Tuesday, April 2, 2013

Autism AND Down Syndrome.... Times TWO

Today, April 2nd, is World Autism Day.  Today is a day to spread awareness about Autism.  Today I think everyone has at least heard of Autism if not already has a family member dealing with Autism.  Today I want to share our story...

Our identical twin boys were born in October of 2007, both with Down Syndrome.  Our world as we knew it changed from that day on.  Tom and I have five children.  The first three children were born with perfect pregnancies and near perfect deliveries.  I had only one experience with a premature baby prior to the twins.  As I held my 4 pound nephew Nathan in the NICU on March 14, 2005 I remember thinking how tiny he was and I was so thankful he was ok coming as early as he did.  I NEVER thought I would hold a 2 pound 10 oz baby or a 3 pound 2 ounce baby a short two and a half years later and call them my sons.  The NICU experience was one of many many experiences we have dealt with since October of 2007.

The diagnosis of Down Syndrome consumed what time and energy I had left after caring for my children.  I become a sponge wanting to absorb more and more about this disability and the "expected" future for my boys.  I joined online groups, I read books, I read blogs, I reached out to the Down Syndrome Clinic at Children's Hospital in Pittsburgh, I sought after local support groups and/or families raising children with Down Syndrome.  I felt like this Down Syndrome thing was taking over my life, my thoughts, and my emotions.

Then came a day of complete and utter shock.  

I was really trying to figure this Down Syndrome thing out.. things were different with them compared to their older siblings.  Early Intervention, Therapies, lots and lots of doctors and hospital visits, evaluations, people in my house, I felt like I was the one under the microscope sometimes... The boys were 22 months old, they were doing some army crawling on the floor to get around,  they were still wobbly sitting up, they were not feeding themselves at all from the table, and they did alot of humming and stimming.  Humming and Stimming were new words I was getting to know but having a hard time understanding.  It was July 2009 and we had a routine visit at the Down Syndrome Clinic.  We spent some time with my favorite (and very missed) doctor, Dr. Bill Coehn.  We did the normal assessment of the boys and things were going the same as the previous appointment, when all the sudden Dr. Coehn asked me to take a survey of behaviors for Issac.  I filled them out and he proceeded down the hallway to the Developmental Clinic.  Upon his return he confirmed what he was thinking and gave Isaac a diagnosis of PDD Autism.  My world that I thought was consumed with Down Syndrome now had to compete with a diagnosis of Autism?!

I remember that the grief I felt after the PDD Autism diagnosis was much much harder than when I had received the Down Syndrome diagnosis.  I couldn't help but fret the double whammy that was presented to me.  My boys have Down Syndrome and now your telling me one of them has Autism too??  What will this mean for his future that I still haven't even envisioned with just having Down Syndrome??  What school is going to be able to handle a dual diagnosis such as this?? What about the other twin if they are identical??  What more can I handle?  Here was my solution:  I KNOW!... I will let the Autism specialists figure the Autism part out, I can't possibly understand two things.  I will continue to concentrate on the Down Syndrome part and ignore the Autism diagnosis, afterall, how different are the two?

Autism services began for Isaac about September of 2009 and I remained in denial.  By December we were back at the DS Clinic to have Caleb evaluated as per service providers who came into our house for Isaac observing the same things going on with Caleb and recommended we have him checked out.  Sure enough by January 2010 both boys were diagnosed with PDD Autism and I really had to accept the fact that Autism was now just as big a part of our lives as Down Syndrome was.

Three years later I can say that Autism is harder to deal with and accept than Down Syndrome.  Sometimes I selfishly try to find blame for things my boys do and I blame Autism before I do Down Syndrome.  They are non-verbal, they are not toilet trained, they hum daily to the point of  frustration to siblings and people around them, they have silly stimming objects such as a sock or a toothbrush, they rewind their favorite part of a tv show 150 times (or more) until they have plum just drove me crazy, they are aggressive towards self and others on a turn of the dime, oh I could go on and on and on.

