I have figured out the answer to my question.

Earlier this month I was asking, “Why can’t I let this go?” in regards to Halloween. I read an article on Boston.com today and leave it to another parent to provide the answer.

Other than her wedding and the births of her children, said Diane Carfarelli, her happiest family moment remains Jack’s first go-out Halloween. “I always wanted him to have the childhood he deserves,’’ she said softly, when asked what having that experience meant to her, “even if I’m uncertain about his future.’’

*Tears* That’s just it exactly. I want that for Monkey too and every time one of these seemingly pointless rituals turns into a failure…I feel like I have failed him.

The article can be read here: Facing down fear, a treat at a time. School helps autistic children find some Halloween joy.

Writer’s block.

I’m having serious writer’s block these days. Everything I pound out takes three times longer than it should, it’s very frustrating. It’s so bad at the moment that I’m even having trouble writing facebook status updates. Now, I don’t care who you are, that’s just pitiful!

In lieu of anything to say, I decided to add a new category to the blog. I get quite a few search hits of people asking about one particular topic and it invariably comes up when FX parents gather, so I decided I’d make it a little easier to locate the info here. If you look over in the sidebar you’ll see a drop-down for “Categories.” Potty Talk is the newest. I know it’s a struggle for all of us who are dealing with Fragile X, I hope some of what we did and learned will be helpful for others who are still in the potty training trenches.

In my opinion there is one thing that is absolutely critical for potty training any child with Fragile X and that is this, YOU HAVE TO BELIEVE IT WILL HAPPEN. I feel ALL CAPS strongly that you keeping your belief that it will happen alive is absolutely critical to success. 

Now, I know, it might not. There are people who will tell me it did not happen for their child no matter what they tried, no matter what expert they sought out and I am not saying they didn’t try hard enough. I’m not judging them in any way. I know they did their very best.  I know they wanted it for their child just as much as I wanted it for mine.

But here is the problem…as soon as you believe it won’t happen, as soon as you give up, it won’t happen. Ever. I’ve heard stories of people in their 20’s finally being potty-trained. Someone didn’t give up even after 20 something hellish years of changing dirty diapers. What if your child is that child? What if they don’t learn until they’re 16 or 26 but they learn? Won’t that be worth it?

Don’t give up! I know, I know, easy for me to say since I’m on the other side of the potty training tracks but I was told when Monkey was 2 that I shouldn’t even try until he was 9. I didn’t listen and I don’t want you to listen either. Start now. Believe it will happen.

I love this!

Welcome to the sorority of strong and broken hearts
by Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores.

I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip to Holland” and Erma Bombeck’s “The Special Mother”. We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.

We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

His teacher is going to love me.

When my eldest niece started kindergarten, back in the day, I recall my sister-in-law telling me that parents send off their little, sweet 5 year old baybees and the school sends back little, eye-rolling 5 year old balls of attitude. I was prepared for this. What I wasn’t prepared for was the fact that it’s probably going to be my kid that corrupts all the others.

See, Monkey has been working hard this weekend on perfecting a new phrase… “Psht. Whatever!” I have no idea where he got that from.

Ahem.

Oops?

What do you do if there is no LINKS group near you?

I’m going to assume that every single one of you has clicked on the map here and found a LINKS group to connect with. If the closest LINKS group is in another state, that’s OK! You at least want to get on their e-mail list even if you can’t get to the area for events regularly. What you might discover is that there are other people from your area who are also participating in that group because there isn’t anything else closer. You might just find someone who lives right around the corner from you. **WAVING MADLY TO MY NEAREST FX PEEPS**

I can tell you this though, based on my experience and what I’ve heard from other parents, if you go to just one event…you’ll be hooked. It is the most amazing experience to be in a room with people who know, from the top of their heads right down to their toes, what it’s like. To be able to look someone in the eye and say the things you can’t say to anyone else because they won’t get it is such a huge relief.

Now, let’s say you’re in the Northeast Kingdom in VT and your nearest group is in southern NH or western MA. You may feel like you’re on the moon. It’s just too far to travel for a day trip, right? You still don’t have to be on your own though. Through the power of the interwebs the Fragile X community is still making connections and still reaching out to families and providing support.

I’m a blogger so I’m partial to my fellow bloggers. I love the glimpses I get into the daily lives of families who are walking the same long road as I. If you have a blog that’s Fragile X related and are not yet a member consider joining the Fragile X Webring. If you don’t have a blog, first, WHY NOT? And, second, check it out anyway and see all the cool blogs other families are sharing.

