Two Very Special Twins

When we found out that I was pregnant with twins, we prepared by telling our son Sam about the joys and responsibilities that two new babies would bring.  We put the twins on waiting lists at both Fraser School and the center that Sam was attending at the time.  We were familiar with Fraser — we had friends and neighbors with children there and it was closer to home than the other center. 

One baby has Down syndrome

We were so excited the morning of my scheduled C-section.  We dropped Sam off and headed to the hospital.  Our bag was packed with matching outfits for the twins and a list of phone numbers of people to call with the news of their arrival.  Everything happened so quickly.  Ethan was delivered first and Oliver followed one minute later.  All seemed well in the delivery room.  It wasn’t until we were cuddling in the recovery room, trying to figure out who they looked like, that we noticed little details about Ethan that seemed different from our other boys.  His ears were folded over (perhaps from being squashed in the womb by his bigger, more active twin, we thought) and he had a single “palmar crease” on each hand.  We realized, before the hospital staff noticed, that Ethan had Down syndrome.  Our joy was overshadowed by grief, sorrow, and worry.  Grief over the loss of our idea that the twins would grow and develop at the same rate, sorrow about our baby facing so many difficulties in life, and worry about all of the associated health issues.  The only calls we made that day were to immediate family.  It was too difficult to explain our mix of emotions — being overjoyed and overwhelmed at the same time.

A lifetime of medical problems?

When the doctor confirmed our suspicions, he informed us of all of the medical problems that people with Down syndrome are prone to — like leukemia, heart defects, Alzheimer’s and a shorter life span.  It was devastating.  No one mentioned the many resources that were available.  Having previously worked at Fraser Child & Family Center, I knew about the importance of early intervention.  The day after we brought the twins home I called Minneapolis Public Schools, the Down Syndrome Association of Minnesota, Hennepin County Social Services, PACER, Arc, and Fraser School.  I also called to take the twins off the waiting list at the other center.  I wanted them to be together.  I knew that Fraser School had on-site therapy services and that Ethan would not be the only child with special needs.  Fraser’s intake coordinators were wonderful.  They told me about center-based respite services and also put me in touch with Fraser’s rehabilitation services coordinator.  Most importantly, they were compassionate and respected my wish to place Ethan and Oliver in the same infant room.

A place for all my boys

The twins started at Fraser when they were 6 months old.  Ethan was able to start occupational and physical therapies at that time.  Soon afterwards, we moved Sam from the other center to Fraser, so that he could be in an environment that is inclusive of children of all abilities.  This proved to be a fateful decision.  At his 5-year check-up and kindergarten screening, we learned that he wasn’t hearing well out of his left ear.  I asked Sam’s teacher to watch for any hearing difficulties and voiced my concern about hearing-related speech delays.  Surgery later revealed that he had a cholesteatoma (non-cancerous tumor) that had destroyed most of the hearing mechanism in that ear.  Sam was evaluated and started in Fraser’s therapy services within a week of his surgery.
 
Ethan and Oliver are now 2 1/2 and Sam is 5 1/2.  We are so happy that they are all at Fraser.  The staff challenge each of our boys to their fullest potential.  They set high expectations and help them to achieve their goals.  Ethan tends to be lazy, if you let him.  The staff recognizes this and encourages him to be independent.  He receives speech and music therapies as well as occupational and physical therapies.  He is learning to communicate with some signs, a few words, a lot more eye contact and fewer meltdowns.

Fraser teaches compassion

Our children have learned compassion at Fraser.  They are taught to accept people of all abilities.  Oliver sees children, other than Ethan, who face challenges with mobility.  A teaching assistant (Mr. Brian) in Sam’s room has Down syndrome and he tells the kids stories about the band that he is in with his brother.  Sam hopes that someday he and his brothers will share an apartment, be in a band and have their own television show.  It is difficult to articulate how it feels to walk into the gym and see one of the other children pulling Ethan around in a wagon; to see Oliver, without being asked, bring a toy to a friend who is not mobile; or to hear Sam talk about playing duck, duck grey duck with Mr. Brian.

We consider ourselves blessed.  We have three bright, beautiful boys and the love and support of family and friends.  We have met wonderful people that we would probably not know if Ethan did not have Down syndrome.  Sam and Oliver are very talkative and engaging children.  Ethan is a boy with beautiful eyes like his brothers’, a great belly laugh, a strong will and a short temper.  He also happens to have Down syndrome.

As parents of a child with special needs, we have often been made to feel like we either aren’t doing enough, or conversely are expecting too much for our child.  But, the Fraser staff has always treated our family with respect.  This is so refreshing.  Our hope is that all of our children will have a chance to pursue their dreams.  We know that with supportive organizations like Fraser, the opportunities for people of all abilities are many and varied, and it is possible for all three of our sons to lead rich, rewarding lives.