BE The Change

So much love and support has been pouring in all day from family, friends, even people I don't know.  While this is circulating on Facebook, I want to get a copy here as well.  I don't know what the future holds for Arbaclofen (STX 209), but I know that when this community, my X-Family, comes together we are a force to be reckoned with.  I know we have done all we can for the many that are currently benefiting from this drug, and hopefully the many more that will.

So...what can you do?

1)  Make some NOISE!  Now is not the time to sit by quietly.  NOW is the time for action.

FACEBOOK users:  SHARE SHARE SHARE.  Repost the following blogs:

Holly: http://itswhoiam-fx.blogspot.com/2013/05/3-12-years-when-drug-trial-ends.html
Melissa: http://www.basicallyfx.com/fragile-x-news/today-we-start-again/
Bonnie:  http://www.fragilexfiles.com/2013/05/the-shocking-end-of-drug-trial.html
Kristin:  http://kristin-thecarvers.blogspot.com/2013/05/the-end-of-stx209-for-usand-now.html?spref=fb
Cortney:  http://fxsadayatatime.blogspot.com/2013/05/stx-209-almost-final-update.html

TWITTER users:  Tweet, tweet, and re-tweet.  Use this message and/or the blog links above.

#WishfulVoting wish Congress was funding #fragileX research so effective meds are available and funding doesn't run out before the FDA approval

2)  Contact your local media.  Call your TV, newspaper, and radio.  Have contacts in other media?  Utilize them.  Call in favors. Pull strings.  Make it happen.  Big or small - each piece matters.

3)  SIGN and SHARE the petition:  https://www.change.org/petitions/pharmaceutical-companies-sponsor-arbaclofen-stx-209-for-chidren-with-autism-and-fragile-x

4)  Contact your congressmen.

You can find your representative here:  http://www.house.gov/representatives/find/
You can find your senator(s) here:  http://www.senate.gov/general/contact_information/senators_cfm.cfm

You can click HERE to find the sample letter I used. (many thanks to Melissa for the template!)

5)  DONATE.  Yes, I'm going to shamelessly plug our fundraiser here because let's be honest - every single penny counts.  The National Fragile X Foundation and Fragile X Association of Michigan were key in getting me to Washington DC this year to advocate for this EXACT thing..funding for research.  They will be key in other families returning or attending next year as well and we want to give back.    Mr Awesome and I are hosting an awareness day event/fundraiser in July - and have put the donation site active.  You'll see a link on the side of this blog, but can also donate by going here:  http://www.firstgiving.com/fundraiser/adatp/abouelseoud

6) Please just keep being amazing.  Your support means so much more than you could imagine.  We few, we family of FX parents are always strong together..but we are even stronger with our extended family, friends and AWESOME network of support.  THANK YOU.  From the very bottom of our hearts.  The outpouring of love today has been nothing short of inspiring.


Finally... Thank you to Holly for putting this list together and Melissa for the letter template she posted earlier today as well.  Your hearts are breaking with the rest of ours and still you both find time to be advocates.  We are one voice, but of you are so often are the megaphone for this community.

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I Wish I was in Italy*

I feel like Fragile X has peeled off my rose colored glasses on the world.  I long for the innocence I once had  where I believed all children developed normally.  You don't think about it much when you have children, really.  Kids just learn, they are naturally curious and beautiful little sponges that soak up every little thing they hear and see.  They want to learn.  Crave that input for their tiny little minds.

I wish I could just sit back and enjoy it again.  I watch Emma play and wonder when she doesn't touch a certain toy if it is because she doesn't like it or because of the texture.  I watch her put a piece of banana in her mouth and take it back out immediately after making a face and wonder if it is sensory related or she just doesn't like the taste.  I watch her get frustrated when she wants something that she could climb and get off the couch - but she doesn't even try to climb; she merely gets frustrated and begins to cry.  I remember Ayden doing the same thing and I wonder if her spacial relations are also affected.  I love seeing the smile on her face as I count to three and she throws herself backwards to hang upside-down in my arms, but I can't escape the fact that she does it when she is upset and overstimulated -- that it appears she is craving vestibular input.

