Monday, March 28, 2011

Crying over spilled milk

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Ayden spilled his milk at lunch today.  He wasn't paying attention when he sat it down, and it caught the edge of his plate.  I watched it happen, and am working on "uh oh" with the kids when they do something wrong. (It seems silly, but when my eyes can't be on them every second uh-oh can certainly save me a stain on my carpet or a kid or me falling because they spilled on the linoleum and didn't mention it)  So, I say "uh oh!" as I'm grabbing a towel to clean up.  I watched Ayden start to get upset, then reel it in only to begin screaming, flailing, and crying in the next breath.....  It took me a second, but I realized that he had a bib on so it didn't get him wet right away! 

Well, either he is getting better or I am (or both!) but we made it through cleaning up of Ayden, spilled milk, and the lunch dishes with minimal tears and he even washed his hands at the sink afterwards including 'humming' along while we sang the ABC's (to make sure we wash long enough, of course!)

Sometimes, the small things are all it takes to make your day.

Friday, March 25, 2011

PECS Cards

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We started having some success with PECS at home finally with Ayden.  (He's been using it at school since October or so.)  PECS is our main focus area for the summer - so I just started a little early.  I'm going to make all the cards myself for now, then just add new ones as needed.   I took the time and created a Photoshop template tonight that can hold 8 3x2 cards.  

We will be starting with some of his preferred items in food and toys for now.  I'm not positive how I'm going to start him off yet because I don't want to do the same thing they have at school.  School PECS consists of offering two cards, then letting him choose - I want to give him as much independance at home as possible.  I think at home, we'll use that method when he has a choice (i.e. would you like milk or water with your food); however, I am pretty sure I will also be keeping a board or book of things like eat or drink that is within his reach to bring to me when he wants that particular thing. I've often found with Ayden that he is happier doing things himself and feeling like he made the choice (even if we put restraints on his choice).  My thought is to keep those things with his visual schedule... Of course I won't throw it all at him at one time, so hopefully it will fall into place as we begin to implement.

I know my way isn't the 'normal' way to do things, but nothing that has the label normal on it ever works with Ayden so I'm not too worried.  I also added signs to a few of the cards, to see how he does with that.  He is starting to pick up more signs, but it seems they are the ones he chooses to - not necessarily the ones we push or request of him.

Here's a glance at my first few sets of PECS!


Thursday, March 24, 2011

A Small Success

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Ayden used his PECS system at home today to ask for what type of drink he wanted.  It's a small step, but one we haven't been able to get him to do at home yet.  (He uses it very successfully for some things at school such as his snack and his favorite toys).  I'm a very happy mommy and hoping it makes our summer goal of getting our own PECS system in place very obtainable!

FXS Carriers

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After some debating in my head, I've decided to go ahead and post something this is not directly related to Ayden, but does pertain to me and multiple family members of mine as well.

See, my family carrries the FXS mutation.  As far as I know, it goes back to my Paternal Grandmother's family, most likely her mother was a carrier as well.  It can get mildly complicated, but here's a graph that kind of shows how it is moving through our family.  (for privacy issues, I didn't use any names, but Ayden is over there on the left with the (FX-M) notation.)

The first thing I think when I see that is how many carriers there are within my group of cousins. Being a carrier wasn't as big of a deal ten years ago when my dad was diagnosed. So much of the research now is showing there are multiple health issues that can arise from being a carrier though!

First, there is FXPOI. Fragile X Associated Primary Ovarian Insuffiency. Scary words, right? 20-28% of women that are Fragile X carriers experience this. Infertility, early menopause (we're talking prior to age 40), and/or decreased ovarian reserve.

Second, there is FXTAS. Fragile X-associated tremor ataxia syndrome. FXTAS is characterized by a progressive intention tremor, ataxia, cognitive decline, and generalized brain atrophy. For females, the symptoms consist of seizure disorders, thyroid disorders, and fibromylasia. It's much worse in males..termors, parkinsons-like shaking, balance problems, cognitive/intellectual declines, hand/feet numbness, loss of bowel control, low blood pressure, impotence... Keep in mind, this only affects carriers.
The two health issues listed above have been researched quite a bit. As Fragile X is fairly new, scientists and doctors have a lot to learn. Between when my dad was tested and I was tested I think was almost ten years. From when I was tested to when Ayden was tested was another 4 or 5 years. I'm quite serious when I say that between just those three tests in my family, the research has changed quite a bit. I don't want to even hit highlights because I'm afraid that some of the information that is no longer relevant will cause confusion, so I'll just leave it at that.

