Tuesday, December 11, 2012

It Never Fails

You know that feeling when you tell someone your child can or cannot do something then when your child has the opportunity to prove you right in front of that person they do the exact opposite of what you thought was going to happen. I'm finding that with Dalton this type of thing happens a lot!

Sometimes it just things that I assume he isn't able or just isn't going to do that he does. Before I continue let me just say it took months for him to go into speech therapy by himself.

He started with a new OT at a new office today. He did AMAZING. Given OT seems more like playing to him for the most part but still. He went into the gym with the OT, who was also amazing,  by himself. I could see him through a one way window. He didn't cry the first tear. It took him a few minutes to warm up but once he did he did amazing. The OT had nothing but good things to say.

6 months ago I wondered if we would ever see a day he could go with someone that wasn't part of our family by himself to do anything like this. I'm starting to think that maybe just maybe I'm the one who has the serious separation anxiety.

I'm learning everyday with the right amount of encouragement and a little bit of space he can do so much more than I give him credit for.

X

Matthew 17:20 And Jesus said unto them, Because of your unbelief: verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.

Friday, November 23, 2012

Glad Tidings

I love this time of year! I am so excited that it's almost Christmas. Which is my favorite holiday. I already have my Christmas tree up (my husband says I'm ridiculous to put it up before Thanksgiving even happened but that's okay).

I'm so glad that Dalton is starting to get excited about Christmas festivities as well. He has been pointing to Santa Claus and the Christmas tree on one of his iPad apps. Barney has a Christmas movie in which they sing "The 12 Days of Christmas" he learned all the moves last year and he remembers most of them this year. We were practicing today. He has even started saying some of the words to the song (something he didn't do last year).

Sometimes, in the midst of all the things we deal with on an everyday basis it's hard to see the progress that he has made. When I'm trying really hard to drag the words out of him it's very difficult to remind myself that a year ago the word wasn't there to be dragged out of him. It takes something like the song to remind me of the progress that he has made and continues to make everyday. He has started going into speech therapy without me! This is a HUGE step for him. It's been almost a month since he started and he is doing very well with it.

The most wonderful thing to me is how great of a big brother he is. He is the best big brother. To him there is nothing like his baby sister, Payson. I hope that his attitude is the same with the new baby.

Overall in the last year Dalton has made wonderful progress and I know that next year he will continue. It isn't always on the timeline I have in mind but it does happen.

Dalton has been trying a new medicine for almost 2 months now, risperdal, for his hyper-activity. He had been taking Clonidine but it's only real usage was to help him go to sleep after a very exciting day. The risperdal seems to be helping keep him on an even playing field all day long. As opposed to his normal up and down and all the way around mode. We tried Zoloft and Paxil for his anxiety with no success with either one. They had a direct effect on his potty training was our number 1 issue. He also became aggressive while on them which isn't a normal thing for him. We decided we wouldn't try another medicine like those at this time.

X

1 Thessalonians 5:18 NKJV In everything give thanks; for this is the will of God in Christ Jesus for you.

Saturday, November 17, 2012

Continue On

In January, we will be celebrating numerous occasions. My sister's birthday, our 6 year anniversary, and welcoming a new baby. We will also be 1 year into our Fragile X diagnosis. It's amazing how in a year so much can change.

As I think back about the last year and all the changes we have went through. From Dalton's diagnosis, moving to Tennessee, and preparing for our new edition it amazes me.

When we first received Dalton's diagnosis it felt like time was frozen for a few days, like we would never move beyond the spot that we were currently occupying. Obviously I was wrong :) Life continued on regardless of how I felt about it.

I have had to face and deal with things that never crossed my mind before this year. I was in the "It couldn't happen to me" lane; until "it did happen to me." Being the mother of a special needs child is difficult and stressful but in the same breath it's wonderful and amazing. Because regardless of whether Dalton has special needs or not he is my little boy.

The Lord has seen us through every change and obstacle this year. He has never left our side. I'm positive that he will see us through the next year and every year that he keeps us here on this Earth.

Deuteronomy 31:6 NKJV 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.”

Saturday, October 13, 2012

It's Been a While

It's been a while since I wrote on here. It's been a crazy few months around our place.

Dalton has been doing fairly well. We have been experimenting some with medicine for his social anxiety and hyperactivity. It hasn't went very well and not nearly as successful as we had hoped for. But we will get there it's just a lot of trial and error I guess.

