What to do when you have a special needs child?

Question

My son is 11. He was diagnosed as having static encephalopathy, which means an unchanging defect of the brain. It happened during the developmental process. My problem is that a lot of times, I feel like I am going to lose control with him. My other biological child is "normal", and I have never met another parent with a child like him. He is high functioning, attends school with inclusion, and they make some accommodations for him. My problem is that each day, I feel like I have to teach him the same things over and over and over. There doesn't feel like there is any day that I don't have to walk him through what to do step by step. From getting dressed for school in the morning to bathing at night, I feel like I have to be there for him every moment. Is this normal? Am I normal to feel this way? Are there resources or support groups that are available to me that I just haven't seemed to be able to find? I feel like I am going crazy! Any honest help would be appreciated!

Update:

My son's doctors are 100 miles away. I have to drive that far each time I take him to the doctor. It is not feasible for me to join support groups there, which are all of the ones our specialists know about. And these are the only specialists I'm aware of in my state. Are there websites I haven't found yet? I've done all of the research I can find, and honestly, it doesn't help much. I get stuff like fetal alcohol poisoning and cerebral palsy, which neither are what my son has. I'm just at a loss on what else to do!

Update 2:

thanks, judo. I'll look into that!

? · Accepted Answer

There are online communities that can point you in the right direction.
You can post questions of this nature, as well, in the People With Disabilities section here on Y!A. To get there, go to the Y!A home page, go to society and culture heading, then cultures and groups option, then the people with disabilities option. There are very helpful users there, but also some sick and twisted trolls, so be guarded.

You also may want to look into your local department of Health and Human Services for groups in your area or even respite care ( a certified volunteer comes to watch your special needs child so that you can run errands, do chores, or just get a breather to get your bearings straight).
Good luck.

Someone · Answer

I also have a special needs child and I'm with you every step of the way on everything you say.  I kept having to remind myself that she isn't the same as a 'normal' child and that she does still need help getting things done.  It took a very long time for me to learn to have patience with that - I also have a very, very smart older son who did everything well ahead of time, so slowing things right down for my daughter and going at her pace was a bit frustrating at first.  Now I just accept and love her for what she is.  Yes, it can be frustrating at times (especially if we're in a hurry), but she is what she is and it's up to me to adjust to her, not the other way round.

Anyway, good luck.

marqueen71 · Answer

Ask your doctor and the local hospital for a recommendation for a support group.  Ask the school.  Google the name of the brain defect he has and then see if the national support group has a local affiliate.

What to do when you have a special needs child?

3 Answers