Friday, February 9, 2018

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.  

Friday, December 29, 2017

TIS THE SEASON TO BE JOLLY

The Christmas season has been busy but lots of fun!  


My mom preparing her famous cranberries.
My dad also had heart valve replacement surgery in early December, but I didn't think he would appreciate the hospital photo we took... He is doing great!  

Jonah had a sleep study because of his snoring issues.  Diagnosed with mild obstructive sleep apnea, need to see ENT to discuss removing tonsils/adenoids.  

Picking out the Christmas tree



School Christmas program- the boys did great!  They also were in a program at church.  
 


Annual Lavey women Christmas cookie baking

Our 3 oldest got to go with cousins.

Gingerbread house with boys and Lydia

Breakfast with Santa




Visiting another Santa

Lydia sings a solo on Christmas Eve- beautiful!

The calm before the storm on Christmas morning :)

Our version of matching family pajamas: "I Love Someone with Down Syndrome"

Merry Christmas from our house to yours!

Tuesday, November 28, 2017

OUR CHRISTMAS CARD 2017




MERRY CHRISTMAS 2017 and HAPPY NEW YEAR!
After bringing Ben home in July 2016, the past year and a half has been a period of much adjustment but also much happiness.  Ben is a wonderful little boy who fits perfectly in our family.  We are so thankful the Lord gave us the opportunity and privilege to be his family.

Photo#1: Jonah celebrated his 7th birthday in September.  He is in 1st grade.  He is  learning his letter sounds, numbers 1-20, adding, and reading sight words.  He continues to have speech, physical, and occupational therapy each week.  He is still a pretty quiet little fellow, but he is working very hard on becoming more verbal.
Photo#2: Stephen will graduate from high school in June.  He has not yet decided on a college, but he is hoping to run at college and is planning on majoring in biology or math.
Photo#3: Lydia graduated from 8th grade in the spring.  She is now a freshman in high school.  She is in the school play in early December.  Lydia also started volunteering at the horse therapy ranch in Cedar Grove which she really is enjoying!
Photo#4: Our family traveled to Niagara Falls and the Adirondack Mountains in June 2017.  It was absolutely beautiful and lots of fun!
Photo#5: Ben celebrated his 7th birthday in June.  Ben is also in 1st grade.  His English is amazing!  He is starting to read sight words and speak in 3-4 word sentences.
Photo#6: Abigail is in her 2nd year at University of Minnesota. and loves it!  She hopes to enter the Biomedical Engineering program in January 2018.  When she is home, she is often surrounded by these 2 little boys who really miss her.
Photo#7: Family picture at our cabin in upstate New York.  

We want to wish you a blessed Christmas.  We pray the wonder and joy of Jesus' birth would fill your hearts each and every day. 

Philippians 2:8-10 And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross. Therefore God has highly exalted him and bestowed on him the name that is above every name, so that at the name of Jesus every knee should bow, in heaven and on earth and under the earth 

Thursday, November 2, 2017

WHAT HAVE WE BEEN UP TO?

Cross country: the boys team and one member from the girls team are state bound!  Congratulations!

Unfortunately state cross country didn't go as planned.  Stephen was hoping to finish in the top ten runners in Division 2.  However, he suffered an asthma attack during the race and ended up 91st.  Very sad for him after all his hard work.  

One of the hardest parts of being a parent is watching your child face hurt and disappointment.  All important life lessons, but still hard to watch.  

We are very proud of all his hard work and success over the past 4 years of high school cross country.  We are also very proud of how he is bouncing back from this setback and having a positive attitude.

\
Halloween: we had 2 Minions in the house!



Thursday, October 19, 2017

MORE IMPORTANT THAN AN IEP?

For parents of a child with special needs, the IEP or Individualized Education Plan, is a very important document.  This document specifies how your child will be taught, what your child will be taught, and how that will be measured and tracked.  An IEP follows your child through out his entire school career.  Many meetings and discussions happen because of an IEP- it needs to be updated yearly and assessed and reviewed constantly.  

I agree with the importance of an IEP.  I want our boys to get the best education possible for them.  Their IEPS help all of us- teachers, therapists, administrators, and parents- be on the same page in helping our boys reach their highest potential.  


However, last year, I met with a group of moms who had children with special needs.  We discussed our children's SPIRITUAL education rather than ACADEMIC education.  We realized that we put so much time and effort into teaching our children about letters and numbers, but we don't always put the same seriousness towards how our children will learn spiritually.  

As Christian parents and as churches, we have the responsibility and calling to teach our children about the Lord.  When a child has a special need, our conventional ways of doing Sunday school, Bible class, and VBS may not work for that child.  What often happens is the child and parent get frustrated because the activities don't work for them.  Sometimes this means families with children with special needs stop attending.  Sometimes the parents of the child get burnt out because they are constantly having to be present to help interpret and adapt activities for their child, never getting a break for themselves to be spiritually fed at church.  

