Special Health Needs Child?

[dnjkilbey]

HI everyone
I have a son who just turned 1 yesterday and is considered to be a "Special Needs" child. He had an unexpected brain hemmorrage and had emergency brain surgery when he was less than 2 days old. He is missing part of the right side of his brain. Today is the 1 year anniversary of the surgery. He has a lot of appointments and therapists and now more referrals and doctors to see. I want to do the best for my son and my daughter. Everyone says if you look at my son you could never tell anything was wrong with him. He does have developmental delays, left sided weaknesses, sensory issues and eating issues (he ONLY breastfeeds!). Since it has been a year everyone wants to see him and re-evaluate him. He is doing good and the outcome is not life-threatening, but completely uncertain. Does anyone else have to go through the tons of appointments? It is getting hard to go to every appointment and see that everyone is like, Oh he doesn't talk or walk or point to objects, etc. etc. It is finally starting to wear on me. I love my children. All I wanted to do was have my son home with us and be a happy loving family, which we are. But since I am a SAHM I feel like I'm not doing enough. Between all the appointments and making sure we are using all of the resources out there that are available, it gets pretty hectic. How do you handle everything and keep your head screwed on straight or at least screwed on?

[Lifestar]

Hi Janelle,

Sorry I haven't been around to check on posts more recently.. Things are so hectic round here with the end of the school year.

I know what you mean about the crush of doctor apointments and the pressure of other people's expectations of our kids..

My younger daughter had some special issues growing up. She not only had a sensory disorder that made the worls unbearably noisy for her, and made anything touching her unbearable... she also has Juvenile Rhumatoid Arthritis. She has always been a little bit different than her peers.. not terribly different, but just enough "off" that strangers seemed to feel they could comment on her public behavoirs or my parenting of her.. It was always stressful. Thakfully she outgrew the sensory issues ..and is for the most part able to handle the world around her.. altough she is more senitive to sound and touch than most other kids..

So in a way I can understand some of your frustration...

I still seem to always have doctor's apointments for my kids ( or me, I have disabilities too,....) and it is exhausting.. but you have to do it, because it is what needs to be done.

You might waht to consider finding a Brain Injury Support Group. Ask your son's social worker, physical therapist, or your local health department for a referral. They are avaiable in all 50 states.

Sometimes the people closest to you just can't bear to hear your anguish.. because there is nothing they can do to ease it.. But a support group is uninvolved, and can be a great resource. It's almost as good as a therapist! lolol!

Anyway, I hope you can find a local network of people who can understand what you are living. You are NOT alone in this ...

Valerie

[dnjkilbey]

Thanks for the reassurance. It is starting to get better now that we are getting over the 1 year hump. In 32 days (counting weekends) we had 18 appointments and our last one was this morning.
I'm glad it is just going to start slowing down again.