Thursday, April 26, 2012

Schedules

We are beginning the visual schedule journey. I have to say out of all the changes we've made to try to help Dalton in the best ways possible this one scares me most. Scare probably isn't the right word. I'm going to go with bothers me the most. We've never really had a schedule in our household as far as our days go. We get up, eat breakfast, and then do whatever we want to for the rest of the day. We've never had a set time for baths or reading a book. Everything just happened when I had time and felt up to it. We've never never had a set routine for bed. I think this is why it bothers me so much. Because I know for the visual schedule to work I have to be consistent with it so he can learn to trust the schedule. That's probably why I've put it off for so long. But, I have the board set up and with the help from Dalton's teacher I have some pictures to get us started. So starting tomorrow we will begin the visual schedule! I'm a little nervous about it. But, I definitely want to see if it will help him!

Tuesday, April 24, 2012

Underestimated

I recently sat and typed out all the words that Dalton can and does say. I was very close to 100 words. I was so excited. This is a huge increase from the 25-35 six months ago.

But, before I typed out this list, in my mind, the number of words that he said wasn't anywhere near this amount. I had completely underestimated him and the words he does say. He has greatly improved in just the last month since, as I had said before, we have changed his diet slightly and added the vitamins.

We are changing his diet further and we are slowly taking more and more of the gluten out of his diet. We have not fully removed it all at this time but we are working towards it.

Sometimes I forget how many accomplishments Dalton has made on those bad days. Every now and then I forget about the light at the end of the tunnel. Simply because the light is a different color not because it isn't there.

I guess my point is sometimes instead of dwelling on the things Dalton can't do I'm going to focus (even make a list if I have to) on the things he can do and the things he is improving in everyday.

Isaiah 41:10-Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand.’

X

Saturday, April 21, 2012

My Comfort

We have been doing fundraising to go to the Fragile X conference in Miami. We have about half of the amount that we need to go in about a two week time frame. :) I've been amazed and extremely grateful at the response from our neighbors, family, and friends. We are really feeling the support!

Charlie and I are very excited for this opportunity to get to meet other families and other people who in a sense are on a similar journey as us. I say similar because just like with everything else no two experiences will be the same.

Plus we've never been to Florida :)

The last few months have been a pretty big roller coaster for us emotionally. It took us 2 years to get the testing Dalton needed and I had to convince his pediatrician, almost demand, that they send us somewhere to have him tested. Dalton has always been behind in speech but not too bad in other areas. Therefore I was always the "overreacting mother." Now I'm glad that I was.

Having a name for the issue doesn't fix it of course. But it tells us how we can give him the best help available and what services we need to be seeking. I'm not going to lie "fragile x" threw me for a loop. I'd never really even heard of it! So for us it went from Dalton has a speaking problem to he has Fragile x and you are a carrier and your daughter could be effected to! Talk about a swift kick to the behind.

God has carried us through all the completely life altering events and decisions in the last few months and I fully believe he will continue to do so. Of course in our humanly form we worry, stress, and lose sleep over the various questions that we ask. Are we doing everything we can? Are we getting the right services from the right people? What will the future be like for him? & our family?

Sometimes the only thing I want is for someone to say "it's okay." BUT here on Earth I will never get that for sure answer. Because honestly no one can tell me what tomorrow will be like, how far that my son will go, or what he can/will accomplish.

But, my heavenly Father knows the plans he has for Dalton and our family and he will never leave us nor forsake us. This is where my comfort will reside.

Psalm 108:4-For Your mercy is great above the heavens, And Your truth reaches to the clouds.

X

Tuesday, April 17, 2012

Just a vitamin?

When you are given a diagnosis of FXS or Autism from a physician, their professional opinion is "It is what it is, we are going to try our best to manage it and provide the best therapies available." But at this point there is no fix or "medical" way to improve the situation. Most doctors do not believe that a change in diet or vitamins will improve or change behaviors or help with other quirks.