He is getting better with handling his speech therapy sessions, it took him a little while to adjust to the change but it is getting better all the time. I have discovered that his vocabulary is much broader than we ever imagined but we have to drag the words out of him. It's like he sees no point in saying the words more than he can't or doesn't know them. But, we are working on getting him to realize he has to say more than just the one thing that he wants.

His favorite is "choc" for chocolate milk and getting him to say "I want choc, please" is like pulling teeth sometimes.

We have started a new LINKS group, Fragile X Families of the Appalachians! We are super excited about it and can't wait to get the ball rolling on some activities! Look us up on Facebook!

Dalton isn't normally big on sitting still for pictures but my sister, her sister-in-law, and I took the kids to a nearby spot to try to get some of the two. Dalton did so well! I was thoroughly impressed. My daughter, not affected by FX, is normally the more cooperative and happy go lucky child. However, that day big brother showed her up!


John 14:27 NKJV -- Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.

Tuesday, August 28, 2012

Bad Days

Bad days, everyone has them right? Well it seems "Fragile X Bad days" are in a class all their own! And today was one of those days!

It seems like we can have 5 wonderful days then one day of meltdowns, crying, and fighting and it seems to take another 5 days to recover from that one bad day. Today was a "I'm not going to do anything you want me to" days. So, of course now that we're home and he has calmed down I start going back through the day to see "why".

I know that there is only so much I can control in life. There will be things that come up that I can do nothing about regardless of the amount of planning that I try to do. But, I also know that my overlooking or forgetting of one simple or big thing can cause a cascade fall of emotions and meltdowns for him.

One big issue right now for Dalton is that he has discovered the word "NO" and that he can say that for certain things and he doesn't have to do it. However, he has yet to understand that he doesn't always get a choice. This is how much of our conversations went today ME: Dalton put your seat belt on and leave it on. Dalton: NO! Me: YES! Dalton: YES, NO!

X

Psalm 144:1-2
Blessed be the Lord my strength, which teacheth my hands to war, and my fingers to fight: My goodness, and my fortress; my high tower, and my deliverer; my shield, and he in whom I trust; who subdueth my people under me.

Friday, August 24, 2012

Service Dogs

First off, this is off the subject of what the rest of my writing will be about today BUT Dalton let me cut his hair without a fight. No fighting, screaming, and no one holding him down tonight. I'm was excited and proud I could have cried! Just had to share!

Charlie and I have been debating getting a service dog for Dalton. For multiple different reasons. I have looked into multiple companies that all say they are the best to get a dog from of course. But man oh man are they expensive! $13,000 is about the average cost. It's crazy.

We have been discussing the pros and cons. The most important pro for me is to help Dalton not run when we go out in public because at his age he would be tethered to dog by a belt sort of thing and also there are "amazing" stories on many different websites of how the dogs have helped calm children down and given them a friend when it's very difficult for them to make friends with other humans. Of course the cons is the up keep of a dog, another mouth to feed, and most importantly for me cleaning up the hair inside of my house.

So, to me most of the cons that we have came up with are selfish "it's going to take more effort are our part" cons. I know that we will have to do tons of fundraising and probably have to wait for a while to get a service dog for him but I think we are going to attempt it none the less. If the dog can help in any of the areas it is supposed to be trained for it's worth a try!

Isaiah 41:10 NKJV
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

Wednesday, August 8, 2012

Conference

I enjoyed myself so much at the conference in Miami. I loved getting to meet families who deal with the same struggles as we do each and everyday. It's great to have a group on Facebook to connect with people but to be able to share a meal with someone and talk about your children and for them to just "get it" is indescribably wonderful.
On an everyday basis in our community when we are out and about with Dalton when he is having a bad day or just a momentary meltdown we get "the look." I know that most parents in general but especially any parent with a special needs child knows what I'm talking about. It's the "your child doesn't look different than other children so he must just be a brat" look. But at the Conference it was different. Rooms full of people that understood and knew the feelings that a simple look can bring on.

We learned tons of things from our sessions as well. I loved the sessions with Mouse and Tracy and my favorite was one with Cindi Rogers. I came home with lots of ideas and new strategies to try. It's just a matter of doing them now!

Philippians 4:19 NKJV
And my God shall supply all your need according to His riches in glory by Christ Jesus.     

X

Friday, July 20, 2012

Patiently waiting.

