A Good Read

Someone posted this poem on a special needs forum I frequent about a year ago and I think it's perfect! I thought I'd post it here for everyone to read.


WELCOME TO HOLLAND
by Emily Perl Kingsley
©©1987 by Emily Perl Kingsley.
All rights reserved


I am often asked to describe
the experience of raising a child with a disability
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel.

It's like this......
When you're going to have a baby,
it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.
You pack your bags and off you go.
Several hours later, the plane lands.
The stewardess comes in and says,
"Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland??
I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.
They've landed in Holland and there you must stay.

The important thing is that they haven't taken you
to a horrible, disgusting, filthy place,
full ofpestilence, famine and disease.
It's just a different place.

So you must go out and buy new guide books.
And you must learn a whole new language.
And you will meet a whole new group of people
you would never have met.

It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while
and you catch your breath, you look around....
and you begin to notice that Holland has windmills....
and Holland has tulips.
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...
and they're all bragging about
what a wonderful time they had there.
And for the rest of your life, you will say
"Yes, that's where I was supposed to go.
That's what I had planned."
And the pain of that will never, ever, ever, ever go away...
because the loss of that dream is a very very significant loss.

But... if you spend your life
mourning the fact that you didn't get to Italy,
you may never be free to
enjoy the very special, the very lovely things ...
about Holland.

******

Progress on the therapy room

Remember to check here for information and updates about the therapy room project.

I thought I'd post a little update on this blog as well. The profits from my June orders were $250.00. YAY! Thanks to everyone who ordered and supported this fundraiser. Remember, if you missed your chance this month, another order has already started and will run until July 18.

The initial money raised was to pay for the basic prep of the room. The electrical run and lights put in, a window a/c unit and flooring. The flooring was donated for the building and also the installation is being done free of charge! A huge thank you to Dr. and Mrs. Carroll Hughes for the carpet donation and to Mr. Don Ray of The Remnant and Rug Shop in Thomson for volunteering his time to install the carpet. Your generosity is greatly appreciated! The electrical part of the prep is being started on tomorrow and will be completed by Friday.

My next step is insulation and drywall for the building. I have contacted someone in regards to a possible donation of insulation and I am awaiting his response. If a donation is not possible, we're looking at about another $250.00 for the walls.

I am so excited that this fundraiser got off to a fantastic start. This is going to be such a great thing for LJ. I will post pictures at the end of the week showing the progress on the building.

Provided byFundraising Ideas Center

More Writing

When I pulled out this new easel to show LJ, he decided he wanted to try out the chalkboard. (He's loving chalkboards these days) First, I wrote his name and he copied it. Then he said he wanted to write TRAIN. So I called out the letters and he wrote them. Notice how he formed his R? Silly, but he's got the idea down. Notice his backwards N at the end....it's kind of hard to see. N and M are hard for him because once he starts, he just wants to keep drawing the peaks. But on this N he did just the right amount...he just did it backwards.

I'm just so proud of how much he's gaining with his handwriting skills.



He also wanted to write MOM. A few days ago when we were doing chalkboards, I asked him to write MOM. His response was "M--O--M?" I was surprised that he knew how to spell MOM. Another proud mommy moment. He didn't do so well forming his M but did much better tonight. I wish I had snapped a picture of that as well.

Stocking up for the room

I'm constantly on the look out for items to use with therapy. Most common toys work great for fine motor skills like blocks and TINKERTOYS! I found this knock off version on the clearance aisle at KMart. Regular price $20.00 and on clearance for $15.00. Not a great clearance if you ask me, but it was a reasonable price (all wood pieces) and these will be great for LJ. They'll be fun because they're building and he loves that, but they'll also be working to help improve his fine motor skills.



Then on the clearance aisle I came across this desktop easel. My sister-in-law (Chrissy) had said that an easel is a good thing to use as it makes the writing surface into a more natural position. This deal was more of a sale than clearance knocking the price from $19.99 to $18.00. But again, for an all wood toy and with a great use, the price was worth it.