It isn't just my kids anymore.  I'm the one that friends ask about their own kids.  "Should we be worried?"  I don't think people really want to hear my answer -- they want me to tell them their child is fine.  That the delays Ayden has aren't anything they need to worry about.  I know because my answer is always the same, as is their response to it.  If you are wondering whether to worry, you should call Early Intervention for an evaluation.    I know other special needs parents will not be surprised by what comes next.  A dismissal of my recommendation.  A look of pity.  A courteous smile.  I never push, it isn't my place after all.   If there is one thing I've learned it is that a parent has to be ready to face the possibility of a problem before they will take action.

I do not enjoy being that friend.  I don't want to be the person who looks at children playing and sees possible delays. I don't want any of it.  I want the sweet innocence of a first time mom back.  I want to spin with my kids until we are so dizzy we fall to the ground giggling.  I want to run barefoot in the grass.  I want to play in the rain until all of use are covered in mud.  I want to go to the movies, to a baseball game, to the circus.  I want to go to a birthday party and not worry about my child screaming when the other kids sing "Happy Birthday".  I want to do all that without preparing, without having to wonder how long we will make it before we will inevitably have to leave ahead of schedule, without having to ignore rude stares, strange looks.

But then....

I remember that I don't need any of that.

Because I have him.

And them.

And them.

I really couldn't have imagined or asked for more, because Holland is pretty amazing* and I wouldn't leave for anything.

*The title of this post and last sentence are in reference to one of my favorite pieces of writing titled "Welcome to Holland" by Emily Kingsley.  You can read it by clicking HERE.

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2012 WEGO Health Activist Award Nomination

I was nominated for a 2012 Wego Health Activist Award in the Advocating for Another category.  If you would please take a few minutes to "endorse" me I would greatly appreciate it.  I would love to see Fragile X get more recognition, and these seems like an awesome way to do it!  Anything that brings more awareness to our community is great news for all of us living with Fragile X and especially for those that are not yet diagnosed and struggling for answers.  You can click on the green "Endorse Me" button below or on the main page.  Thank you SO MUCH for your support.

Learn more about the Activist Awards here:  Wego Health Activist Awards

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Awareness Day: 2012

July 22 is a day that is very special to me for a couple of reasons. First, it's my anniversary, and each year with Mr Awesome is certainly a reason to celebrate!! Second, it is also National Fragile X Awareness Day. For those that are paying attention...you will know that Fragile X Syndrome is a genetic disorder that I am a carrier of and two of my kids (as well as countless number of other family members) are affected by.

To help raise awareness, the National Fragile X Foundation has put together a Facebook event for this day.I would more than appreciate your support and help raising awareness if you could go to the event and "attend". By simply attending and having the event cross your newsfeed you may be reaching even just one person who has never heard of Fragile X before. Awareness is so very important to this disorder that is among other things the #1 known genetic cause of Autism yet so many people have never even heard of it! Thank you so much to all of you who take the few minutes to do this - remember, just ONE person can make a difference and today that person could be you.

Here is a link to the public event on Facebook:  http://www.facebook.com/events/122412367896486/

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IEP Season

Most people get into April and May and think about how the school year is coming to a close.  For those of us with special needs kids, it's a little different.  It is the time of IEPs and  setting goals for our kids for what we would like to see them accomplish in the next year.

This year is an important year for us.  We have the big decision coming up for Kindergarten.  Ayden is on the cusp really where we can easily hold him in ECSE a year or move him to kindergarten if we choose.  We had planned for some time to keep him in he ECSE classroom if he wasn't talking yet, but life tends to throw you curve balls so here we are more than likely moving him forward into kindergarten.   Here are the things we have to consider.

1)  Ayden is entirely non-verbal.  He has about 5 words, but doesn't use them spontaneously.   He is just beginning to use "mommy" to get my attention, but other than that it really is forcing verbal interactions from him.   He is effective at using PECS in our home, but as far as school goes it isn't as successful.  I'm unsure whether they just aren't pushing as much or if he just is following his normal pattern of difference at school. Either way, he almost certainly will need an aide to communicate.   This in itself is the reason we initially had made the decision to delay entering kindergarten.  We wanted to give him that extra year to get more speech down and possibly be able to enter kindergarten without an aide - essentially giving him as normal of an environment as possible.  While we still would love for this to happen, I think it is naive of us to think even if he starts speaking in the next year that he would not need some help.  I doubt he will just start talking in full sentences.

