THINGS TO THINK ABOUT

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.