My second favorite way of connecting with other families is FACEBOOK! I’m a wee bit obsessed with the Facebook if the truth be told. There is a Fragile X group on Facebook. There are a bunch of LINKS groups on Facebook. Most importantly, though, there are TON of awesomely funny people on Facebook. It’s not all FX all the time but they are the first people to shout out “Me too!” when Fragile X pops up to slap you in the head or tickle your funny bone depending on the day. I use pseudonyms here to preserve Monkey’s privacy as much as possible but I’m out in the open on Facebook and love to make new FB friends. If you’re on Facebook and want to be friends drop me a comment and I’ll respond by e-mail. Who knows, we may already be friends! **WAVING MADLY TO MY FACEBOOK FX PEEPS**

Another way I connect with families is the FRAXA’s listserve. It is an amazing resource for when you have questions. I save a TON of messages from the listserve, so much useful information gets passed along through there. I get ideas on therapy, reading programs, math programs, sensory diets, you name it. It is awesome. Also, since both Katie Clapp and Dr. Mike are active members you get some neat updates on research and FRAXA fundraising efforts. Join here.

One last way is the My Fragile X Community supported by the National Fragile X Association. I’ll admit that I’m not active there but I did add my info and I do use it at times. I think the very coolest part is that if you have, say, an adult child with Fragile X and you want to try to find other adults with Fragile X near you…there is a very cool search function that will allow you to search by age range, location, etc. I encourage you to at least enter your info, you never know who will find you!

If you have other ways of connecting that I’ve missed, leave a comment! Heck, leave a comment anyway because I kinda feel like I’m talking to myself these days.  Sheesh.

Had you noticed there’s been no talk about our Vantage Lite?

You may recall back in June I put up this post:

In a stunning turn of events…

Monkey has a freaking assistive tech/voice output device. Holy crappen!

We have been discussing this issue since…hmmm, let’s see…June, 2008! TWO YEARS!!! Several times we thought we were close only for it to continue to drag on but at today’s meeting the Assistive Tech trainer/evaluator had  a “loaner” device for him to use, until his device arrives in July, IN HER HAND. An actual, honest to goodness device…I was so shocked I didn’t even look at what it is, lol. She did say that it’s the older model of the VantageLite which is what he’ll be getting.

AND, AND, AND…my insurance company is paying for it.  Stunning.  Simply stunning.

Then there was radio silence again until August when I posted this gem:

It looks like we finally did it!

Monkey’s assistive tech device, the Vantage Lite, will be shipping early next week!! Our insurance company is paying for the device (about $7,300) and the school system is paying for the carrying case and the software (about $500). I am in shock. After 2 years, 2 insurance companies and countless forms…he’s got a voice.

A tip for any of you out there who need a device and haven’t yet been able to get it covered…it’s being covered as a prosthetic device, not durable medical equipment. Neat little trick, eh?

Did you think maybe we just totally forgot about the device or what? We did not. What happened was…nothing. There were 4 parties involved in this fiasco and, unfortunately, we had none of the power. We have spent the last 2 months making calls and being lied to. Repeatedly. Between the school, the device manufacturer and the company they use for financing we have been getting the runaround but good. We were told it was being shipped “in the next two days” or “early next week” every time we called. We were even told once that it had shipped but when we pushed for a tracking code that statement was retracted.

This is all just so much bullspit. I want to be really happy about all this, and I am getting there, but I’m still so angry that the school managed to nearly blow this entire deal with their lack of responsiveness and ultimately ended up costing themselves several extra thousand dollars because they gave my insurance company time to reconsider their percentage contribution.

But…Duhdee actually physically touched the device today so…bygones, right? Psht. Gimme a week or two.

A guaranteed motivator.

When I’m struggling emotionally, as I’ve been lately, I often have a hard time being motivated to do anything. Cleaning, laundry, showering…ugh. It’s all just so much damn work and I’d rather just, you know, sit and stare at a wall. Yeah. Or the inside of my eyelids…even better. I’ve found a guaranteed fix though, even if it is only short-term. Go to a Fragile X seminar.

Yesterday we were in Connecticut for the Fragile X Society of Connecticut’s 3rd annual Fragile X seminar. It was AMAZING. Dr. Don Bailey was there to talk to us about some of the results of the recent National Fragile X Survey. This was the first large scale survey of families affected by Fragile X. Previously a “large” survey might have had 100 participants or less, this survey included responses from over a THOUSAND family members! Amazing!