This easel has a magnetic dry erase surface on one side and a chalkboard surface on the other side. I can see us getting plenty of use from it.

Great Deals Today

After work today I decided to stop by our local Salvation Army. It's a hit or miss thrift store, but I thought I'd see if I could find anything for the therapy room. I walked in and the lady told me that toys, games and puzzles were 50% off. So, I headed over to take a look. First I came across a brand new set of puzzles marked at 1.99. With the sale they were 1.00. They still had a scrap of christmas wrapping paper taped to them. These will be great for the therapy room and LJ loves puzzles.


(sorry for the bad picture...the clear wrap made it glare)

Next I spotted this set of Leap Frog letters. I have always thought these things were so cute and I love Leap Frog toys for learning. The problem is that they're pricey. These were priced at 3.99 so I got them for 2.00. I didn't check to see if all the pieces were there, but it appeared that most if not all were there. When I got them home, I realized that we were missing J and M. No big deal. For 2.00 it was still a deal. These will be great tool with learning more about letters.




And the best deal was this set of Pop Up Tents. Play-Hut is the brand. Again, I wasn't sure the shape of the item, but it was priced at only 3.99. It was hidden under a deflated float and I almost walked past without peaking under. I'm glad I looked. I thought this was another 50% off item, but it wasn't. Still a great deal.




I am very pleased with my finds today. All great items for the therapy room!

Handwriting

LJ has come a long way over the last few months with his handwriting. He struggled throughout the school year last year (PreK) just to get the L and J down for his nickname. Now, he's copying most of the letters of the alphabet with ease. I'm so proud of him. We bought a chalkboard a couple weeks ago to go along with the Handwriting Without Tears stuff and he pulled it out of his therapy box today. We worked with a few letters and numbers. I'd write it and he'd copy it. He even spelled mom when I asked him to write it! Way to go LJ.

Here's a pic of his name he wrote.

Therapy doesn't have to be expensive

With our insurance limitations and us having to spread out our therapy visits, I've had to come up with creative ways to do therapy activities at home. Meghan and Jan give me exercises and things to work on at home and I do my best to make them work.

For instance, Jan wanted LJ to sit on a large ball to work on his balance and strengthen his ab muscles. Exercise balls and therapy balls are a bit pricey but we'd purchased a play ball that is just slightly smaller than an exercise ball for just a couple bucks. It's the perfect size for LJ. When he sits down, his knees are bent at a 90 degree angle and his feet touch the ground.

Another activity is writing on a slant board. The school's OT (Mrs. Ricci) had suggested this. I promptly searched the internet for a slant board and was shocked to see the price of them. It's just a clipboard that's set at an angle. They were $50 and even $75! Nope, that wouldn't work for us. I bought a $1 clipboard and had dad cut two triangles from wood (think super sized door stops). I attached the triangles to the bottom of the clipboard and there you have it...a slantboard for $1. Dad had scraps of wood laying around, but even if you had to buy a piece of wood, it would've been less than $5.

I'd expressed concern about LJ not being able to write letters very well. I brought up Handwriting Without Tears to Meghan and we talked a bit about it. The clinic had the program so I peeked at the stuff to see what it was all about. It is a very good program. It makes perfect sense the way they explain the make up of letters. I was impressed. However; I was not impressed with the price. So, working with a limited budget, I headed to Hobby Lobby. At first I was thinking I would get 1/4" plywood and cut the letters out. This would've been fairly cheap (especially if I could get a scrap cut of the wood) but I wanted something I could do myself instead of having to wait for Dad to help me out. I thought about cardboard or foam core board (both would bend with lots of use though) and I thought about felt or fabric (not sturdy enough). I came across plastic canvas. AHA. I went with that. It's easy to cut, flexible but won't crease and tear, and is cheap! It took two sheets of it and at .69/each I was under $2 for the HWT letter pieces. Meghan told me how many of each large and small curve and large and small lines to cut. It works great. I'm still hoping to get the wooden ones cut out, but for now this works.

