Do you have a 'very Special Child'?
Then you might be interested in my TAILS!!
I created TAILS on Suzy's SHIRTS.
It works for us ~ maybe it will work for you, too.
Remember when your kids were babies?
And they all wore ONESIES?
I loved onesies for all 3 of my babies -
the shirts stayed tucked into the pants,
their tummies stayed covered, and warm, and protected,
the onesie kept the shirt from "bunching all up in the back" when the baby was in a stroller or carseat,
there wasnt' a bunch of material gathered around their boobies when they were rolling on the floor,
they just looked neater.
Suzy is pretty much still like a baby - AT AGE 5 - and STiLL NEEDS ONESIES.
So, I created a way to make EVERY SHIRT SHE WEARS A ONESIE by sewing on a TAIL!!
I have done this for 2 years, to every shirt she has, and it's very easy!!!
For every shirt, you need one baby onesie. Cut the bottom 1/3 off the onesie, cut off the sides, and sew it onto the bottom of the shirt.
Click here for DETAILS and PICTURES.
My friend, Lisa, shared a powerful story of a young boy with autism.
He was attending a camp for children with special needs. This boy saw a beautiful butterfly dancing on the church lawn. He was excited and he reached out and captured the butterfly in a clenched fist. His care-giver quickly pulled it free from his grasp; but they watched its fragile wings fall to the sidewalk. The butterfly fluttered for a few moments before dying.
“Grief rose in my throat, but I wasn't sure what hurt me most. Was it the brokenness of a boy who longed to touch something beautiful and carefree, only to crush the life from it? Or was it the thought of how quickly something so lovely can die?”
The next morning at this camp a girl with Down Syndrome was dancing in a circle and singing, “I am a beautiful butterfly! Yes I am.”
I suddenly realized what God was trying to show me.
Yes, Lord, I get it! These children are like that butterfly. They are full of beauty! Full of grace and wonder, and even so, they are broken. But oh, how lovely and special they are to You, Lord. How precious to behold one single moment of the beauty that lives within them!
Dear Lord, thank You for choosing me to love a child with special needs. Help me to see the beauty in Suzy through Your eyes, as a marvelous creation, beautiful and full of potential. You've promised a purpose and a plan for her. Your Word tells me that You use broken individuals to do amazing things for Your glory. Help me then, Lord, to be all she needs me to be, as I rely on Your strength to carry us through difficult days. Amen.
(Story paraphrased from Proverbs 31 Ministries)
Today we are heading to Children's Hospital to have surgery on Suzy's eyes. It should be a rather simple procedure.
We are praying that she benefits from this.
The doctor is going to 'release the elevator' muscles in her eyes.
They are too 'tight' (just like all the muscles in her body) and they pull Suzy's eyes upwards too much.
She has to work hard to look downward.
Please pray that this works well for her.
(It's a real b*t#h when you have to work hard to see.)
My heart is full ~
When you have a child "like Suzy" (who is so very limited in things that she can 'do', and whose DISabilities far outway her ABilities), you naturally think about how her life will be effected..............
And the picture you see is of a child who is lonely, forgotten, and sort of lost in society.
This reality is probably why I LOVE Suzy's preschool program SO MUCH. If you follow my blog you are WELL AWARE that I am THE BIGGEST FAN of Room 36 Special Ed Preschool Class at Princess Anne Elementary School !!!!!
Her 'special' class is housed in a 'regular' elementary school, and I will remind you that there are 7 children with varying disabilities and 2 very normal children who are in the class to serve as rolemodels. There are also 3 MIGHTY AMAZING teachers ~Miss Beth, Miss Debbie and Miss Kim
The joy begins in the fact that HERE, in this magical setting, my daughter is NOT viewed as "different", or "handicapped", or "less important", or as an "after-thought".
She rolls into the classroom every morning and she just FITS IN.
Yesterday was no exception~
Upon wheeling into the classroom, Paige (an adorable, loveable, and very normal child) runs up to us and says, "Suzy, can you come to my birthday party?"
Paige then quickly looks up at me and asks,"Miss Whitney, can Suzy PLEASE PLEASE come to my birthday party. My mom said that she can come and that you might bring her. Please?"
It's as if the Heavens opened up and God was shining his light down........
Really? This very normal 5 years old really and honestly wants MY child to come to her very normal birthday party? My child, who has never spoken a word to Paige, or actually 'played' with her.
But yes, Paige honestly thinks that Suzy is her FRIEND.
And wants her to do a very normal thing - come to her birthday party.
Later, I saw Paige's mom. And yes, it is true, Paige REALLY wants Suzy to come. Suzy was the first name on her birthday invitation list.
Again ~ cue up the Angels ~ because Heaven is at work here!
So, Suzy will be helping me shop for a present and putting on her party dress ~ because this little girl who I was worried would be "forgotten" and "shunned from the world" has a party to go to !!!!!!!!
The above picture is of Suzy and Paige
2012 has been a great year so far!
All 3 girls are all doing well.
Last week I met with Suzy's school "team" to edit her IEP and get ready for next year.
Her teacher (miss Beth), her school PT, ST, and OT and the principal were all there.
And I want to shout it out from the rooftops - "I AM SO HAPPY!!"
First off - Her TEAM is amazing.
They are all dedicated and so extremely loving. They seem to really enjoy working with Suzy and they are all committed to helping her be the best that she can be.
Her new goals were discussed and I like all of them.
AND - the best news is that the principal said she will allow Suzy to participate in a 'situation' next year that is not the norm; but that we all feel will be the most beneficial for Suzy.
I will wait to disclose that 'situation' once it has been signed off on by the Special Ed Coordinator; but I am so so so so so so so excited.
Suzy also had a recent eye exam, and she will be having corrective surgery in the next few weeks. I am also excited about that. The doctor is going to pull in the left eye, which wonders outward, AND he is going to release the 'elevator muscles' in both eyes to keep them from being pulled UPward so easily. She fights hard to pull her eye gaze down........
Now - -
if I could just get her to sleep thru the night my life would be complete
I am becoming a tired, old woman...............
I posted some random pictures from the month under PHOTOS-feb. 2012.
The 'peanut butter pictures' crack me up.
Suzy, our sweet little princess, turns 5 today!!
Wow - I CAN'T believe she is 5.
I know every parent says this, but it is amazing how quickly the years go by.
One minute we're pregnant, and the next minute the children are catching the school bus.
I admit - I can't help but think back to when Gracie and Maggie were 5......
I remember they were doing gymnastics, taking piano lessons, reading books, decorating cookies, and swinging on swings.
Even though Suzy is now 5 she is still basically a helpless baby.
She is still unable to scratch an itch,
or say, "mama."
or pick her nose,
or wave "bye bye"
or even hold her own bottle ( and YES, she DOES still drink from a bottle.)
This is certainly not how we expected Suzy to "be" when she was born 5 years ago.
We expected that she would grow up like any other child.
We expected that she would be able to take care of herself one day.
But many times our "expectations" in life are very different from how life truly unfolds.
And sometimes those "unplanned events" turn out to be exactly what was meant to be.......
4 years ago Suzy got viral encephalitis....
That was the hand that our family was dealt.
Today, on Suzy's 5th birthday, I realize just how grateful we are. In spite of all the extra work and heartache that Suzy's illness causes, we are still grateful.
We are grateful that God has entrusted US to be her parents.
He let US have her and LOVE her for 5 awesome years!
On her birthday I want to honor all that she is:
Suzy is adorable,
full of life,
a good sport,
and full of joy.
She makes our lives a better and richer place.
Happy Birthday, Suzy.