Having Siblings With Down Syndrome: What is it Really like?

“Typical” Siblings Have a Rough Life

There is an idea out there that siblings of kids with Down Syndrome, or any special needs for that matter, have it tough.  They don’t get as much attention, the focus of the family is on the child with special needs, and they just don’t have as carefree, or fun childhood as they should.  Is this true?

Sometimes, frankly, yes!  Let’s be honest.

Rudy and Desi with some of their siblings

There are usually Dr. appointments abounding, at least at first. When Rudy Was born, the kids got to go to the Neonatal Intensive Care Unit (NICU) to see him and that was great.  But not feasible for me to try to take care of them and Rudy while he was there.  My mom was watching them, but she lives 3 hours away, and had responsibilities there.  She and Dad ended up taking them home with them. . . for 2 weeks! Not that this was a hardship on the kids. I mean c’mon, Grandma’s for a whole 2 weeks!   But Grandma’s and Grandpa’s because your newborn brother is in the NICU comes with stress!

Kids pick up on Mom and Dad’s  stress and worry, which there is usually plenty with a new Down Syndrome diagnosis! This usually creates stress and worry in the children, which really can’t be avoided.

And then there is the “extra” that any child with special needs, needs.  There is therapy, added attention, and maybe even feeding needs.

We have had to keep a constant eye on, first Rudy, and now Desi.  Like you would a toddler, but for years. . .  they are so mobile, fast actually, and yet have no idea what can hurt them!  This is a job that takes full attention most of the time, so it’s an adjustment for a multitasking mom.  It has been a project that every family member has been included in.  Sometimes this limits free time, or keeps them from doing projects they are wanting to do.

And EXTRA patience is required of everyone in the family!  Rudy has had some tough behavior issues. All kiddos go through a stage in their toddlerhood of pulling hair, or hitting, or biting.  Rudy’s was pulling hair.  It lasted a very long time.  And with the extra strength he had because his physical development was far less delayed than his mental and social development, he could really do some damage!  Dallas, being the smallest, and youngest was an easy target.

 Isn’t that the point?

Isn’t that what God says will give us joy?  To serve others, to put another’s needs ahead of our own. Most people reach adulthood without really having sacrificed their wants, desires, or needs for someone else.  Siblings offer this chance, special needs siblings offer this chance frequently and intensely.  This is where we, as humans, find our joy.  Serving others IS serving Jesus.  And the more experience we have in this area, the happier our lives will be.

Enormous Benefits

Acknowledging the struggles, there is a deep joy and happiness in relationship.  In all the hard times, in all the chaos, there is a deep bond that prevails.  Our “typical” kids have put so much into their siblings who have Down syndrome, that the happiness in the everyday things has been magnified. They have spent hours cuddling Rudy. When he was little he was a cuddle bug, sometimes this was all that was needed to sooth out adolescent anxieties.  He always played along with whatever game they invented, just being with them was enough for him.  Many happy afternoons were spent with little Rudy dressed like a girl baby, being trucked all over “France” being called Booseire´. They have cheered their brother on in all of his developmental milestones.  Early therapy sessions were like Olympic games! When Rudy coordinated himself enough to sit up for the first time there was a lot of cheering and rejoicing.  When he took his first steps, you would-a thought he was walking on the moon!  They were always around to tell everyone what he was saying when his speech wasn’t clear at all.  They are still his biggest advocates.

Have Rudy and Desi’s siblings had a less carefree childhood?  The answer would be yes, but it has been no less joyous. I see the older three still investing in their siblings, even though they are grown up and moved out, with very full lives of their own.  I see their faces light up, still, at the accomplishments of their siblings.  I see them melt with a tender hug  from Desi, or when they see her playing some sweet game. Their siblings with Down syndrome have brought them frustration, aggravation, and chaos.  But they have also brought abounding love, joy, laughter, and understanding.

 

In their own words:

The next statements are from real siblings of kids with Down syndrome

 

Dallas Racicot (19)

Sister to Rudy and Desi:

“Having siblings with Downs Syndrome is something else. It’s not all traumatically awful like some people say, but it’s definitely not all sunshine and roses with sweet hugs and sunshine like some people portray it. I can not explain to you how frustrating it was to teach myself that no, the 6 year old dragging me to the ground by my hair or spitting on, or chucking endless objects at me is not the spawn of Satan, and just plain mean. My brother could not comprehend that I was hurt by these things, he could understand the dramatic humorous effect though. on that note, I think my brother’s understanding of love is so far past any person of greater “intellect”. I think that in general, people complicate, are stingy with, and abuse love. The simplicity and freely given love that my brother and others with Down syndrome have is something so unique and pure, un-judgmental, and understanding. So, having a brother (and ‘lil baby sister) with Down syndrome has caused a lot of tears and frustration, but more laughs, hugs and love than most people get in a lifetime, and I couldn’t trade it for the world ” ∼ Dallas Racicot

 

Dallas – Rudy – Katie

 

By Eva Racicot:

Sister to Rudy and Desi

“Having a brother and sister with Down’s syndrome is one of the most frustrating and challenging things; but it is also more beautiful, joyful, encouraging, and precious than your heart can stand sometimes. ”     ∼ Eva Racicot

 

Eva with Rudy

Eva with Desi

Jack Marshall  (14)
brother to George (who is 10 and has Down Syndrome as well as registering high on the Autism spectrum):
“Having a brother with down syndrome and autism is really challenging. Sometimes you just wish you had a normal brother. But it’s a blessing to have a brother even if he doesn’t talk. I am very happy to have George as my brother.”   ~Jack

Sam and Jack Marshall with their brother, George

George’s 10th birthday!

Sam Marshall (16)
brother to George (who is 10 and has Down Syndrome as well as registering high on the Autism spectrum):
“Having a brother with special needs can be frustrating at times and sometimes it is hard to appreciate him. But at other times he can be really sweet  and loving and helps me appreciate how blessed I am.”   ~Sam

 

Their mother, Yvonne writes about George, and her experiences with therapeutic play.  She works tirelessly to bring out the best George. You can read more about natural play therapy and more at her blog.

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A great book for Siblings:
Let’s paint the octopus red

 

Posted in Down Syndrome, Family, Special Needs, Uncategorized.

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