I know that there is no fixing a genetic disorder. We can't change the genes we have been given and neither can the doctors.

With all that said, we decided to try some different vitamins and as of right now making minor changes to his diet to see if there were any changes for Dalton. The vitamins were something that a DAN doctor had suggested before we knew of the genetic side of Dalton's issues.

We've tried the suggested vitamin regimen. With just the changes with the vitamins it made a world of difference with Dalton's potty training! Within about 3 weeks. And I know for a fact that it made a difference because I took him off of the pills because I, myself wasn't completely convinced. When we took him off the vitamins he had accidents everyday, all day long. When I started giving him the vitamins again within the first week he had stopped having accidents.

The last two weeks we have taken him off of diary milk again. (Yes I took him off, gave it back to him, and now have taken him off of it again) This time he will not be getting the milk back. Because, he has increased his vocabulary as well as his pronunciation and his ability to follow multi-step instructions. He did the same thing when I took him off of it the first time, then stopped when I gave him the milk back, and now he doesn't have the milk and is doing much better!

I'm not a health freak at all. But like I said, trial and error has already proven for us that these small differences in just vitamins and diet is helping him. Which is the most important things of all.

I do believe that we have doctors for a reason but I also know that no doctor knows everything. Just because the pediatrician says it isn't worth giving a try doesn't mean that they are right.

Psalm 139:13-16 For You formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well. My frame was not hidden from You, When I was made in secret, And skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, The days fashioned for me, When as yet there were none of them.  

X

Friday, April 13, 2012

Welcome to Holland

Welcome to Holland

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. 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, 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."

The pain of that will never, ever, go away, because the loss of that dream is a 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.


Written by Emily Perl Kingsley

I love this little story. I think it is just about the only explanation of how you feel to find out that your child has special needs. Because no other explanation does it justice likes this one.

We are still fairly new to our diagnosis so all of the feelings are still fresh and near the surface.

I know that God gave Dalton to me for a special reason and that he took special time and consideration when he placed Dalton here with me.

Numbers 6:24-26 “The Lord bless you and keep you;The Lord make His face shine upon you, And be gracious to you;The Lord lift up His countenance upon you, And give you peace.”

X

Thursday, April 5, 2012

Stay at home Mommy!

Shop my AVON store!: Here's a sneak peak at some of the latest products available at Avon. Be sure to click

Yes this is an advertisement. But I started selling Avon to help supplement income because I wanted to quit work. I know I have posted about the struggle of working or not working before. My husband and I finally took a leap of faith and I quit work so I'm selling Avon as a way to help with the loss of income. So if you would be interested in supplementing or even eventually replacing your income source email me and I would love to share the opportunity information with you! Or if you would like to make a purchase check out the website orders of $30 or more get free shipping.

Matthew 17:20--So Jesus said to them, “Because of your unbelief;[a] for assuredly, I say to you, if you have faith as a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you.

X

Tuesday, April 3, 2012

Challenges

Dalton has been doing wonderful! We have been working really hard each morning. We are up to 55 minutes each morning. A huge success for us!
Dalton is even responding better to just simple commands. "Get your cup and bring it to me." "Dalton reach me that plate." "Dalton, go pick up your Buzz Lightyear and put it back in the toy box." He also is getting better with sorting. I have a set of colored counting bears in 5 colors (purple, red, blue, green, and yellow) and they have corresponding colored cups. I got them last week and we started working with just 2 colors. He has been able to sort all 5 different colors now.
I have been trying to make different games and activities to do with him. Which is quite humorous because I'm not a "crafty" person at all! But I'm digging deep and have been able to accomplish making a few things. But I have to figure out some new ones he has almost mastered all the ones I have now. I have to find ways to fill up our sessions in the mornings! :)

I believe that one reason God gave me Dalton is to challenge me everyday with something new. To make me learn and explore new things that I never would have thought I would have before. And I'm sure that those things will only increase from this point forward!

Deuteronomy 31:6-Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you.”


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