Paper Work

Having a child with special needs requires a lot of paperwork. I bet you never really thought about that before.

Isaac is now in what is called Friday's Kids with Kids On The Move. That is where he gets his early intervention help, including physical therapy. He will now be getting speech therapy and occupational therapy within the next month or so.

It's starting. I feel like I see him falling behind. No one else sees it really. I'm the paranoid mother, ya know. Obsessed with development.

Anyway, there was a bit of paperwork involved, a phone call or two and an hour meeting to get him into the "club." Now Jeremy and I get respite Friday nights from 6:30-9:30 pm. However, we are on the "on call" list, so we never know until 6:30 if we will get in. We also have to find a babysitter for Amelia or take her with us at that time. Kinda crazy. I'm sure we will be super grateful for it when he is older. Hopefully one day we will get off the on-call list and on to the regular list.

During this time I have also been trying to get everything together for the Department of Services For People with Disabilities. AKA DSPD. Now that is some paper work. Anything you could think of, they want it. And it will only get me on the waiting list. My niece just got in. She is eight years old. My other family members with FXS have not been accepted. It's gonna be a long road.

Well, Isaac is doing well. Here are some things he is improving on:
-Pulling up to stand
-cruising along on the couch, going between gaps
-Says Da-da all the time and will say ma-ma once in a while now
-Sleeping better, but still have rough spots
-Started clapping finally! It was totally legit!
-Finally getting to the pincer grasp stage
-Understands "No-no"and "Come here"
-More cause and effect understanding
-Put three rings (at different time) on one of those pole toys
-Can do two of the five things to make the animals pop up from his toy (pull and push)
-There are more little things, but those are the most prominent.


Here are some concerns
-Hair pulling
-Biting
-Gagging/throw-up
-Not knowing when he is full?
-Hyposensory
-I wonder if he is beginning to fall a bit behind with cognitive areas and so forth, such as his babble, identifying objects if you say, "Where is your ball?", imitative gestures, and more.
-Attachment to bottle! (that can be for any kid)

He is doing very well, though. I just feel we have to be on top of things, not wait till he is delayed before we do anything about it.

The FXAU Parade Of Pumpkins

The Parade of Pumpkins was way bigger this year than last year. We don't know if we will do it again because it is so much work for just our family. A lot of others helped, but as far as getting all the details, etc. WOW, lots of work. I was over the media and got Rachael and I an interview at the Spanish Fork 17. BYU newspaper also wrote an article about us. Joel had ties to the Deseret News and that was great, too. We had many friends and family, posters, signs of all kinds, and more to help spread the word. We wanted a bigger turn out, but there were tons more people this year. If we do it again I think it will continue to get bigger and grow in popularity.

The larger displays sold for a hundred dollars or more. Some of the single pumpkins were as little as a dollar. The bids went great. Face painting brought in a lot of donations, too. Shambray and I did this for about two and a half hours. I was nervous at first, but it was a lot of fun:) Stephanie Goodman came to help while her husband played in the band. There were so many that came from our ward to support, lots of pumpkin donations came from our ward as well. It was just wonderful. I am so grateful for all those that came! It means so much. I even saw an old co-worker that I have not seen in years come to support me.

It's things like this that make you feel like you are part of something so much bigger. You realize how many people are behind you and buoying you up in your trials and even your good times.

Daddy and Me. He is always supporting the cause as a carrier of FXS. He even went to
Advocacy Day in Washington DC once!

This is a wreath I made

Lynn, Rachael's mother-in-law made these hot pads! I want one:)

Another amazing pumpkin carving by Aaron Reimschiissel, my brother

Coolest haunted gingerbread house EVER. Went for 90 or more.

That's my frame in the back

What I wrote for my Despicable Me display

This was a hit. It went for over forty dollars

Jeremy made a pumpkin, too. I wrote this for his caption

Jeremy's pumpkin

Julie Hillman in my ward put this together with her class and daughter. So awesome. It won the trophy of Best Display. Thank you! She dedicated it to my little Isaac. Totally melted my heart.

Setting things up Friday morning

Some donated trees, so we spooked them up

Mille wanted to help, too. She got to wear my t-shirt while we set everything up all day Friday. It was a lot of work! I'm glad it's done:)

Grow Old Along With Me

Yesterday I saw a glimpse into what may be my future. I watched an old couple, probably in their late sixties or maybe even seventies. Along side them was a man in his thirties, I would think. I noticed he had special needs, though "high functioning," as everyone says these days.

These were his parents. Never to be empty-nesters. Never to see their child get married, have a successful career, drive, be independent. They all grow old together.

I always joke that we might as well have another with FXS and make it a party. Growing old together. It reminds me of one of my favorite songs, "Grow Old Along With Me" by John Lennon. It talks about a husband and wife and it is very tender, but this last line can pertain to Me, Jeremy, and Isaac.

Grow old along with me 
Whatever fate decrees 
We will see it through 
For our love is true 

So, come what may in this journey, Jeremy and I might always have our little buddy with us for company. As we see Amelia grow old and become independent,  hopefully to get married and have children of her own. As we go on a mission altogether, wherever it may be. 


I hope that Isaac will be taken care of when I am gone.