I have the honor of being included in a couple different FXS groups (including one on Facebook.) The groups are a mix of people with different types of FXS, but I find it amazing at how many individuals have the same type of health issues. I'm going to preface this next part with a disclaimer that these are my own inferrences (though shared by quite a few others in these groups) and not by any means medically proven yet. These are merely my observations from reading through a bunch of other peoples blogs, forum posts, and webpages.
  • There are a lot of Fragile X Carriers with Fibromyalsia. A lot. I'd never heard of it until my dad was diagnosed last year - so it caught my attention when it came up in these FXS groups. Later, I talked to my dad and found that he has three cousins that also have fibromyalsia. Those three cousins are probably all FXS Carriers as well. I don't really believe in coincidences.
  • Many carriers seem to have sensory issues including hand/foot tingling. 
  • I've noticed a growing amount of FXS children with Type 1 Diabetes - of those that I've seen mention this, I'd say about 80-90% were diagnosed before age 5. I don't have the numbers, because I wasn't looking for this specifically only happened to notice as my niece is affected so I tend to pay attention when I see T1 mentioned. 
  • It seems depression and anxiety are very high among carriers, especially those that are moms and even moreso of moms with FXS children. ((There is actually a study being conducted on this currently)) 
So, there is my take on FXS Carriers.  There is a lot of information out there on the National Fragile X Website about physical, cognitive, and social/emotional affects that you should read through if you are a carrier. Read through it.  Join the registry. Get tested. Be aware.  Not for me, but for you.  For your family.  Your children. Your grandchildren, siblings, cousins, nieces, nephews, their children, grandchildren....the list goes on and on.   Knowledge is power, and when it comes to FXS - more is definitely better.

Saturday, March 19, 2011

Our Park Visit - Success!

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Today, was a great day.

We took our first trip to the park today with the boys. It's always difficult for us going to the park because Ayden primarily hates it, and Issac loves it. At the very least, it's a two-parent job.

Last year, our first trip was in April. Ayden spent the ENTIRE time screaming. He didn't want to swing, he didn't want to slide, he basically didn't want to even go near the playground equipment. Of course, his low-tone little legs definitly don't help anything (what fun is a playground when you can't CLIMB). Nor the fact that the playground isn't on cement. Ayden doesn't even step on grass really with shoes, so of course wood chips are just a big NO for his little sensory issues. And let's not even start on walking with his balance issues and turned-in feet! Overall, sometimes it's just easier to skip it even when little brother enjoys it so much.

This year, was a lot better. Ayden has gained a lot of independance in a year, and immediatly wanted to go to the water next to the playground. He had spotted a duck and was all "BIRD BIRD" - very cute! So, daddy went with big brother while little brother and I went to the slides! Issac did amazing on the slides - climbed up and went down by himself. At the end, he got his hands dirty (Issac is not a fan of dirty hands) so I taught him to wipe his hands on his shirt and say "icky". Ayden and Daddy joined us, and Ayden went up on the playground equiptment with no prompting or assistance!! He ran around a lot, even on the 'wobbly bridge' and actually started to have some fun. He tried the slide, but certainly wasn't fond of it. Either way, exploring on his own, trying new things, dancing around, and laughing were just a couple of BIG WINS for this mommy. You'd think I would have left after that, let's not push it, right?

Well, we headed to the part of the playground with baby swings for Issac since he loved the swings so much last year. Ayden started screaming immediatly upon being led away from the playground by the water. He continued screaming the entire way there, and even once we got there. Daddy got him to calm down and have a little more fun playing though - including going headfirst down the tube slide so Ayden could hold his hand while he went down.

We tried to get him in the swings, but again - much screaming ensued! Daddy had the amazing idea to just put Ayden on his lap and swing. OH MY GOODNESS. My little man LIT UP the park with his giggle and squeals of delight. He had so much fun, it was like a different kid. I was so proud of him, but it was what happened right before we left that just melted my heart....

I was pushing Issac on the swings while Ayden was on the swings wth Daddy. When they were done, Ayden came over and wanted to push the swing. He has no concept of moving objects and that they can ya know, hit him in the I helped him learn how to get out of the way and push his brother. He did so well, and they both had so much fun. It's one of the sweetest big-brother things I've seen him do.

So, when I say SUCCESS in the post, I really mean it. It's amazing the difference a year can make. Here are some pictures, for those on FB with me - there are some videos up there too!

Just for reference....this was March 2010.
Crying, check.

Wanting Dad to pick you up, check.