I need to get some pictures up to go along with the descriptions and I'll make that part of my weekend to do list. I'll add them soon.

I'll have to keep thinking thrifty as I put together LJ's therapy room. Since I'm seiwng and embroidering to raise the money for the room it's going to be a slow process unless the orders come flying in like crazy (which would be fantastic!). And I'm planning to be as thrifty as possible to make the most out of the money I am able to raise.

Introduction

Hi. I'm Amanda. I am a mom to three wonderful kids. Two daughters (A and T) and one son (LJ).

As an infant, LJ used to move his hands like he was riding a motorcycle. You know; twisting his hands like he's revving up the motorcycle. That along with his delays in speech got me worried. Another thing that worried me was the toe walking that I noticed. I brought all of these issues up with our pediatrician. I was told that the hand flapping was just a quirk of LJ's. The speech issues were okay because he's a boy and most boys are slower at reaching milestones. As for the toe walking, I was told that because he COULD walk flat footed that he was okay. The Dr. recommended waiting until age 3 for a speech evaluation so I went along with his advice.

After doing my own research, I decided to request evaluations with the OT and the ST when LJ was three. The pediatrician never advised these evalautions himself. I had to call and ask for them. We began seeing an OT at University Hospital. We also had a speech evaluation but LJ was denied for services. After several visits with the OT, we ended up talking to another ST who asked lots of questions. To make a long story short, the ST ended up getting us approved for therapy under "feeding difficulties". We continued with therapy for almost two years before I called the pediatrican to request the PT evaluation.

We saw the PT and started therapy. After just a few visits, the PT recommended AFOs for LJ. He had decreased range of motion in his legs from the toe walking. He was fitted for the braces.

After all of these evaluations and therapy visits I realized that our pediatrician was not meeting our needs. I switched to a pediatrician recommended to me. We set up an appointment with Dr. Paige Ward. At the end of our 30 minute appointment, Dr. Ward told us she suspected autism and ADHD. Finally we were getting somewhere. She referred us to a psychiatrist. We had an appointment but it was a couple months away. I was told about a pychologist that was good and I called to check their availability. Lucky for us, the office had a cancellation for the next week! I told them I would take it. We had our evaluation done which basically consisted of me filling out tons of papers with questions that I had to rate. They also did a brief interview with LJ alone. With this information the psychologist diagnosed LJ.

Asperger's Syndrome
ADHD
some Oppositional behaviors

We were finally getting somewhere! We finally had some answers to all of the questions that we've been asking since LJ was an infant.

After the diagnosis, we switched therapists. We started going to NDT Programs. We were already seeing the PT (Jan) at NDT and we started seeing the OT there as well (Meghan). We absolutely love this clinic. Unfortunately our insurance limits our OT and PT to a total of 20 visits per year. We should be going to therapy once/week but that would mean we would only have 2 1/2 months of therapy a year then go 9 1/2 months with nothing and start all over. This obviously won't work because it wouldn't be effective. So we started the year off doing once/week and we've now moved to once/month.

I try to work with LJ at home as much as possible. We are limited because of space in the house. I recently purchased a 12x16 storage building that I had intended to transform into a sewing room but I've decided to use this for a therapy room. I am going to be sewing and doing embroidery to raise money for the room. My first goal is to raise the money to prep the room. I will need to run electricity to the room and install lighting. I'll also need a window A/C unit and flooring.

Wiring and lights $150.00
A/C Window unit $120.00
Flooring $130.00
Total $400.00

I will be keeping track of my progress on this blog. I will be posting progress pictures as well. I will also use this blog to post information about therapy and hints and tips for working with your child at home. I hope this blog can help someone out.

And thanks to Meghan for nudging me to start this blog.