2)  Ayden has made huge gains socially this year.  He plays with other kids now, interacts, and even attempts to communicate.   We've known for a while that Ayden does much better peer modeling with children that are older as well.  This puts us in a unique position where moving him to kindergarten would keep him with the same kids, keep him as one of the younger kids in his class, and potentially help him continue the social development he has progressed to this school year (which according to the ASD coordinator is mostly on par for his age).  By holding him in the ECSE classroom, we could lose that.   I have no doubt he would make new friends easily as well, but most of his class will be moving up and keeping him with kids that are familiar with him is also a huge bonus.

3)  Our school district has moved to an all day kindergarten program.  This is actually fantastic for Ayden. His current team at school is recommending that we move him to 1/2 day ASD (autism spectrum disorder) classroom and 1/2 day general education kindergarten room.   We also have the option of putting him an all day general education room with para support.  Either way, we can have him in therapies (speech, occupational, physical).  There are downsides to both of these options - and unfortunately the choice we make will also decide which school he will be attending because the ASD classroom is only available for him at one school.

There are a lot of decisions within these three listed and other small things that are all going to impact our decision, but these are the large ones.  Thankfully, I have some great resources that come in the form of other amazing FXS parents via our Fragile X Facebook group giving me advice and ideas.  I probably don't mention this enough, but I'm very thankful for each and every person in that group.  We have about a month until our decision needs to be made for sure and an IEP setup - so we'll see where that takes us.

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iPad Apps - An Introduction

I finally went out and learned how to take a screen shot on the iPad, so now I just need to get it out of Ayden's hands to actually get some screen shots of our "favorite" apps and get some reviews going.  For now, I'm going to start with an introduction to choosing apps to put on your iPad....  Because the most common question I hear from parents of kids with iPads is...what apps?  There are SO MANY out there and many of them have the same type of information just put together in different formats.  So where to even begin?  It can be overwhelming, and even more so difficult to gauge which apps your little one will actually use.  No one wants to pay for an app that isn't going to be used or that is just overall not useful.

For us, the first thing I did was make a list of things we wanted to accomplish with apps.  Communication, colors, numbers, shapes, fine motor, parts of a whole, and overall output of information were top for us.  Once I knew I wanted the apps to do, my search became easier.  The Apple App store is set up fairly well in that you can search for "color" in the educational apps category and get a decent amount of hits.  From there, I looked at screen shots, descriptions, and especially reviews.

Overall, I ended up with about 50 apps to try out.  Of course the real test was seeing which apps Ayden would actually use....so instead of me even opening the apps I just let him pick and choose.  It became pretty clear over the course of a few days which apps he liked better than others, so I started removing apps and then looking for more to fill in gaps.  We repeated this process a few times, and each time I add new apps I just put the app on the iPad and Ayden will immediately gravitate toward new apps.  Sometimes he opens them and is done, but others he adds to his ever-growing list of apps he loves to play.

A great source is the website Moms With Apps.  Not only do they have fantastic reviews of apps, they also have something called Free App Friday, where they review apps and have either discounted or free apps specific to that day.  While this isn't set up for special needs kiddos, it is setup for family friendly apps - specifically to "promote quality apps for kids and families". 

Apps for Children with Special Needs is also a fantastic website to check out as a resource.  They review and have videos of apps specifically designed to help you decide if that app is what you are looking for.  They also have great programs for acquiring an iPad for those that may not be able to afford it.

I mentioned above how I use reviews on the app store to help me determine if an app is good to download or not.  I think one of the most important things we can do to help out other parents is leave reviews for apps - good or bad!  Just make sure you are constructive in why you do or don't like the app and how the description matches the actual app.  "My son didn't like this app" or "This is terrible" aren't going to help anyone make decisions, so be thoughtful and detailed about what you did or didn't like and why.

I'm going to start adding reviews for apps over the next week or two.  I have my list of about 15-20 apps that I'm going to give detailed information on their uses and how Ayden and Issac utilize these apps.  We have a unique perspective in that one child has FX/Autism and the other is on target for developmental milestones - I think it makes for interesting outcomes myself!