Cuddling so as not to be put down...check.

More clinging to daddy...check.

More cuddling Daddy...check. ((Though makes for an amazing picture!)


Wednesday, March 16, 2011


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We're two weeks past Ayden's diagnosis today. The title of this blog says exactly how I'm feeling, but not all in a negative aspect.

I'm overwhelmed first because of the information flow I've been receiving. For those geeks out there, it's much like I imagine Neo felt the first time he was hooked up in The Matrix. Definitely not a bad thing, I want to sponge all this up not only for Ayden, but also for my other family members affected by FXS.

Second, I'm overwhelmed because of the outpouring of support from the FXS community. I am definitely a social networking person - facebook, blogging, twitter - you name it and I probably do it. I have a ton of friends online that I've never met in real life, and some that I met online and HAVE met. I started by adding this blog to the Fragile X Webring and then went to FB. I added at least 10 new people to my friends list just yesterday and had conversations with almost every one. I'm SO EXCITED at how amazing the people are I've met so far and how willing to help they are as well.

Third, I'm overwhelmed because I'm filling out forms for Ayden's FXS clinic visit and DON'T REMEMBER ALL THIS STUFF. Again, not bad, but mildly frustrating. I need to get more organized so I can just go to my files and find the information I forget. (my large stack of papers on my bedroom floor disagrees!!)

On top of all this - I'm planning my other sons's 2nd birthday party, still dealing with some fallout from our crazy January (I SO need to remember to call the insurance company), and oh yes, dealing with what I call a 'developmental spurt' from Ayden. Much like a growth spurt, I find Ayden has times where he will just start doing a bunch of new things at once or as in this case, start understanding a lot more at once. It's great, but in this case causes an influx of screaming, whining, and frustration as he is again dealing with being unable to communicate with us. (for both of us!)

Sunday, March 13, 2011

MIND Institute

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Friday night, we had an interesting late-night call! Around 10:30 PM, my phone rang with an out-of-state number. I assumed it was a wrong number given the time of night, but turns out Louise from the MIND Institute was returning my email with a call.

I was able to call her right back, and we talked for about a half hour. It essentially boiled down to a couple things. First, they definitely would like to see not just Ayden, but also myself and Issac. Second, they are very interested in seeing us because of the 'family pedigree' as she called it. Studying how FXS moves through families is of a great deal of importance to them.

The end result, we put ourselves on the waiting list. (It's pretty long of course) We need to contact them again in three weeks to find out who our scheduler/coordinator will be, and then take it from there. In my head, I'm thinking at least fall before we would go if we do end up going. They are really interested in children around the age of 2 that are carriers (and control subjects), so Issac may get us in a bit more quickly than 'normal'. We would have to have him tested first, but we figure we'll talk about it when we know more and decide then. Issac is not yet showing any signs of having FXS at all at 23 months.

I'm very happy things seem to be falling into place for us. I feel a bit overwhelmed right now with all the "new" things we can do for Ayden and am SO excited to move forward getting him all the help we can.

Some Words

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It's really a joy to hear your kids begin to speak, but for those kids where there is a speech delay - well, let's just say it's about 100 times more amazing when you hear them actually start verbalizing.

I hesitate to make this post, because we've gained and then lost some speech before - but you never know this time! Ayden started saying a few words back in December, but after our family went though a car accident in January the words seems to disappear. Ayden definitely regressed a little, but it seems to be coming back now. I had the luck to catch a few of the words he's been saying on video this morning. If my count is right, we're up to four actual words now. Mama, bird, car, and now ball.

I was going to put the video up here..but it is being difficult right now. For those of you that are on our can view it there.

Friday, March 11, 2011

Parent/Teacher Conferences - Winter 2011

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We had the joy of sitting through our second parent/teacher conferences this past week. It's funny how I still don't feel old enough to be doing those, my how time flies. We are so happy with how well Ayden is doing in the ECSE program at school. I was so scared sending my three-year-old off to school on a bus, but I can say it has helped Ayden grow in leaps and bounds.

The ECSE assessment 'grades' by using a 1-3 scale. 1: Area of Concern 2: Making progress towards Expectations 3: Meets expectations. Ayden did show improvement in many areas from the fall, which is great. Here's a basic summary, keeping in mind he does things things at home as well.

Showing improvements in independence and working/playing with others. He can put on and take off his coat by himself as well as take off his shoes, socks, and pants. He's starting to play more with the other children as well instead of just watching them play.

