What did you do first?

[btass]

I was just wondering what was the first thing you did when you realized that your child might need help?

I have a DS61/2 that has pragmatic issues that showed up his first year in Kidergarten. He just finished his second year in K and starts grade 1 in September. He has an IEP in school. I trust the school system, should I?

I feel like maybe I should have taken him to his doctor or something. from what it seems with all of the posts and websites I have seen, he should go to the doctor but I think I need help with what I should be doing so that he gets what he needs.

Any info would be appreciated!

 

[MommytoMJM]

If you are thinking you should take him to a Dr, you should. The other thing that I find that helps me as a mother of a Special kiddo is to learn as much as possible myelf about her issues so I can make informed decisions and suggestions rather than just trusting someone else. Also, it helps to talk to others, so please, feel free to PM me or talk to us here anytime!

 

[MomOf2DisneyKids]

If you are thinking you should take him to a Dr, you should. The other thing that I find that helps me as a mother of a Special kiddo is to learn as much as possible myelf about her issues so I can make informed decisions and suggestions rather than just trusting someone else. Also, it helps to talk to others, so please, feel free to PM me or talk to us here anytime!

I'm just going to ditto all of that! Good luck to you!

 

[Ambassador]

Trust your instinct, and by all means consult your doctor. Start with your regular pediatrician, and see other specialitsts as recommended, or that you fell may be helpful. There are many areas and issues to consider in the complexity of a condition: neurology, behavior, gastroentrology, nutrition, medication and more.

Unfortunately, it seems that these days we must self-administer and demand good health care. Knowledge and persisitence are your tools to successful diagnosis and treatment. God bless your family.

 

[itsagloomyday]

ITA with all the above posts. As a mother of a child with multiple special needs, it can all get very confusing and overwhelming. Your child's pediatrician is the 1st place to start and can coordinate care, provide referrals, etc.

With an independent evaluation and documentation by MD's, therapists, etc., you will also have more leverage at IEP time to get the services your child needs. School systems don't always have the knowledge to understand what type or intensity of therapies will benefit your child's specific issues. Knowledge is power and you can better advocate for your child with as much information as possible.

Keep all independent evaluations and school evals in a special file at home. It makes IEP time and referrals to specialist go more smoothly.

Good luck!

 

[btass]

First, I have to say a giant THANKS EVERYONE!

I went to an SES (Special Education Services) Coffee on Tuesday and it hit me that I am not really doing as much as I should for my DS. I think that maybe I was waiting for the School to tell me what I need to do and I have realized from that coffee that I need to do it, the school won't just tell me to do something.

Well, with time and work comes knowledge and knowledge = power so I guess I have some work to do!

Thanks again


PS - I think I understand how my Mom felt when I was growing up, pretty clueless at what to do but thank heavans there is the internet and people talk about this stuff more now then they did "way back when"

 

[SueM in MN]

Looking back, with the perspective of being the mom of a 20 year old with mutliple disabilities, I wish we had trusted the school less. My DD had multiple disabilities and some of the school people had very little pertinent experience. I think a lot depends on whether you have a good feeling about what is going on in school and what progress your child is making. I didn't really have a good feeling (Trust your instincts, like the others mentioned).

It's much easier now to get information with the internet than it was when my DD was little. I wish I knew then what I know now. She would have gotten a lot better care.

 

[have2getaway]

The first thing I did, honestly, was cry a lot. Then, I got over it and realized that I needed to do everything I could to help my son. I constantly researched disorders conditions, etc. Like other posters, I felt it was helpful to go in with a knowledge base so that I could ask questions and ask "Why isn't it this?". We were originally told that our son had Aspergers. He has most recently been diagnosed with high functioning autism and he has pragmatic issues as well (NVLD). You have to not let it consume you though.

I'm learning that with many schools you have to put pressure on them. You are your child's best advocate! Take your son to specialists on your own, or with your insurance, and bring in the documentation. Our son was originally receiving the very basic services, but they have now been expanded to the maximum, simply because we took him to a credible evaluation center where they detailed exactly what services he should be getting. Then, we were able to say to the school that someone says he needs a, b, and c--and he got it!

You can certainly start with your physician, but my experience with our pediatrician was not very successful. Their expertise is with health concerns. They didn't think anything was wrong and were shocked when we told them about his diagnosis.

Good luck to you and your son!