One Mother's Story with DS-ASD

The drive up the mountain side was still difficult. Of course, I never feel that safe when careening around the tight curves of the Berthoud Pass. I had hoped the clear summer road conditions would make the trip less stressful. I was wrong.

As I drove, and kept glancing over to my right side, to see how my first-time-ever front seat passenger was doing, it brought tears to my eyes. Tears which I dared not show to him, or all bets would be off.

He kept his hand positioned over his mouth with his short fingers reaching up toward his eyes, in his usual "anxiety position" as it is known around our house. Our conversation, as it were, was intermittent, yet repetitive for the almost two hour trip.

"You did it Brennan! You did your shower all by yourself!"
"Yeah." was his response.
"And, teeth, ears, and new shoes!"
"Yeah." he would re-state.
"You're a big teenager Brennan! Going camping! Just like Buddy & Lizzy!"
"Yeah."
"We are so proud of you! You get to go to camp for a sleepover too!"

And so it went. Neither of us knowing what to expect, and both of us equally anxious. In between our cryptic snippets of conversation, I kept praying the rosary and thinking back over how far we had all come, and how incredible it was to think of where we were headed on that beautiful summer day!

Brennan has Down syndrome and Autism Spectrum Disorder (ASD). He finally received the diagnosis of ASD when he was 6 years old. Up until then, we had no idea why his "Down syndrome" was so different from all the other kids we had met through the special education programs, and could not understand why he had so many transition, sensory, social, and communication issues. It might seem sad to some parents to learn that their child has an additional diagnosis, but not for us, we were relieved! It helped us, and his educational team, to finally understand how we could work with the ASD to help reach him!

It is estimated that 10% or more of individuals with Down syndrome have the co-occurrence of ASD. Having both conditions adds a new set of challenges, beyond the standard more well-known expectations of living with a developmental disability, like Down syndrome. For me, it's kind of like a disability on steroids!

I imagine there are many families who have a son or daughter who are in a similar situation as our family. Maybe their child is younger, or older. Either further ahead on their journey, or wondering what to expect and searching for hope. I can share with you that we have gone through many difficult times, over many years. For a long, long time, I never thought things would improve, and assumed we would just remain in the "isolation," "left out of life" mode. But thankfully, I was wrong.

It seems like it happened slowly when I look back, but truly, every day, week, month, and year, we all keep learning a little bit more about what types of things helped Brennan come out of his ASD shell, and help him, and us, enjoy life. At times it feels like a study in nuances. We pay extremely close attention to any "triggers" that upset him which could be related to places; transition times; foods; videos; too much conversation; sounds; people crying; crowds; even particular individuals, all can make a difference in whether Brennan will be successful in a given situation. It is kind of like being a detective of sorts. The important thing is, the more we pay attention and understand the subtle signs and triggers, the better our chances are of helping to make a situation work out, and even be enjoyable for us all. Sometimes, the joy amounts to merely a brief moment, for instance, when Brennan would say "Hello" to a friend of ours after Mass, before he would dart like a bat-out-of hell to the safety of his car seat. Leaving our friend, and anyone else in sight, wondering what was wrong with our son, and why we allowed him to act this way. Ahhh, some people just don't understand and wish they could; others don't understand and don't care to.

And so it goes, so many different stories. Some stories were heartwarming, others were heartbreaking. But on we went. Then today, a day I had much good reason to dread, turned into one of our proudest moments.

Today was Brennan's annual checkup. For many years, doctor appointments were one of our worst days. I would sit with him in the exam room, and have tears well up in my own eyes, as I watched him struggle to allow a doctor he loved exam his ears, while silent tears steamed down his face. Eventually, he progressed to repeating a quiet chant, and less tears, saying quietly "Almost done, almost done, almost done." I knew he was always a people pleaser, and getting upset with someone whom he liked was hard for him. He hated to disappoint his audience. Overtime, he actually looked forward to his appointment and didn't even need to chant!

Back to today. It is hard to believe the milestone he achieved. Completely unexpected, frankly shocking! Let me explain; as many of you know, with Down syndrome, comes annual blood tests, and with childhood, come many immunizations. Thus, with both come, needles!! Well, suffice to say Brennan has an extreme anxiety when it comes to needles. So extreme that we have needed a team of adults to hold him down for any and all injections and blood draws for years! Don't get me wrong, we tried the more dignified, respectful approach of preparing both Brennan a little ahead, and the personnel who would be doing the deed, we tried everything. No matter what, he would act like a line-backer when the tests began, and would fight for his life to avoid needles at all costs! He once required the services of an oral surgeon to sedate him. I forewarned the doctor about Brennan's aversion and intense fear of needles. I suggested that they start the procedure using a sedation mask, and then start the IV, etc. Well, unfortunately, things didn't go as planned and Brennan was chased around the OR like a caged animal. It was one of the most upsetting situations any of us have ever lived through with Brennan. Anyway, back to today.

