What about the "typical kids" the siblings?

What about the "typical kids" the siblings? Experts say the siblings are affected in many ways including:

1. They sometimes feel guilty that they are okay.
2. They sometimes feel like they are responsible for their disabled sibling
3. They sometimes feel stress because they know the adult they rely upon, the care giver, is under so much stress.
4. Often they begin making life plans based upon knowing they will have to be responsible for their sibling, a massive responsibility for a child to ponder.
5. They sometimes get angry and act out because they are angry about having a special needs sibling. Or they act out just to get attention.

On an up note....many siblings turn out to be professionals in the field because they have lived it.

Just after Nicky was diagnosed I met a wonderful pediatrician, Dr. Leslie Richards, who worked at our local regional center. When we met I expected her questions to be about Nicky, but instead they were about Evyn. She really wanted me to begin thinking beyond Nicky and his diagnosis to thinking about how not only was Nicky's life never going to be the same, but neither was my daughter Evyn's. She talked about her grown brother with Autism, for whom she now provided the primary support. She really wanted me to be clear that Evyn's view of the world would forever be changed because she lives with a severely disabled child. I did hear her and I quickly located what are called "Sib Shops" and enrolled Evyn in the program. In these programs the counselors provided lot's of fun activities and encouraged the children to talk about their siblings. They worked very hard to create a fun atmosphere where they could talk if they wanted to, or just listen and have fun. There were always some kids who wanted to talk and others who did not, but in the end whether the kids were listening or talking they heard the same thing "We all have special needs siblings and we are all surviving" and "No matter how bad it seems at your house it was worst someplace else". These messages really did seem to help Evyn feel less isolated and I'm really glad we were able to get her involved early.

Over time I have been able to stand back and see for myself how having Nicky as a brother really has affected Evyn. The contrast in their lives is sharp and not matter how much she understands, it does not make the challenges go away.

FACT: Nicky gets so much attention ALL THE TIME.

REALITY: This is what I hear from Evyn (sometimes verbally but mostly without words)

1. Therapists come in and out of the house to help her brother. They spend hours praising him for every successful task. " Yes Nicky, Excellent Nicky, Good Job Nicky" - and she can barely get help with her homework.

2. He always has to have the attention. He's always first. I wish he would go away. Yeah, he can't be left alone because his understanding of safety is almost zero - so someone always has to be with him. I hate it, he always gets the attention.

3. He has a super restricted diet so we always have to pick special food for him. The restaurants we go to depend on him, the trips we take have to consider him, the places we avoid...are becasue of him. What about me and special food for me....Nicky Nicky Nicky it's all about him.

4. Mom is so into "Autism" not only does she spend more time caring for Nicky but she spends so much time learning and helping others...Nicky Nicky Nicky....Autism Autism Autism. Enough already.

5. Mom can't just leave and hang out with me, everything works around Nicky's precious schedule. Nope, we can't go now Nicky has theraphy, No we can't go now Nicky is having a bad day, No you can't sleep in the bed with me...Nicky doesn't feel good...Nicky Nicky Nicky.

Knowing this does not take it away. I knew this so I tried to not ask Evyn to look after her brother even as much as her typical peers look out for their siblings. Until we became a one parent home I was able to do this, now Evyn has to help and she is the best therapist in the world. She knows her brother and she does not take any stuff from him!

I talk alot to Evyn and I know intellectually she understands and I know that it is just not easy feeling like number two, even when you love your brother and you know "it's just he way it is".

Notes to myself and others...

1. Try to get 20 minutes a day in with the typically developing sibling every day... doesn't matter what you do.

2. Locate a "Sib shop" in your area and if you can't find one, create one.

3. Have friends and other family members take the either of the children out, alone. They each get one on one time that way.

4. Let family and friends help. Invite people over and create opportunities for the atmosphere to be light and happy and not focused on care giving.

5. Show the typically developing sibling that you are taking care of yourself, so they don't have to worry about you too.

6. Take care of yourself and treat yourself, so the typically sibling does not become a martyr. Showing our children that we are important and not just caregivers teaches them that it's okay to take care of themselves.

7. Try not to take everything so seriously

8. Laugh ALOT at yourself and everyone...togetehr as a family.