This is why the idea of one church down in Indiana is so fascinating to me:  they offer an Individualized Worship Plan for kids with special needs.  This is a chance for parents and teachers at the church to come together and think of the best way to communicate God's love to their child.  This means the church will have extra support for that child so parents don't have to always be the one-on-one.  

Here is the link for that special needs ministry in Dyer, IN:
Special Needs Ministry- Faith Church in Dyer, IN

The photos below are from our kickoff event for IFIT- a special needs ministry that churches in our area have organized.  Its an amazing program!   

Here is our website:

IFIT: Faith in Training

The reason IFIT came about is because a group of moms with children with special needs, from churches in our area, started talking about how church works for our kids.  Church activities are often too difficult, have too many distractions and transitions, and have no one-on-one support for kids.  We knew it was too much to expect each of our churches to the right setting for our 1 child so we thought about coming together as churches offering a special needs ministry for any families in the area.

WHY?
Statistics show that families with children with special needs often don't participate in church.  It's either hard for their children to participate in the activity because it's designed for typical children.  Or families may not feel welcomed because their child is "different". 

However these families need our churches' love and support, and children with special needs deserve to learn about God's love for them just like any other child.

HOW: IFIT meets children where they are at.  Bible stories are told using many different approaches so that many different learning styles can be reached.  

One-on-one buddies are available so each child gets personalized attention and assistance.  Plus this gives parents a break- often parents of children with special needs feel like they always have to be involved because no one else is there for their child.

Also a trained medical professional is present.


STATISTICS REGARDING THIS ISSUE:
                   
Almost 1/3 (32.3%) of special needs families said they had left at least one church because their child was not included or welcomed.
                   Nearly 50% (46.6%) of special needs parents said they refrained from participating in a religious activity because their child was not included or welcomed.
             More than half of special needs parents reported that they had kept their child from participating in a religious activity because support was not provided (55.8%) or been expected to stay with your child at a religious activity so your child could participate (55.3%).
Above statistics found at:



Tuesday, October 17, 2017

THE BLESSING OF FUN!

Fall-o-Ween Party by 
Grandma and Grandpa with the cousins- FUN!


Field trip for 1st Grade: 
"fishing" in the pond, canoe rides-FUN!


Driving the "Magic School Bus" 
at Bookworm Gardens- FUN!
This is an amazing place to visit in Sheboygan:



Big brother Stephen 
wins conference for cross country- FUN!

Boys at school- FUN!

Thank you Lord for so many fun days!



Wednesday, October 11, 2017

SOME GREAT RESOURCES

Here are some great resources if you are looking to reinforce at home what your kiddos are doing in school.  Our boys are in 1st grade, but I am doing PreK or Kindergarten level for these various math and reading programs.

Starfall

This website has amazing online activities and games.  I do some activities with the boys, and sometimes I let them navigate on their own using their ipod touches- yes, we still have ipod touches, and they still work!  One year home membership costs $35 which is soooo worth it!  This is a great website!

ABCya
This website has fun number and letter games.  It offers a paid membership, but I don't remember paying anything, and it seems like I can access most of the games.

IXL
This website is more like a testing or evaluation to see where you child is academically.  There is a paid membership, but I didn't join.  Instead, each day I get 8-10 free questions so that is how I use this website.  We are currently working thru the PreK Language Arts lessons, just doing 8-10 questions in a lesson each day.

Free Reading Program
I can't believe I just stumbled upon this website.  It's FREE!  We are doing the kindergarten level reading program.  There is also a phonics program we will be working through next.

Splash Math
I splurged on this online math website.  It cost $89 for 1 yr membership- I used some of Jonah's birthday money towards it- more valuable than another toy I thought :)  I was having a hard time finding a good FREE math website that had what I needed for the boys.  This website is awesome and so far worth the money.

Fun with Spot
This website has some cute FREE educational games and activities.


Here are some favorite YouTube songs we use to review ABC phonics, numbers 1-20, colors, and shapes:

Alphabet Phonics Song by Have Fun Teaching
Alphabet Sounds Speech Therapy
Phonics Song
Fundations ABCs-this is the program our school uses
Fun Numbers Chant 1-10
Fun Numbers Chants 10-20
Let's Count to 20
Counting 1-20
Learn Colors
Sing Along Shapes Song

Finally here are some great handwriting worksheet PDFs:

Upper Case Letter Tracing
Lower Case Letter Tracing
Number Tracing
Make Your Own Worksheet- used for boys' names


We are trying to work through some of these above activities every day.  We don't want to overwork or over stress the boys so we try to make it just 15 minutes a day with each boy.  Of course, this is our goal not always our reality- some days, life happens...

The reason we are doing this above and beyond what they are doing in school is because research shows that kids "with Down syndrome generally take longer to learn and to consolidate new skills. They may need greater levels of repetition and opportunities to rehearse and practice new skills and learning."  

This quote came from this very interesting article about how children with Down syndrome learn best:

Typical Learning Profile of a Child with Down Syndrome