It seems we spend our whole lives waiting. When we are little we can't wait to be a teenager so we can drive and go on dates. Then we can't wait to be eighteen so we can vote or buy a lottery ticket. Then we can't wait to get married and have kids. Then when you have kids the "waiting for" list just gets longer and changes again.
We have kids then we can't wait for them to rollover, crawl, walk, and talk. These are the things that tell us they are okay. That you are doing at least an okay job. Then when these progressions are halted for whatever reason it is like being 10 again and feeling like you are never going to get to drive or go on your first date.

Dalton has moved beyond the initial things. Like I have said he has been doing so well. He still has his days but overall he is improving on some level all the time. We are trying a new medicine to help him calm down and another medicine to help some with anxiety.

However, I'm still waiting for the day I get to hear my little boy say "I Love You." It is a phrase that I have taken for granted until recently. It's something that I thought he would be saying two years ago and so I had been waiting to hear those words already then to add two more years to that seems like a lifetime. However, I know that when the words finally come they shall be that much sweeter.

The plans I have had for my family and my children are not what I thought they would be. My plans were nothing but passing thoughts. God had a plan and regardless of what I "thought" should be. His plans will be. His hand is in everything from the largest of decisions to the smallest task or "phrases" of the day. God's timing is perfect regardless of how my humanly heart feels at times.

X

Psalm 27:14 NKJV

Wait on the Lord;
Be of good courage,
And He shall strengthen your heart;
Wait, I say, on the Lord!

Tuesday, June 26, 2012

Encouragement and Comfort

Encouragement and Comfort. Two things it seems I'm constantly seeking. Everyone finds their's in different ways. Mine normally comes from a verse I read in my bible or a song I hear on KLove.

The other day I read a passage that just hit home in the deepest spot of my heart.

Psalm 139:13-18. You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous--and how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God! They are innumerable! I can't even count them; they outnumber the grains of sand! And when I wake up in the morning, you are still with me!

This spoke deeply to me because this tells me that God knew exactly how Dalton's life would play out. He knew while he was still being knit together everything about him and how it would be. God is amazing. Most importantly for me is that he knew exactly what family he was placing Dalton with. Which to me means that he knew that I was the only mother that was made especially for Dalton.

At some point in our lives we all ask the "Why me God?" question. We will probably never knew the answer to this question no matter the reason we are asking it this side of heaven. God didn't promise to provide a rhyme or reason or an explanation for the things that we will come across during our lifetime. He only promised to walk with us along the journey and to always supply our needs along the way.

Dalton has been doing AWESOME since our move it seems like new words come out everyday. He is also repeating us so much more. Payson is walking everywhere and they are causing all kinds of havoc together! This pregnant momma sure is staying wore out!

Dalton has started with a new speech therapist who is a bit more structured then anything he has done before. We have called in a Behavioral Therapist but it will be a little while before they can start working with him. I'm hoping that this will help with the way he treats people he isn't familiar with. He very rarely tries to hit me or anything. But, when people he doesn't know gets in his space or tries to make him do something he doesn't want to he starts fighting them. We will see how this turns out.

X

Isaiah 40:29-31
He gives power to the weak,
And to those who have no might He increases strength.
Even the youths shall faint and be weary,
And the young men shall utterly fall,
But those who wait on the Lord
Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint.

Monday, May 21, 2012

The Move

I haven't posted in a while but we have been super busy around here. We are moving. Well we are pretty much all moved in. Exception of a little bit of unpacking.

It was been an adjustment for all of us. BUT Dalton has done wonderful. He hasn't had any trouble sleeping or any extra tantrums (I'm going to insert YET here to try to avoid the bad luck I know is guaranteed to come along with this statement :) ). He has adjusted very well.

Payson has done great as well but I didn't really expect any issues with her at this point. Dalton does miss his Granny and Papaw pretty bad though. His little face just lights up when he gets to talk to them on the phone or we come visit.

Dalton has added at least 10 or more new words in the last week since we have started the moving process. I'm not sure what has sparked the difference but he hasn't just added words. He has added phrases "I'll fix it" "I'll find it" and he told my mom today "Oh no. It stolen."! haha. I have no idea where he came up with that one. But he was talking about our 4-wheeler which has been taken to our new home and is no longer parked at Granny's house.

Needless to say with the packing and moving our visual schedule venture hasn't gotten far. Because we moved 2 hours from where we were so everything was packed up and now we have been driving back and forth for his speech therapy and occupational therapy. But I'm working on getting him in with those services in our new location but didn't want him to miss any because he is making such progress.

