee gave great advice.

Yes, I am team captain too. Isn't it nice to know we have to become experts in ST, OT, neurology, psychology, nutrition, ABA, PT, biochemistry, and pharmacology?! I didn't know I was that smart?! LOL!

But I simplified things for myself by selecting a therapy/medical center where Eric can go for his neurologist, ST, and OT. At this center, the ST & OT communicate about their joint clients on a regular basis (weekly) and the ST/OT dept meets with neurology to discuss clients monthly. However, on a week to week, day to day basis, I am the one who sees everyone and coordinates as necessary.

You will need to find out you who among the professionals is a good one to bounce off ideas and get advice. For us, it is the neurologist. He sees Eric every 4 mos. and was the one who diagnosed him. He has given us great referrals for all kinds of things, like an advocate to help with IEP's, even an ASD-friendly dentist and eye doctor. Since he is an ASD specialist and been around a long time, he is great. Hopefully over time you will find who that kind of person can be for you.

The school is a whole different entity. I am really the only one there leading everything, although Eric's teacher is a good communicator and responsive to email.

I even created a joint list on my email called "Eric's team" which includes the email addresses of all the people mentioned above. There have been times when something is going on with Eric that his teacher and all the professionals need to know and sending one email is easier.

BTW, if you find that manual, let me know too!!

Katherine

iVillage Member
Registered: 11-07-2004
Fri, 06-23-2006 - 12:40pm
I guess the more I learn, the more confidence I will have. Hopefully, I will get to know some people that can be helpful to our situation. I know this board is absolutely great!
iVillage Member
Registered: 11-07-2004
Fri, 06-23-2006 - 12:41pm
What wonderful information! Thank you so much. The article was very helpful. I am reading the others too! I really appreciate your input.
iVillage Member
Registered: 11-07-2004
Fri, 06-23-2006 - 12:44pm

You know, we have seen our pediatrician, the child psyc. and will be seeing the speech and OT therapist. However, we haven't seen a neurologist. Should we? Has your child had a MRI? My mom saw a special on tv the other day that said a MRI can show that a child has Asperger's or autism. I thought that it rarely shows this but that wasn't what my mom understood it to be. Do you know?

Thank you!

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