Pre Academic:
No improvements in this area as far as actual numbers; however, he is getting better at recognizing/matching colors and shapes even if there wasn't a number change according to the teacher. To be fair, the other areas in this are "says alphabet and responds to simple questions". Kind of difficult to do when you are non-verbal.

Definite improvements in this area. Back in the fall, Ayden wouldn't even touch a crayon or writing utensil! The areas for this were tracing line, shapes, letters, and numbers - which he definitely cannot do. I need to make a note to add this to our summer goals as it is something we can do very easily at home.

HUGE improvement in sorting by color, shape, and size. He couldn't do this at all in the fall. They started him on counting and patterns, both of which he isn't doing well in. Of course, counting falls under that whole non-verbal thing too.

Physical Development:
Doing better with walking on a balance beam and running. Ayden has bad balance since he walks on the insides of his feet...this is pretty good for him. Needs to work on catching a ball with both hands and jumping.

Ayden's IEP goals for language are pretty broad. Essentially he has a large goal, with two small goals that lead up to that large one. His major goal is to communicate his wants and needs to others more consistently. (as compared to May 2010). He is currently using pictures to request items at snack time[in-school only] and also to request preferred items. He smiles and makes eye contact to the correct person when he wants to initiate his request. He is also fairly consistently using the signs "please" and "more" to request things, and has been using "all-done", "thank-you", and "bird" as well. As of the past few weeks he has been doing "moh moh moh" to get our attention or ask for more. Very good things in the land of language for Mr Ayden. Our big goal for this summer is to get him using a PECS system at home. I'm going to get one that works well for him here, then hopefully make a copy for him to use at school next year.

I'll have to come back to this post before we head to Akron so I can make some notes. They are going to help us with the IEP a little bit, specifically in setting goals that aren't quite as broad as the current ones are so I definitely want to keep these impressions freshly in my head.

Summer 2011
- Work on letter/number tracing
- Implement a PECS system at home
- Work on identifying colors/shapes
- Work on sorting by shape/color/size

Fragile X Clinic

It's been a week now since our official diagnosis. Even being prepared for the diagnosis didn't make me realize actually how much more there was to do for Ayden. To compound our list, we also had parent/teacher conferences at his school this week! First up though, FXS Clinics.

Mr Awesome and I decided after the diagnosis that it would be beneficial for Ayden to have him evaluated at a Fragile X Clinic. His current 'team' does an amazing job, and we try to stay consistent between school and home; however, we figure it won't hurt anything and it could definitely help him.

We don't actually have a FXS Clinic in our state, so we had to look at ones out of state which of course brought up insurance issues. We easily narrowed our choices down to three clinics.

1) The M.I.N.D Institute
We don't figure we will be heading here (Michigan to California is a LONG WAY), but since multiple family members of ours have been evaluated here I contacted them first. I doubt our insurance will cover an evaluation here or that we could afford to travel so far; but participating in clinical trials or research can cut those costs down. It never hurts to ask, right?

2) Rush University Medical Center Fragile X Clinic
This one is pretty close to us. We also have family in the area, which would help if we make multiple trips or needed a place to stay. I started out with a quick email to the clinic coordinator (found on the National Fragile X Foundation website) They called me within 4 hours of the email going out, I was pleasantly surprised as we figured it may be a week or so. After a call or two with them, we figured the initial evaluation was definitely covered by our insurance and they can get us in for a visit in May. That first appointment lasts for two hours while you meet with the doctor there. I requested another appointment other than a 12:00 PM in May after explaining Ayden napped from 12/1pm to 2/3pm and was given an alternate date/time in July at 1pm. We scheduled the 12pm figuring the appointments filled up fast and knowing we can cancel later if needed. I'll be honest, my first impressions were not great.

3) Akron Children's Hospital Fragile X Clinic
This is the other clinic fairly close to us. It's just about as far as Rush, but without the benefit of a place to stay should we need it. Again, I started off with an email to the clinic coordinator. Again, I received a call within about 4 hours of my email going out. I talked with the clinic coordinator for about 30 minutes and she answered all the questions I had as well as explaining how their initial evaluation worked. We'll meet with a behavioral therapist, the doctor, an occupational therapist, and the speech language pathologist over the course of two days. Not only was she very polite, she also knew LOADS about Fragile X - which is a major plus. She asked a lot of history and without me asking let me know they did intake appointments scheduled around nap times. Color me impressed. A quick call to insurance told me we were fully covered at this clinic too. While they could get us in during April, the dates were over Issac's birthday so we opted with a May appointment. (They do initial evaluations once per month)

So, we have an appointment with two clinics right now. We decided to keep both, then if we decide we don't like the Akron Children's Hospital Clinic, we'll keep the appointment at Rush. If Akron turns out to be great, then we'll cancel the appointment at Rush. Meanwhile, I'm still waiting to hear back from the MIND Institute. I don't expect anything to come from that, but you never know.