Some of the information gathered was depressing, for example, despite all of the awareness efforts of the National Fragile X Foundation, FRAXA and all of us the age of diagnosis has not dropped. Boys are still not being diagnosed until 36 months, on average, even though moms and dads are noticing something isn’t quite right around 12 months and even though a delay is confirmed and early intervention services are started around 20 months. This is so depressing!

We can do better, I know we can! Dr. Bailey indicated that he intends to spend a good portion of the rest of his career working on reducing this gap but he can’t do it alone, my friends. This is a call to all of us as moms, dads, sisters, brothers, cousins, aunts, uncles, grammys and friends of people affected by Fragile X Syndrome. We all need to do more to increase awareness. If you don’t know where to start, start here:

If there is already a LINKS group in your area, reach out…see what the LINKS leaders need. It surprised me to learn that, although there are some large LINKS groups with many participating members, MOST groups are being run on a day to day basis by one or two people. There is one or two people doing all of the outreach to local business to gain sponsors for the fund-raising and educational seminars that we ALL benefit from. There is one or two people reaching out to local media outlets trying to get newspaper articles or coverage on the local news stations to raise awareness of Fragile X. There is one or two people out there working their ASSES off to make all of our lives better. They need and deserve our support. Reach out to them. Yeah, you’re busy, I know. There’s school and work and raising a child with special needs and sick parents and on and on. I get it, I do.

Just take a few minutes to think about how you received your diagnosis. Think about the months and years of worry before you ever found someone to say, “You’re right, something is going on here.” Think about the months and years of stress and anxiety after that when no one could tell you what was going on. Think about being pregnant with your second or third child when you found out what was going on. Think about the months and years of struggle after that of trying to find appropriate treatments and services for your child. Think about all the times you sat in a way too small chair with a team of “experts” who were going to decide how they were going to educate this most precious being in all the world and not ONE of them had ever heard of Fragile X Syndrome before, none of them had ever been educated on how to reach your child, none of them had the first clue that the BOX they were comfortable with and understood was just so completely wrong for your child. What lengths would you have gone to if you could avoided even a little bit of that worry and stress?

We can’t go back and change our experiences but we can change how it will be for those who come later. We can change the lives and experiences of so many other parents and kids. Isn’t that worth making a phone call? Isn’t that worth volunteering to run a registration table for a couple hours once a year? Isn’t it worth putting your name on a list so you can be that soothing voice on the line when a newly diagnosed parent needs to hear from someone who lives the life that it will really and truly be OK?

If that all isn’t enough of a motivator, try this…yesterday, after the conference was over and all of the rest of the attendees were in their cars driving home, Duhdee and I sat down to dinner with 15 of the most amazing, motivated, loving people to talk about our lives, hopes and dreams.  We talked about the new Fragile X clinic opening in Rhode Island next month, we talked about ways to raise awareness, we talked about concrete ways to reach out to the people who are on the front lines of diagnosing and treating those with Fragile X.  We ate a most delicious dinner and enjoyed the company of some serious rockstars. It was a little hard to wrap my mind around sitting down to dinner and discussion with Dr. Braden and Dr. Riley1 but then you add in Paula2 and you have a recipe for total awe. I even got a hug, ’cause that’s how she rolls 😉

  1. I’ll share more of what they presented, it was a TON of amazing info! []
  2. She even brought an entourage, lol []

Make sure this is in your next IEP.

Once you write it in make sure your child’s teacher follows through 😉

This is a quote from on of the many handouts we have from Tracy & Mouse’s presentations. We ♥ Tracy & Mouse.

  • Simultaneous, not sequential learning. This is counterintuitive for many educators and therapists. Remember to teach by showing the finished product first, rather than through a sequential, step by step process.

This has been in Monkey’s IEP for a long time and yesterday Monkey’s new teacher saw the power of this approach for our kids.

She had a tabletop activity planned. It was a connect-the-dots worksheet of a jack-o-lantern. She demonstrated the activity (connecting the dots and coloring it) and explained how a jack-o-lantern differs from a pumpkin. She took care to point out that a jack-o-lantern is orange, has a stem on top and light shining through it’s eyes, nose and mouth. She wrote her name at the bottom of the sheet then left it on the table with Monkey while he and the other kids did the activity.

This is the result.

Every one of the points she made about a jack-o-lantern are accounted for.  He focused in on the details she was trying to teach!

For years they’ve been getting a similar result with hand over hand assistance and the first time they actually follow the IEP…look what we have!  Shocked doesn’t even begin to describe their reaction…or ours!  I actually followed up with the teacher this morning just to be sure he really and truly did this on his own…he did!