What has Autism done positively for us?  Autism is surely a stubborn gene.  The Autistic mind tends to make people to do what they want to do when they want to do them.  If there is something that my boys WANT to learn or do, they learn or do it to the fullest.  Example, Caleb loves to dance so we got him Just Dance on the Wii.. Caleb can do the dances he likes the most with his back facing the tv and do all the moves right on cue.  Isaac loves to stim on toothbrushes by dangling and swinging them (unfortunately, not by brushing his teeth!).  He finds any and every way to steal his siblings toothbrushes.  His determination is amusing and I need to seriously just buy a case of toothbrushes.  Both boys are very visual learners.  Because of this we have taught them to read by sight words, they have proven how amazing they really are by their love of learning.  

I held them out of kindergarten for a year to allow them to grow a little and continue working very hard on their speech and social skills.  I was determined to have them speaking a few words before they started school, that did not happen.  They started kindergarten this year in the Autism Support Classroom.  There are 8 students in their classroom.  I could not be more proud of how well they have adapted and how well they are doing.  They communicate via sign language and Proloque2Go on the iPad.

I can sit and brew and wonder what the future holds for the twins or I can put my faith in God that he has big plans for them. I have chosen the second route.  I know that the Lord has blessed us with these boys for a reason.  Understanding and seeing life through the eyes of my children, I may never get to do.   But just knowing that God gave them to Tom and I allows me to think less of self and more of others, to accept that which is not accepted, to love those that are unloved.  I most certainly could not do this without the cherished prayers that I know people offer to us and without my families, friends and church support.

Hug those kiddos tight,  Autism or no Autism.

I'll end with a quote from Mr. Rodgers: 
"I like you just the way your are!!"



Dayna said...

Your boys are adorable! I can totally relate--the autism diagnosis was much harder for me to hear than the Ds. And it is much harder to deal with--making our lives more challenging.
Our son, Luke who just turned 7 was diagnosed with sensory processing disorder when he was 2 1/5 and that helped to explain why he was different from the other kids I knew with Ds. I always suspected more--but was happy when the school would reassure me that he didn't have autism. Eventually I couldn't ignore the signs any more and we got the official autism diagnosis.

I feel like the autism stole the positive aspects of Ds from him..but Luke is still our joy boy and a huge blessing from God!

Anonymous said...

Looking back, did you notice any autistic characterstics when your child was a baby? If you did and are willing, please share. We have a 3 month old and I already feel like he is greatly different from my other children and children described with typical Down Syndrome.

Renee said...

Go with your gut. If you think there is something more then there probably is. My son was 11 before he got a screening. A lot of doctor's or teachers think that you can't have autism if you have down syndrome but that isn't true. Kennedy Kreiger Institute has useful information on the difference between down syndrome alone vs the dual diagnosis. Print that and take it with you. Ask around to see what physician is knowledgeable about autism and take your baby for a second opinion if needed.

Rosa Ortiz-Lane said...

Renee, Your boys are adorable and I can relate to your feelings when your boys got diagnosed with Autism. My son has Down syndrome and Autism. He is close in age to your boys. About potty training, there are many kids just with the DS diagnosis that are not potty trained at age 5. It was a lot harder for me to accept my son's Autism diagnosis. I felt a grift and without hope. I felt Autism took him away from me. But getting the diagnosis empowered me to find the help he needs. I am fully dedicated to my son's neurodevelopment and find the right biochemical balance in his body, which it is pretty much the same interventions that many parents with kids with just the autism diagnosis are doing. It seems is working for my son. I am planning for next year a new proven therapy for kids with autism. It is called Sensory Enrichment therapy. Here is the link: mendability.com. It is a home based therapy to an affordable cost. My son has sensory issues, which have decreased after we started our intervention with non-traditional methods and focused on his neurodevelopment. I am glad I found someone I can tell about how it feels having a child with a dual diagnosis. THanks for sharing your experience!