We went in for his doctor's appointment knowing he would need at least his annual blood draw and possibly another injection - I couldn't recall. For the past week, as was his usual method of processing things, Brennan would constantly confront each of us with incessant queries, "Doctors. No shot. Just looking." We would each in turn respond by repeating his words, thereby committing us no further to the inevitable needle laden experience ahead.

From the moment we entered the office waiting room engaging the unsuspecting receptionists, then on to the exam room nurse, and doctor, Brennan kept up his mantra going ,"No shot. Just looking." Thankfully, the staff remembered from last year how shots and needles were very difficult for Brennan and played along with noncommittal responses. Then, the time came. We could stall no longer. It was decided that we would try to get both the blood work and injection done while we were at the doctor's office. If it didn't workout, we would try to figure something else out, during another visit.

First, Miss Grace, from the office lab, entered the exam room where we were waiting. She sat down at the table adjacent to us and talked with Brennan, while showing him her blood-draw basket full of supplies. I was shocked that Brennan didn't bolt as soon as he saw the basket! Instead, he started carefully pulling random items out of the basket, and asking for their name, which Grace supplied on cue. (Thankfully, the actual Butterfly needle she planned to use resembled a dog leash to him, so he didn't recognize it to be the enemy). He then unexpectedly asked for a pair of purple gloves, like Grace was wearing, and proceeded to clumsily don them. Next he began to play with the bright blue tourniquet, and following some initial resistance, allowed Grace to wrap, and then tighten the thick rubber band around his upper arm. Once that happened, he laid his arm across the table and said, "Shot"? Grace then efficiently, but not too quickly, cleaned the injection site, and inserted the Butterfly needle. Brennan didn't budge. He didn't even wince. He sat and watched the blood fill the first, then second test-tube! When she was done, he even let Grace put on a Band-Aid! A first! I about fell off the chair! And, as soon as we finished with the blood draw, as if synchronized by hidden cameras, in walked Pam, our nurse with the injectable immunization, hidden in her smock pocket. I thought, well, we got the one done, not expecting this dream-like situation to last, then Pam and Grace switched places, and Pam pulled the pre-filled syringe and needle out of her pocket. Shockingly, Brennan asked again, "Shot?" and Pam replied, "Just a little test" and worked with him to allow her to access his upper arm, which soon had also received the now familiar alcohol rub cleaning, and Viola! the injection was over! WOW! What a change!

Brennan, the staff, and our whole family continue to bask in the moment of this incredible event! High Fives all around for the rest of the day! To think, something I had seen Brennan grow increasingly more resistant and intolerant of year after year, actually resolved for him today at 2:08pm, July 29, 2009, at age 16!

It has been one of those special years that we are still pinching ourselves over. As I began my story, with the long mountain drive, leading us to a five-night-sleepover camp, Brennan's first time ever sleeping anywhere but with us, two hours from home, knowing Brennan would be with people he had never met before, who didn't understand his minimal use of words and sensitivities and routines, I had my own anxious thoughts! I worried that he would run away. Would the Life-Care tracking system bracelet help us find him, or would he have a meltdown and be left inconsolable? Any one of a million awful scenarios, but instead, I kept driving and praying. When I said goodbye to him, it was with some tears, but mostly good feelings as I turned the car around and headed toward home. I knew that the staff was well informed, experienced, and showed a great interest in Brennan right away. I now had to let him go, to discover if he was ready to handle this level of independence. It was scary and continued to feel very strange all week. But each day when I called, I could tell things were going well and that he would be fine.

Saturday morning pick-up arrived and I found him laughing and enjoying the company of his camping peers and counselors, as they handed out their camper awards. Brennan was so proud to tell me, "I did it Mom! I did it! Camping!"

So to all the families who have sons or daughters who have both Down syndrome and ASD, you are not alone. There are definitely challenges, but so much joy, too. I hope you will join other families, caretakers, and providers who share this common bond through the support of the DS Autism Connection listserve. There you can share your stories, insights, struggles and joys with others who understand and can relate. To receive an e-mail to join, please send us an e-mail to familyprograms@mhdsa.org

Sincerely,
Margaret Froehlke
Executive Director
Denver Adult Down Syndrome Clinic
Mother of Brennan