Philippians 4: 19 And my God shall supply all your need according to His riches in glory by Christ Jesus.

X

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.”


X

Tuesday, March 20, 2012

To work or not to work?

I think as a mother this is a question many of us ask at some point or another.  It has always been a struggle with us I know and now with everything we have going on, it's an even bigger issue.
Where do we draw the line. I get so frustrated with the you have this much time to take off, you have this amount of time to miss without pay, & you MIGHT qualify for a leave or FMLA but you have to sign your life away & so does your doctor. That's after you pay the doctor $20 bucks to fill out the paperwork for you to take your UNPAID time off. Got to love the corporate system.

Not that I don't appreciate the point of FMLA and I've had to use my fair share of it. But, it's like I'm always torn between well "Are the kids sick enough today or will it be worse tomorrow?" And I hate that feeling or the worrying about "Will I have a job if I have to take multiple days off in a row!?"

So then you start looking at other options. Then you think "Well maybe I can do something from home" Then it is wading through the trash to try and actually find a job that will make you money and not just be a get rich quick scam! There is no ONE good answer for every one's situation. Of course, if your are a single parent that changes the whole ball game I'm sure.

I guess what I'm getting at is there is NO good answer to this question that I have been able to find so far anyway! It's all just one big balancing act and hoping you choose right.

I believe that as long as I put my children first God will work at the rest. That's what I have to rely on for now :)

Proverbs 22:6 Train up a child in the way he should go; even when he is old he will not depart from it.

X

Saturday, March 17, 2012

God's Little Messages

Dalton did very well this week sitting down each day with me and working on some different activities. This week we are going to move up to 35 minutes hopefully!

I've been so stressed out and worrying about the big things that I've been forgetting to relish in each small accomplishment! Which is important for Dalton and myself as well.

By "big things" I mean, will he ever be able to really interact with other children, will he get to play sports, participate and attend in a classroom, or sit through a Sunday school class. However, Dalton increasing his vocabulary and signing, increasing his time that he can sit down, and using the potty "WONDERFULLY" are just as big of reasons to celebrate. Because every little step that we take is one step closer to ensuring that he accomplishes the bigger goals!

God reminded me of this today on our way to the eye doctor. (Charlie slept on the way) So it was just me, KLove, and God. He made sure that they played every song that talked about him leading me through the storm, that he was always there even if it seemed like he was just a whisper in the wind, and that coming to the end of me there he would be.

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.

X

Thursday, March 15, 2012

Information Overload

Since we figured out what was really going on with Dalton, I believe I have read and researched more than ever! I have been talking to anyone who might have information, I'm reading every book and website, and talking to all these doctors and therapists! I feel like I'm beginning to drown in all the information I've gathered.

But now that I've gathered the information it's time to sort through all of it and decide what it the most helpful for Dalton. Which is going to be the most difficult part I'm sure.

It has been easier, once I got on the right track, to find the right kind of information. Studies, books, and other experiences from families and doctors. But unfortunately for this there is NO "One size fits all" fix. It's all trial and error. So do we start at the bottom of the list and go up or start at the top and go to the bottom of the list?

So at this point we are in a planning mode rather than an action mode. That's what it feels like anyway. Like I'm running, running, running only to look down and find that I haven't moved a single inch at this point.

Hopefully we will soon be on the right track for Dalton to start progressing forward in the weeks to come as we figure out what works best for him.

On a good note, we have made it through 25 minutes 3 times already this week in the mornings working together. Hopefully tomorrow we can make it 4 days. :)

Matthew 19:21--Jesus said to him, "If you want to be perfect, go, sell what you have and give to the poor, and you will have treasure in heaven; and come, follow Me."

Monday, March 12, 2012

Questions

Don't we all have questions. Multiple ones each day.

I read something not to long ago that said the "typical" 4-year-old would ask over 365 questions everyday. EVERYDAY!! Isn't that insane?

I remember when my nieces and nephews were younger and they would ask at least that many questions or more it seemed like when I would keep them. In fact, some days it still seems like they ask that many. It would drive me crazy. I would say "Please give me just 2 minutes without asking me a question! Just 2 minutes!" Of course they might make it 30 seconds before they were yet again asking questions.