Thursday, March 10, 2011

Ayden's Story

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I've moved this post to it's own, separate page. I want readers here to be able to see where we were at diagnosis, and maybe be able to offer some hope or guidance to those that are going through the same thing.

Every child has a story, this is Ayden's. It's hard to know where to being, so I'll start at birth, and then continue to age 3.5 where Ayden was at the time of his official diagnosis.

Ayden was our first, my July baby. In some ways things were very difficult from labor on, but in others he was so easy. I had 17 hours of labor with Ayden, 5 of that in active labor. If you really want to get technical, I was actually in labor almost two weeks before he decided to come! He arrived kicking, screaming, and amazingly perfect.

Ayden was a great baby, he only had one minor issue - he couldn't suck at all. Not on a pacifier, not for nursing, not on a bottle. I had a lot of help with nursing, but he just wouldn't latch on so we went the bottle-fed route. Even with bottles we had to go with a special nipple that had a slow-drip for him since he couldn't suck on it. If the nipple was too fast, he would just gag because he wasn't swallowing fast enough. My lactation consultant told me he had a high palette, turns out she was right.

At eight weeks, he slept through the night. We heard "You are great parents!". At four months, he was keeping his weight on his legs and standing up with us holding him. Everyone said "He'll be an early walker" and we beamed. At five months, he made his first sound - said "mama" to get my attention. Our family told us "He's going to be an early talker!". By seven months, he wasn't crawling. He would sit up and just play with the toys around him. He smiled all the time and loved everyone. Wherever we took him we heard "He's such a good baby!" and we smiled knowing they were right. At eight months he started screaming. We slowly stopped taking him places because of the breakdowns. By nine months, he even screamed going to other people. "It's separation anxiety, he'll get over it soon." We believed what we were told. At eleven months he started crawling. Not a little scoot, but full out crawling. It was late, but we were told "He is just taking his time so he does it right!" and we listened. One year, thirteen months, fourteen months, fifteen months... Ayden wasn't walking or talking. "He'll do it when he's ready, look at him cruise around the furniture!" Two days before he hit 17 months, he took his first steps, followed by walking across the room. No wobbly-walk for our Ayden, he was running the next day. We thought "Everyone must have been right, he must have just been ready." At eighteen months, he still wasn't talking. Or clapping. Or imitating. Or coloring.

We contacted our local early intervention group at nineteen months and referred Ayden for a speech delay. EarlyOn evaluated him and agreed, his speech was delayed. He was assigned a speech therapist two times per month. At two, he was re-evaluated and was considered eligible for Part B services with EarlyOn. He participated in in-home speech therapy (SLP) every other week and in-home occupational therapy (OT) once per week for an hour each. He was also to attend the Great Start playgroups once per week for social delays for a total of 2-3 hours each week of therapy. He made tons of gains in OT over the next year. A lot of what the OT did was sensory integration.

At age three, Ayden was transitioned into the Early Childhood Special Education (ECSE) program at out local school. He attends class 5 days a week for approximately two and a half hours a day. He has one teacher, two aids, PT, OT, and SLP during that time (not all of those every day).

I'm trying to coherently put together where exactly Ayden was developmentally from 18 months until now and I can't place dates - so I won't try, but want to put down what I do remember by topics.

Screaming: Ayden screamed a lot around 18 months. That's all I remember him doing at that age really. He was unable to communicate at all and just a very frustrated, unhappy little boy when he couldn't figure out how to tell us what he wanted. His cognitive language has always been on-par with his age (or higher) so that definitely heightened his frustrations. He knew what he wanted, but could't relay that to anyone - thus the screaming. At 3.5 years, it's much better. We have very little actual screaming, (mostly it is just whining) and it only gets better as he learns to communicate more.

Communication: This goes hand-in-hand with the screaming really. Our first 'breakthrough' though was when we taught Ayden what "show me" meant. He would get upset, and we would say "show me" which prompted him to go to the object/thing that he wanted. He doesn't point with a finger still, but with his entire hand. At 3.5 pointing with his hand and rotating it for effect is still his go-to when he gets very frustrated. However, the more frustrated he gets, the more he lacks actually gesturing toward the object/thing that he wants so we often times have to calm him down quite a bit before he can relay that to us. His other form of communication is a few signs (please, more, all-done, and thank-you). At school, he uses pictures (PECS system) to convey some of his requests as well; but we have not yet integrated that into the home. He often relies on things like bringing us a cup when he is thirsty or going to the kitchen when he is hungry instead of the pictures that he uses at school.