For now, please feel free to message me with any questions about apps, and also to leave your choices for favorite apps as well!  I would LOVE to get others input!  You can either leave a comment here, or look for my email address in the upper right hand corner of the blog.

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Are You Aware?

National Fragile X Awareness Day is Friday, July 22, 2011.  Please take a few moments to share Fragile X with someone who may not be aware.

Are you aware?

Unfortunately, the answer for so many is NO.  Today, I want to share with you some things that have been said to FX parents from family, friends, random people, and even some doctors.

Please note:  I've edited a few of the comments to keep some anonymity.

• My ex-husband (when my son was diagnosed) "Of course it came from her side"
• I was a Nazi Concentration Camp Guard in a previous life and my sons were Jewish prisoners. It is now my turn to reverse my Karma and take care of them...
• ‎So it's genetic. Maybe it'll go away.
• Are you sure they didn't get Fragile X from their immunization shots?
• Your miscarriage was probably a tumor and not a baby. Maybe this had to do with a tumor, too.
• This guy at church came up to me and my son and looks him in the eyes and says, " I know you can behave and be quiet, I've seen you do it. You need to stop all that noise you are making and be good for your mom." Thing is, my son, who was 5 yrs old at the time (2 yrs mentally), was being really, really good AND paying attention.  
• It must of been something I ate when I was pregnant that made it mutate.
• Oh...but he is still cute! 
• Isn't there a pill for that?
• Why don't you just give the kids some protein and that will cure the fx.
• You just need to spank him more. Then he will behave like a proper little boy.
• Can't you cure him like Jenny McCarthy did with her son??
• Speech therapy for a boy who can't speak?
• She doesn't have autism because she has such a beautiful smile..
• Will he grow out of it??
• Fragile X boys die in utero and usually are miscarried
• When I called an Autism group around the time of our dual diagnosis - I was informed I didn't belong to their group because Fragile X is large testicles and all that ... (Last time I looked my daughter doesn't tick that box!)
• He's suffering!
• When I first read about FX and asked for my son to be tested and spoke to our pediatrician cause I'd just discovered I was pregnant again and was worried about it - he told me not to worry as FX wasn't passed on like that! You obviously catch it through sneezing!! 
• You know, the geneticist told me that carriers are really difficult people to get along with.
•  Don't worry, I've been praying, and God will make this go away
• Aww... His poor/pitiful soul.
• If only you would have baptised him he wouldnt be autistic and he would sleep better with God watching over him.
• I had one guy tell me he could lay his hands on him and heal him.
• Lab: "Mrs Mom, it doesn't appear that your son (my youngest, then 2 months old when my oldest had already been diagnosed) has Fragile X, but we want to test him again just to be sure". Later I found out that they had really lost the test and didn't want to admit it. 2 months later: "Mrs. Mom, your son does in fact have the full mutation".
• I've had one doctor tell me I read to much on the internet because i was going in to get a blood test to see if i was in menopause.  It had been over 6 months of symptoms and I told he about FX, but he told me there was no way.   ((Later I went back and was able to say "I told you so!"))
• You like your children being the way they are because they are dependent on you.
• A comment from our (ex) pediatrician when I brought to him my concerns (again) about my son's development - "Oh, there's nothing wrong with him, he's just lazy!"
• He doesn't walk because you carry him all the time but then again muscular dystrophy may be an option, hmm.
• Genetics-Prof at Notre Dame- "Fragile X? That is so very rare- your son doesn't look like he has it. Chromosone testing is used to diagnose this- I wouldn't waste money on a DNA test!  ((This is where I take out the paperwork from Kimball Genetics that has the DNA test results.))
• My son's first Pediatrician told us that he was just "lazy" because he had an older brother and sister.
• Pediatric Neurologist - I know I have diagnosed your son with Hypotoinc CP- Fragile X is very unlikely- your son does not have any of the clinical features. Me- I have results from a DNA test- Doc reads the results- " I know the doctor that ordered the test- I didn't think about Fragile X" ((This is three years after the diagnosis of Hypotonic CP!))
• The best developmental pediatrician in our state told me after evaluating my son that "there is nothing wrong with him, he's just a boy. He will be fine when he goes to kindergarten. One day you will look back on this and laugh at how you were unnecessarily worried".  ((One year later, my mom, a nurse, brought me info on Fragile X and my son was tested. When I met up with this Dr. a few years later, I said, "Oddly enough, I'm still not laughing."))
• "There is no way we have Fragile X, we don't have that in Alabama."  Having already met several families from Al - I said, "Well, actually you do have Fragile X in Alabama"  Her reply - "They must not have been born here."
• I was asked if Fragile X was caused by inbreeding!
• When my daughter was diagnosed in 1995 the doctor told me "I guess she is just unlucky"
• I was once at a FX conference in Wash. DC. I ran into a woman I had met earlier and she was sitting at a table with a group of people. She said to me, "Oh, tell them about your family" and I did - one with autism, one with FX, one typical and one with tri-21 and yes, they are all biologically mine and their father's. The woman then said, "Isn't that just amazing?! Mary, you're a geneticist...what would you tell her?" Mary looked at me, quite uncomfortable by how the first woman was behaving and said, "I'd tell her to move to Vegas - those odds are amazing!" ((I laughed until I cried...so funny) 
• I was once told it was because I did not bond with my son while I was pregnant.
• I was told by a woman from India that I just needed to go see a witch doctor because they can cure anything, even a "little thing like that chromosome thing you're talking about".
• I was told that maybe it was something I ate...   
• The school told me I was my son's problem....and I quote "It`s kind of like alcoholism...if you let him be dependent on you..he will" 
• My daughter's second pediatrician. ....."She can't have FX, both parents need to be carriers and that is really rare" 
• Upon hearing that both of my (adoptive) daughters lived with involved disabilities a woman asked if I had heard of generational sin... As I looked at her with shock, she went on to tell me how God had punished people in her husband's family.  

