I Think I Can!

Isaac can do so many things now. Here are some improvements since last time:
-He can cruise a lot better along furniture and even goes between gaps
-He put three shapes in the shape sorter toy
-He is clapping better and more frequently
-He is now frequently saying "ma-ma"
-He did imitative sounds for ma-ma and da-da. Big deal:)
-Can follow a few directions without gestures
-Imitates some gestures (like clapping)
-Understanding concepts of stacking blocks, throwing the ball, etc.

Right now I am working with him in the following areas:
-Walking
-Pointing to things he wants
-Fine motor skills, like the pincer grasp
-Speech
-etc.

It takes a lot of people to help Isaac get to where he needs to be, but he is doing so well and he catches on quick!

Children

I often worry about Amelia. No she doesn't have special needs. But she has a little brother with special needs. Right now she is only two(almost three) and she knows Isaac gets a lot of attention and babying. I want her to feel special in her own way, too. 

I hope they will be best friends.
When Isaac gets made fun of because someone is inconsiderate.
When someone says "retarded."
When a playmate takes advantage of his disabilities.
When people just don't understand.
I hope that Amelia will stand up for him. Because that's what friends do. That's what big sister's do. Maybe one day she will punch that mean kid in the face on the play ground and teach him a lesson. Ha ha. Maybe not. Okay, I hope not. I'll teach her better, right?;)

I want more children, but I have worries.
Would Isaac get the attention he needs when I do not even feel I can give it to him now?
Will my next child have Fragile X Syndrome? And will I be able to handle it?
Will my next child not have Fragile X and be best friends with Amelia and crowd Isaac out?
Will I go crazy with another whether I have one with or without FXS? :)
I have lots of worries. I don't like worry.

It's interesting having one child with Fragile X and one with out.

I love my children. They are both my little angels. They are my life.

Break Down And Build Up

You know those days when you just break down because your son has special needs? Oh yeah, I do. Most of the time I'm fine, but other days it hits you. For me, I think I cried every day this past week. Let me tell you why (if you want to skip this sob story, skip and read to the end, it's the best;) There's many things, but here is a few.

Isaac is going in for an ultrasound to make sure that his head is growing properly. Thankfully I don't think anything is wrong, but no one likes to do something like this because the Dr. tells them it could be a tumor, cancer, or something awful. I think his head is just finally catching up.

This week we have EHS,EI, OT, PT, and a helper coming to our house. (Early head start, early intervention, occupational therapy, physical therapy, and soon speech therapy.)

The words "borderlined" came up. That means closer to "Delayed." I've been waiting for that word. I've been fighting. But I can only do so much. As Isaac gets older I will strive to do what I can (in a way that does not drive me into exhaustion.)

I sobbed in the arms of my oldest sister who has three children with Fragile X because I want more children and do not know if that will happen. I felt like I was so faithful to have my own children until I actually had one and the reality of it all set it. I've pondered all kinds of options that I have, including adoption. I have some friends that have not even had children, so to even think of being "done" is weird. I have some who have kids Isaac's age and another on the way. I probably would, too...

But then...
you tell people...
you finally just open up...
And those people-friends, family-
...they help you.

They  let you know that 
                                                            you are NOT alone.

I've often said that having a child with special needs has opened up a whole new world to me. Well, part of that is your world. The fact that you may have a child with struggles and you are struggling, too. No need to list them all here. 

There are too many to count.
Because this is life.
We are here to have struggles.
It makes us stronger.

Let me demonstrate this to you with a parable:

There was once two horseman on a journey.
While on this journey they heard a voice tell them
to stop and take some pebbles.
So they got off their horses, grabbed a handful 
of pebbles and went on their way.
When they got to their camp that night 
the same voice said, "If you have done what I
have asked you will be both happy and sorry."
Upon waking the next morning, the two horsemen
found that the pebbles in their pockets had
turned into diamonds and the most precious jewels.
They were happy.
They were sad that they did not obtain more pebbles.

There are many ways to interpret this story, but I view the pebbles as trials. Although we do not always choose our trials, we do pick them up along the way of life. The more that we pick up on this journey of life, the happier we will be when our mortal lives have ended. In fact, we can see the benefits of them in our lives now. Those trials are the jewels that make us sparkle and shine. They make us who and what we are. Through the furnace of affliction.

Like the Provo Tabernacle temple I think of the Relief Society talk about how something we are "burned," sometimes to the ground, to become what Heavenly Father wants us to be. He has a plan for us. He knows us. He knows me and my circumstances and struggles.

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.