We were recently asked to give our thoughts on things a family should think
about when deciding whether to pursue a special needs adoption. Here is what
we shared:
Let me tell you about how we came to adopting 2 boys with Down syndrome.
We use to be interim care foster parents for Bethany. One of our placements was
a newborn baby girl who had Down syndrome. We had little Baby M at our house
for 6 weeks. What a special time that was. All of our 15 placements have been
precious experiences, but there was something about that baby girl that just
stole my heart. When she left to be with her adoptive family, I missed her
unlike any other foster baby we had. Usually it takes me about a week to get
over a foster baby leaving. It took me weeks to stop crying about Baby M. In
hindsight, we believe that was God beginning to plant the seed in our hearts to
adopt a special needs child. The other thing Baby M made us aware of is that
there are not always adoptive families available to adopt a baby with Down
syndrome. Baby M's adoptive family came from Iowa because at the time, there
were no WI Bethany families available. This made us start to think that perhaps
families were needed who were open to special needs adoption.
We have 3 biological children. We never had any intent to adopt. So it was a
great surprise that in the months after Baby M left our home, we started to feel
called to adopt a baby with Down syndrome- totally a God thing!
I had an aunt with Down syndrome. She would often come visit us on wkends when
I was growing up. I am very familiar and comfortable with Down syndrome because
it has always been part of my family. My husband had a cousin with Down
syndrome so he is also very comfortable and familiar. This familiarity was a
determining factor in us going forward with adopting our son Jonah.
Long story short, we adopted Jonah in Sept 2010. He was placed in our home at 3
wks old. He was born 20 minutes from home. I had the privilege
of being in the delivery room!
In July 2016, we adopted Ben who also has Down syndrome. Ben is from Lithuania.
Ben was 6 years old when we brought him home. He spent his 1st 6 years of life
in an orphanage because his birth parents did not want him because he had Down
syndrome. If we hadn't adopted him when we did, he would have been transferred
to an adult mental institution where he would have spent the rest of his life.
We adopted Ben because we felt the Lord was asking us to help keep him from life
in an institution. We also felt the Lord was providing our Jonah with a forever
friend and partner in crime for the rest of their lives. The boys are only 3
mths apart!
That is our story in a nutshell. We never expected to adopt one child much less
2 children with Down syndrome. God truly has a sense of adventure (and humor,
haha).
Now on to your questions:
We knew before Jonah was born that he had a kidney issue that is common to Down
syndrome. We knew it would need surgical correction probably sometime within
his first year. We found out at birth that Jonah had a small hole in his heart,
but it was the one that is very common and it closed on its own in his first
6mths. Anything you can find out about this little one that has been noticed in
ultrasounds would be helpful for you to prepare and know what sort of medical
care might be needed after the baby is born. Heart issues are very common with
Down syndrome kiddos. In fact, our Ben had to have open heart surgery at 18mths
old- obviously we didn't know him at this time. Let me just say that being so
close to Children's Hospital of WI is an amazing blessing. Our Jonah has
respitory, ear, and thyroid issues so we doctor with Children's quite often.
They offer exceptional and expert care. Being able to access them for care has
made Jonah's health issues less scary and very manageable. There is also a Down
Syndrome Clinic at CHW which offers many resources including excellent seminars
1-2x year that I have attended often.
Other resources you might want to check out is the Birth to 3 program that your
county offers. This program will provide speech, occupational and physical
therapy for your child up to age 3. Jonah started his therapies at 2 mths old.
And then I would investigate what the special education program is like at your
school. Our school has been phenomenal. We are so happy with the support and
care the teachers give our boys. Jonah started an early education program at
age 3 already. Both boys are currently in 1st grade although it is adapted for
their level and they receive much support from the special education teachers.
There are 2 things I wish I had been more prepared for in regards to adopting a
child with Down syndrome:
1. Our pediatrician told us that we could expect everything to take double for a
child with Down syndrome. This is not set in stone, obviously, because there is
a range of high functioning to low functioning for Down syndrome. But its a
good rule of thumb to consider. This means if most babies walk at 1 year old, a
baby with Down syndrome will walk at 2 yrs. That's when Jonah walked. However,
Jonah is still non verbal and still not toilet trained so he is bit behind the
"double" rule of thumb. Our Ben, however, is very verbal and has been trained
since he was 3. So you never know.
However, what we are experiencing with both boys, is that at age 7, it is more
like caring for a child half that age in terms of the amount of trouble they get
into and the amount of supervision they need. Our boys do not have much safety
awareness. No book about Down syndrome will tell you that impulsiveness and
lack of self control is officially an aspect of Down syndrome, but I believe it
is an issue for lots of kiddos with DS. Jonah and Ben live very much in the
moment. If they get an idea in their head of something they want to do, they
just do it. They don't assess the big picture or filter if the thing they want
to do is a good idea. Usually by age 7, most kids are a bit more trustworthy
that you don't have to constantly be near them. I didn't anticipate this so
sometimes being on constant alert gets a bit weary and overwhelming. This might
also be because we are older parents at age 47 so maybe we are just wearing out
:)
The other thing I did not know about Down syndrome is that often when they get
sick, it can often go from bad to worse very quickly. This is especially true
in the first 2 years of life. Jonah was hospitalized for pneumonia when he was
5mths old. He was very sick. It happened very quickly and was not something I
was expecting since it started out with just the sniffles. He then had 2 more
bouts of pneumonia during his 1st 2 years. After Jonah turned 2, his health got
much better. But even now, when Jonah gets sick, we always feel like we have to
watch him extra careful to make sure things don't get more serious. Ben, on the
other hand, is built like a Mack truck! Nothing sets him back too much, so
again, this is not true for every child with DS.
Our 3 bio kids were in 8th grade, 6th grade, and 2nd grade when we adopted
Jonah. They were familiar with Down syndrome because of Baby M. Our youngest
was very jealous of Jonah when he entered our family. Those 2 are still a
relationship in progress. Of our 3, she probably resents the special needs
thing the most. Oddly enough though, she was the one most excited when we
adopted Ben. I think the fact he had been in a orphanage for his whole life
really tugged at her heart.
Parenting children with DS is a wonderful beautiful experience which does take a
lot of work and patience. I wouldn't trade it for the world, but I also know it
is very important that I make sure I get some breaks from it so that I don't
become overwhelmed. You have to remember to take care of yourself too.
There is something about our boys that just draw people in. They are super
sweet and loving, Jonah especially. Ben, unfortunately, is still working thru
some "orphanage issues" that are no fault of his own. But he is coming out his
shell and showing us he is a funny, talented, cute little guy. As I mentioned
above, the boys live in the moment which at times can be difficult, but it is
also one the best life lessons they have taught me. Our boys don't care what
people think of them. They don't care if nobody else is dancing or singing to
the song- if they want to sing and dance in the middle of the crowd, they do it.
And they do it with great joy and happiness. They are uninhibited in showing
their feelings. I think my mom said it best when she told me that she believes
in heaven, we will all have Down syndrome because they are so pure in heart with
how they deal with life. Our boys hug big, kiss big, smile big. I love them as
if I had carried for them 9mths and gave birth to them. They have stolen my
heart. It can be lots of work, but it is worth it.
