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





Tuesday, October 10, 2017

OCTOBER IS DOWN SYNDROME AWARENESS MONTH

October is Down Syndrome Awareness Month, a chance to spread awareness. During the month of October, we celebrate people with Down syndrome and make people aware of our abilities and accomplishments. It's not about celebrating disabilities, it's about celebrating abilities.

To help celebrate the boys and promote awareness with their classmates, here is the treat the boys are sending home this week (sorry it's turned the wrong way):




We also included this letter for parents:

Dear Parents, 

As we settle into this school year, we would like to take the opportunity to give you a special introduction to our sons, Ben and Jonah, who are in Mrs. Egan's 1st grade class.

The boys are very independent, active little boys. They enjoy a wide variety of activities … playing with toys (blocks, Rescue Heroes, cars, trucks etc), playing outside, swimming, using the IPAD, and watching their favorite TV shows.  They also just finished up playing baseball in the Miracle League up in Manitowoc which is a baseball league for kids with special needs.  

Besides being very “typical” 1st graders, the boys also happen to have Down syndrome. Your child might come home wanting to know more about them  and why they are a little different. Based on our past experiences, most questions from children this age are related to the boys' speech and their  inability to communicate effectively. 

"Children with DS have anatomical and physiological differences in the mouth and throat region that affect feeding, swallowing, and oral motor skills. They also often have hypotonia, or poor muscle tone in the mouth area."  Because of these things, speech is often delayed for children with Down syndrome and sometimes difficult to understand. 

One thing to remember though, even though Ben and Jonah may have delays in speech, they understand what is being said to them.  So please encourage your child to talk to the boys- they love being part of the conversation! 

Ben and Jonah work very hard in speech therapy several hours per week to conquer their speech delays. Both have a long way to go, but they have come so far and we are so proud of them!  Sometimes to help the boys communicate, they will use sign language.

Something extra unique about Ben is we adopted him from the country of Lithuania last year.  So he has only been exposed to English for one year which makes his speech successes this past year even more impressive we think!

So if your child is curious, they boys are not biological twins even though they are both in 1st grade.  Ben is actually 3 months older than Jonah.

Both boys are primarily visual learners and will imitate what they sees others doing.  We encourage you to share what you feel is appropriate about the boys with your children so that they can understand how they are different, but more importantly how they are the same as they are.  Encourage them to support them without babying them, and to talk to them like they would anyone else, perhaps giving them a bit more time to respond and a little more explanation if they  don't understand right away.  They can also remind them to stay with them if they see her heading away from the group.   

Research has shown that children with Down syndrome benefit from placement in a regular education class, receiving their education alongside typically developing peers of their own age. Regular opportunities to learn and play alongside typically developing peers gives children with Down syndrome the role models they need to acquire new skills, encourage age-appropriate behavior, and develop independence and friendships. 



Inclusive education benefits not only our children, but studies have shown that inclusion has a great benefit to the other children in the class. Inclusion facilitates greater understanding, tolerance, as well as learning to be supportive of one another. Children also learn to value diversity and to appreciate that everyone has something beneficial to bring to the life of the school and the community. 

We are grateful for your support and for the support that Ben and Jonah will have in Mrs. Egan's  class. Ben and Jonah will have a team of people that will help support their learning needs and facilitate the inclusion support. We are also grateful for the opportunity to be in a learning community together and look forward to meeting you (if we haven’t already) and working together for a great school year. 

If you have any questions about Ben and Jonah or Down syndrome, please feel free to contact us at mlavey@wi.rr.com or 920-668-8302. We are very open about our experience and in talking about what it means to have Down syndrome … no question is a silly question and we would rather share with you, than have you wonder. :)

Sincerely, 
Andrew and Mary Lavey 

We have put together a Q&A to help you field some questions that your child might have, or to help you in talking with your child about Ben and Jonah. We hope this is helpful to you. :)

What is Down syndrome?
Children born with Down syndrome have one extra chromosome in some or all of their cells. The chromosomes contain directions that tell your body how to grow. When a child has an extra chromosome it mixes up her body’s directions a little. That is why they may look a little different and have to try harder to learn. 