Eating: I used to think Ayden was a picky eater, but was told by a dietician that he was not picky for his age at all. He does stuff his mouth with food almost to the point of gagging though, and still refuses to use silverware. We have slowly moved him away from cutting up all his food and he now takes actual bites of some foods, but it really depends on the food in question.

Sensory: This one is BIG for Ayden. He is getting better, but it's been rough. Until last summer, he refused to walk on grass even. He will not touch things with odd textures (and often times will not eat them because he doesn't use silverware and doesn't like how they feel in his hand - the textures in his mouth do not seem to be an issue). We gave him a sensory diet with his OT, and he gets much of the same thing at school now where he is encouraged and rewarded for touching things outside his comfort zone. It has to be done very carefully though, because if you push him too much he's just DONE. Screaming, crying, breaking down fits of frustration done. Sometimes different sounds will set him off the same way such as the fire siren or the coffee grinder. He will slowly get used to them, but it takes some time after that initial reaction happens.

Anxiety: Luckily, this isn't terrible for Ayden. His worst times are at places he doesn't know with a lot of people. We tend to avoid those places/areas or bring along things to calm him when he is at those. Trucks, spinning things, foods he likes...all good ways to bring that anxiety level down. As with sensory, you have to be careful not to push him too far or the possibility of hours of crying can take place.

Emotional: Hand flapping, hand biting, "humming", chewing on cloths, mouthing objects...these are all other things Ayden does based on some emotional queue. As he can't talk to us yet, we have only guesses as to why these activities take place. The best we can figure, he does most of them for either a sensory input or calming technique.

As is glaringly obvious from the above information, Ayden has a good amount of developmental issues. We have suspected FXS for a while now (I am a carrier), but have been weighing the benefits vs drawbacks of the test itself. See, with all his sensory issues, Ayden hates being touched. When people he knows do it, it isn't as bad - but people that he is not familiar with put him over the top. We are also unable to hold him down for any reason without him freaking out. Those reasons, coupled with a 3-vial blood draw, and teachers/doctors telling us a diagnosis would not make a huge difference YET made us very hesitant to pursue testing. The thought was that he would need to be either strapped down, sedated, or both to even have the test done and for us, the benefit of it was just not worth it. We were assured that the services he was receiving at school would not change even if we had a diagnosis, so we decided against it keeping in mind we had a good idea the result would be a positive test.

On January 6, 2011 Ayden turned 3.5 years old. That same night, our family was in a car accident and rushed to the emergency room. Ayden was over the top freaked out, needed a CT scan and x-rays. After almost three hours of screaming, it was decided to sedate him for these tests. Somewhere in the trauma of what was happening I had a 'light bulb' moment and asked them to draw blood for the Fragile X test while he was sedated. Luckily, there were no serious injuries from the car accident. We were discharged late that night to heal, and also await his test results. On March 3, 2011 Ayden was officially diagnosed with Fragile X Syndrome. He is fully affected with an incomplete methylation pattern also referred to as methylation mosaicism.

So many people have never heard of FXS when their diagnosis happens. We were lucky that we had in some ways, it made it easier. I have had a year and a half to slowly mourn the loss of what I had expected our life to be like. I remember many tears over the course of that time, but no time was worse than his two year EarlyOn evaluation. As he did poorly on each test, I slowly came to the realization our life wasn't going to be the same and as the evaluators left that day, I lost it. Choking, sobbing, uncontrollable tears for hours turned into anger. Why me? Why us? Why Ayden? How could I have done this to him? It took a couple weeks to pull myself out of that funk, but I had to pull myself together, and my reason for that was our second child. He was only a couple months old at that time and he needed me just as much as Ayden did. I had to put aside the guilt, the anger, the sadness and just let it all go. It's been almost two years since that date, and merely a week since we got his test results, but I didn't shed tears this time. The thing I had to learn was to remind myself this is all a day at a time. I can't worry about what tomorrow holds because with FXS you just never know. I can't tell you my son will be talking by this time or my son will be potty trained by this date, because I just don't know and no one can tell me. All I can do is rejoice in the fact that God has given us Ayden and know that he was put with our family to make it perfect. Other than that, it's just a day a time.