Now that I've shared a bunch of others', I will share ours.  I want to preface this by saying our pediatrician is awesome and so good with Ayden.  I would recommend her in a heartbeat, but unfortunately she just wasn't as knowledgeable in Fragile X as we could have hoped.  I'm not sure that is all her fault, as even some of the medical journals are not up to date.  Her comment after being asked if we should test him for FX (I knew I was a carrier) "He doesn't have any of the physical features, you can wait till around 8 or 9 to get him tested"

While I don't have the time or space to debunk most of these ignorant statements above, I do want to share a little about ours.  Most FXS kids do not show the physical features until around puberty.  This includes the prominent forehead and ears as well as the longer face and large testicles.  In Ayden's case, the fact he was unable to nurse and had no real sucking reflex should have clued us in right away.  Also the high palette and low tone.  If not then, definitely when he crawled and walked late, didn't pick up much of any language and had no desire to imitate (still doesn't).  The anxiety he experienced around 7 months was also a clue, though we just thought it was separation anxiety.  Finally the spinning and hand flapping should have also been an indicator.  It is very easy to look back and see these things now, but more knowledge before would have certainly been beneficial for us.  I hope that by sharing this information here I may be able to help some other parent who maybe never has heard of Fragile X, but has noticed these types of things and maybe will find some answers.

As you may notice, today is Wednesday and no Research post.  Not only did I not have time to get through research this week, but also I have much to share with FX Awareness week.  Fear not, more research topics are coming soon!

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Clinic Visit - Day 2

...and onto day two!

Our morning started with the speech language pathologist.  (Who, by the way, was FANTASTIC).  Ayden was already in a mood when we got there.  I think the past two days were wearing on him after being in the car for 7 hours, sleeping in a new place, and the previous day's evaluations.  He did get a good night sleep, but we could tell early on he wasn't doing well. 

The SLP spoke with us about his history, his current IEP, and basically where Ayden was at overall.  We then had him go through the standard SLP test - he's done it before so he kind of knew how it worked.  He is asked a question, the points to the corresponding picture.  As expected, his receptive language tested right at or around his current age, with his expressive being of course much lower. 

The most interesting thing to me was that he actually has a medical condition that makes it so he can't speak, as opposed to him not wanting to speak.  Developmental Appraxia of Speech is what she called it.  Speech therapy will be very effective in treating this, and with time will hopefully correct issues.  It is why we often hear words from Ayden, then sometimes never again.  I do have to say it is a relief to know there is something we can do though and working with the SLP one-on-one should help out immensely.