Will Ben and Jonah always have Down syndrome?
Yes, it is something they will never outgrow. 

Will Ben and Jonah be able to do things like me?
Yes, they will be able to do everything like you do, it may just take them a little longer to learn than most kids. They will learn to talk more clearly too, it’s just that learning to talk is often very hard, but just like anything, with a lot of hard work and practice they will get better over time. They boys also can do things you might not be able to do yet, like use sign language. 

Are Ben and Jonah sad that she has Down syndrome?
No, right now Ben and Jonah are happy to be growing healthy little boys. They love to learn new things, just like you and me. You’re fortunate to be growing up in a world where people understand that everyone is unique, but that we all enjoy and want the same things, like having loving families and friends, going to school, and being accepted for who we are. 

A VERY SPECIAL WEEKEND

As I mentioned before, this past weekend was Homecoming for our school.  

We had the excitement of watching our son Stephen be named king for homecoming.

Someone once said to me that it's more important how your kids act OUTSIDE the home than INSIDE the home.  While I don't completely agree with that (can't us parents ever catch a break...:), it was very nice to hear what a nice kid Stephen is from so many people.    

We are very proud that Stephen is a polite and courteous young man who treats others with kindness and respect.  This more than anything will take him far in life.

Happy Homecoming 2017!







video


Sunday, October 8, 2017

BUSY AT SCHOOL and OTHER NEWS: GRAVE'S DISEASE

The boys have been busy at school in their new special education room.  Here are some photos from their Create Group Time.  They are making leaf wreaths.




OTHER NEWS:
As part of Jonah's 7 year check up, his pediatrician did a thyroid screening because thyroid issues are very common with Down syndrome.  


Most people with Down syndrome who have a thyroid issue deal with hypOthyroid or low thyroid.  It is much more rare to deal with hypErthyroidism or high thyroid.  This is true for the general population as well as people with DS.

Jonah's thyroid screening came back high.  We were sent for additional bloodwork at the Children's Hospital, and the diagnosis at this point is Jonah is presenting with a combination of Grave's Disease and Hashimoto's Disease- both are autoimmune conditions that cause hypErthyroidism. 

We were hoping it was just an infection that was causing a temporary jump in Jonah's thyroid.  Unfortunately this is not the case.

HypErthyroidism is a treatable condition although it can be rather tricky to find the right medicine.  The medicines available can be hard on a person with possible side effects being rash, low white blood count, headaches, muscle aches, and nausea.  Of course, these side effects are not highly likely to happen, but as a mom I am worried about giving my little guy such a powerful medicine.  

However, to not treat Jonah's hypErthyroidism would put him at risk for heart issues, growth and bone development issues, and overall feeling in poor health.  

So we will be starting the methilazone tomorrow and getting monthly blood checks to see how the med is working on his thyroid (goal is to shut the thyroid down).

Grave's and Hashimoto's can sometimes go into remission after a period of treatment.  Sometimes that remission is permanent and sometimes the conditions come back again after a period of no treatment.  

So everything with this is a wait and see.  Never a dull moment with Jonah....










SOMEONE GREW UP WHEN I WASN'T LOOKING

You spend every day with her.

In the beginning, it was almost every moment.  

And yet, somehow you miss it.  

The little girl grows up and becomes a young lady.  

How did it I not see it happening?  

How did it go so fast?

Our Lydia is a freshman!  She went to her first Homecoming Dance this weekend.  

We are so proud of the beautiful young woman she is becoming.  We are so excited for what her future holds for her!

We love you Lydia Grace!





This August Lydia started volunteering at the horse therapy ranch in our town.  We are so happy she has found this place to use her talent and love for horses combined with her knowledge and experience with kiddos with special needs.  It's a great fit, and Lydia is doing an amazing job learning how to help during the lessons.  

Here is the link to the ranch in our town that Lydia volunteers at:
heavensgaitranch.org

Here is the link to an article discussing the benefits of horse therapy for people with special needs.  
equestrian therapy special-needs