Tuesday, February 9, 2016

What Siblings of Children With Special Needs Know

photo credit: susan schmidt
Siblings of children with special needs are perceived as one of two personalities. Either the Bitter Cynic or the Martyred Saint. In the mast majority of cases, neither is true. Don't get me wrong. Being a sister to Addison is hard. Probably one of the hardest things I have ever done. And there are a bitter few who choose to wallow in self pity and ignore the obvious blessing they have been given.

And then there are the rest of us. But we are no saints. We are playing the cards we've been dealt. You either play them well or you fold and live with the consequences. And, contrary to popular belief, the majority of siblings I have had the good fortune to meet are remarkable people. They love their sibling, realize their life is better because of their sibling and are working to make the world a better place.

Being a sibling to a child with special needs is intense. It's something you cannot experience without being changed. And you learn a few things about life along the way.

Siblings of children with special needs know...

Their sibling is, first and foremost, their sibling.
And you, as a sibling, need time to enjoy your brother or sister as just that...a brother or sister. When your sibling was born you anticipated the joys of having a brand new friend. The reality is, most of your brother or sisters life is spent in therapy and doctor's appointments. But beneath the diagnosis is a child who needs time to be a child...to play, explore, be stupid and silly and indulge in all manner of nontherapudic adventures with their sibling by their side.

Their sibling is capable of more than you believe.
Carmella (4) is an inspiration. She pretty much refuses to believe Addison incapable of anything. If she is coloring, he has no option but to color with her. If she wants him to communicate she will make him sign. If music is playing she expects him to dance. She believe he can and so he can.

The value of every accomplishment. 
This past week Addison had his Early Intervention evaluation. At two and a half he tested on level with a typically developing child of 18/19 months. For many this would be discouraging. But we celebrated. We have seen him work hard for every inch of ground he has gained and we couldn't be more proud of how far he has come.

Never take for granted your ability. 
Addison spent six months learning to sit up, two and half years learning to crawl and, at almost three years, he still cannot eat. He is amazing at ASL and says a few words but he cannot yet communicate by speech. Every day I perform all these basic functions without thought. For every ability you have, give thanks. Nothing is guaranteed.

With ability comes responsibility. 
It's pretty amazing to note how many siblings end up working as therapists, social workers, special education teachers, doctors...professions directly involved in helping people with special needs. One of the founders of the Down Syndrome clinic at Boston Children's Hospital is brother to a young woman with a diagnosis of Down Syndrome. When you have a brother of sister with special needs your realize your duty to use the gifts you have been given to love and serve without limitation.

There is great injustice in the world (but there is also great love).
Being a sibling gives you a front row seat to the injustices your sibling will experience. From social stereotypes...to ignorant remarks...to the political inequalities of people forced to work jobs below minimum wage in order to receive benefits...and the ineligibility of anatomical gifts for people with special needs... It is sobering to reflect on the hostility of the world in which your sibling will live.

But as a sibling you also get a front row seat to the love of many. From the therapists who faithfully work with Addison...to the doctors whose genuine care has made his life better...to the families in our Down Syndrome group who encourage us to believe in his potential...to the friends whose prayers and love have carried us through so much...to the small children who have welcomed Addison as a friend... There is so much love. Never loose track of the light.

Life is not about you.
It really isn't. There is so much more than you. There is so much more than your goals and your plans and your life. When you are sibling to a brother or sister with special needs there will be disappointments. There will be missed events during hospitalizations. There will be family plans canceled because your sibling cannot handle the situation. There will be times when your life will be put on hold. There will be pain. There will be so. many. tears. But it will always be 110% worth it. And from loving your sibling you have learned there is something greater. People hurting. People suffering. People lonely. People in need of love. People.

If you are a sibling or loved one of a child with special needs I would love to hear what you would add to this list! Let me know in the comments. 

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