And now I'm begging Dalton to ask me a question. I know other FX parents have to feel the same way. I try to coax it out of him in every direction. When he finally asked "Where's the remote?" because he wanted to watch Netflix on the Wii. I was elated! Not only did he say "where's the remote" but he shrugged his shoulders and put his hands in the air! Of course he got to watch Netflix.

Which told me two things. 1. He could say the words where's, the, and remote! 2. He understood the concept of asking a question which is probably the most important thing.

Being able to ask a question is something I have always taken for granted. Now I'm beginning to understand how very valuable this simple thing really is.

Psalm 24:1 The earth is the Lord's, and all its fullness, The world and those who dwell therein.

Psalm 147:3 He heals the brokenhearted And binds up their wounds.

X

Friday, March 9, 2012

The Unknown

The hardest part about all of this--Is the unknown. It's what has driven us to find answers for Dalton's issues and now even with an answer it's what plagues me everyday. What will he be like in 5 years, 5 weeks, or even 5 minutes some days.
I think as humans the not knowing is the scariest thing for us. Well for me anyway. Because the unknown isn't something I can't control or even guess at. Sure there is a certain amount of uncertainty in everyone's life. But there is also a "normal course" that most people's life will follow. So, to know that the "normal course" won't be an option is earth shattering. Because even if the course just slightly changes to the right or left or if it completely diverts to a different direction. You just don't have any idea of what is going to happen.

Of course regardless of whether I know the answer or not God knows it. That is what I have taken comfort in. God knows the plans he has made for me, Dalton, and the rest of my family.
We have made it through our first week of working each morning and sitting down for at least 15 minutes each day. He even sat a little longer for me today. :) Another small victory for us.

So, my husband ask me where I came up with "X Marks the Spot" as the name for my blog. I thought well maybe no one else gets it either. Since he was diagnosed with Fragile "X" and in the games/movies "X" marks the spot for a treasure. I thought it was truly fitting because Dalton is one of our little treasures.

The LORD is my light and my salvation; Whom shall I fear? The LORD is the strength of my life; Of whom shall I be afraid? Psalm 27:1

X

Thursday, March 8, 2012

Where it all began.

When Dalton was born he hit all his normal milestones at the right times. He sat up, crawled, walked, and ate normal foods at all the right times. BUT he didn't start talking. He did say da-da and bye bye before the age of 1 but that's where it stopped. It took a long time before he picked up ma-ma or anything else. At the age of 2 we got involved in our local early intervention program and now he is getting services through our local school district.

This week I have started getting him in a better routine and making him sit down with me every morning to do some sort of learning activity. This week we started with 15 minutes. He can make it that long and that is about it for now but we are working on it.

But every time he says a new word or a new sign I silently celebrate and sometimes not so silently if we are at home :) I'm learning very quickly to enjoy all of the little improvements! Right now Dalton probably has a 30 word vocabulary and 5-10 signs that he knows and uses. Of course if you aren't around him every day all day long you may understand 1/4th of the words maybe.

Dalton can, on the other hand, operate the Xbox  and every door/lock that he comes in contact with. He can't operate the mouse on a computer (yet) but he can tell you every button to hit to get it to where he wants it!

The Fragile X diagnosis threw me for a loop. I never saw it coming. Honestly I had probably only heard of it 1 or 2 other times in passing.  So, as happy as I was to finally have an answer was about equal to how completely confused and lost I felt.  So I have done the only thing I knew to do since then. Researched, read, prayed, researched, read, and prayed again.

At this point the only things I know for sure are: 1. My beautiful little boy has Fragile X syndrome. 2. God will carry us through whatever we may face. 3. Thank God I have a supportive husband and family to help us through.

 For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Jeremiah 29:11 NKJV

"X" Marks the spot Mommy

"X" Marks the Spot

My name is Brittany Marshall and my son, Dalton, has Fragile X Syndrome. Dalton just turned 4 a couple of weeks ago and we found out the diagnosis just a few weeks before that.

I'm still running through some of the emotions with finding out the diagnosis. Mad, denial, sad, devastated, happy to have an answer finally, and so many more. I'm finding myself getting to the acceptance side a little more each day. Because I know that the day that I got the call that told me the diagnosis, it could have been so much worse than "Fragile X Syndrome".

So, now I am at the point where I want to tell the whole world about it and help other people who are dealing with the same things. I know I'm just beginning this journey but along every stage of the journey there will be something that someone else will be able to benefit from.

"X" Marks the Spot Mommy