So, our recommendatons from the SLP were as follows:  get a one-on-one SLP to work with Ayden to work on oral facilitation and touch desensitization to his face.  This is over and above what he is/will be receiving at school.  We should also work on comprehension past nouns including stabilizing words (under, over, up, down etc), verbs, and word approximations.  Also work on motor noises, environmental sounds, and identifying parts of a whole.  She recommended looking into an AAC device and/or alternative communication such as signs, PECS, etc keeping in mind to use multiple ways as they all will actually help facilitate expressive language.  She also recommended using purposeful play for most of these things I listed out above.  Another thing she was very insistant on was making sure we were following his non-verbal queues such as when he was done with something.  She said positively reinforcing the non-verbal queues he was sending to us is just as important as reinforcing the verbal ones - which I totally agree with, though we of course never thought about that.

She really was amazing to work with.  I wish we lived closer because I know she would work exceptionally with Ayden and our SLP experience hasn't been great after "firing" our first one, having mixed feelings about our second, and while I have no complaints about his in-school SLP, the one in Akron made me realize what we are missing out on. 

Our next and final stop was at the Occupational Therapist (OT).  I do have to admit, I was extremely spoiled with our first (and only) OT Ayden has ever worked with.  Ms Jane was so beyond amazing....it's hard to compare anyone else to her.  Unfortunately, she retired at the same time Ayden moved out of the EarlyOn program.  Anyhow...this OT left much to be desired.  We came in with specific questions of which none were answered.   The entire time we were with her she basically just asked questions we had already answered and put Ayden through the standardized testing - not very well I may add.  It took a lot of help from both Mr Awesome and I to get Ayden through it, while she mostly just sat there.  I know she CAN do that, but having been through this testing before - I know there are multiple ways to get the same goal and she seemed very unwilling to do anything outside her little box.  For an already over-stimulated little boy...it was just a lot.

As expected, Ayden again tested within his age range for cognitive functioning, but tested very low in fine motor skills.  Her recommendations were to work on drawing upright and full body movement to keep him interested.  We need to work on drawing and handwriting for him a lot to prepare him for kindergarten.  She did give us a couple programs to try as well as a few other activities to work on fine motor skills.  As with everyone else we saw, she did recommend additional one-on-one OT that was sensory and motor based.

Again, I am just so disappointed in how the OT worked with Ayden.  She was supposed to be better for FX kids, but it seemed like she was almost annoyed by Ayden and the fact he was overstimulated.  She was really the only person we saw that I have anything bad to say about.  I really hope her report that she sends is much more conclusive and answers the questions we posed to her.  I know Ayden would benefit from a sensory diet, but I have no idea how to incorporate that and that was our biggest question/concern we posed to her! (to which she replied "I'll put some ideas in my report")  The one positive thing was that she was from Michigan, so did have a few local resources for us. 

So, between the two posts here I think it's a good summary of what we covered.  We have Ayden's IEP coming up on Thursday to set next year's goals, and Mr Awesome and I have goals for him for the summer as well.  We basically had to piece through all this information and decide what was most important because we obviously cannot tackle all this at once.  Not only would it be overwhelming to us, but also to Ayden.

Now, we need to go about finding a local SLP and OT for Ayden for one-on-one work.  I have to admit, this is going to be difficult.  We of course need both of these therapists to have a pretty specific skill set - and while I don't think we will find one locally familiar with FX, I can hope, right?!   I emailed the FX Clinic coordinator at UM to see if they could give us some recommendations for therapists explaining we had just been to the Akron Clinic where they were unable to give local therapist recommendations (understandably so), but was basically told we had to fax them medical records and obtain a referral - THEN be seen at the clinic before he could talk to me about it.    FRUSTRATING.  So, I guess I will just have to start looking up some SLP/OT in the area and see what I can find out. We definitely want to get at least an SLP for Ayden over the summer.

And that is where we are at now.  It should be a busy week with the IEP coming up and we are once again going to try some potty training with little brother.  All-in-all, great fun. If anyone has any insight or recommendations that may help with any of this, I would be extremely grateful for the advice!

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Overwhelmed

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!)

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