How has Fragile X Syndrome improved my life?

As I was sitting here reading through my past FX Memories posts looking for inspiration, it struck me that my posts, though not entirely negative in tone, are memories of how Fragile X Syndrome has impacted our lives negatively in the last 2 years. That does not match with my feeling that our lives are, for the most part, pretty darn good.

So I asked myself…how has Fragile X Syndrome improved my life? My initial thought was, “It hasn’t.” When I look at Monkey on a daily basis, I don’t see a boy with FXS. I see my curly haired, loving, clown of a son. When I look at Monkey and I am specifically thinking (or more accurately fretting) about FXS, I see the boy first but I also see the “real” boy as being buried under the anxiety. I see FXS as a barrier that keeps most people from seeing what I know is the “real” boy.

But, I have to give more thought to that last sentence because it’s really not true. It can’t be. So many people love Monkey. Even evaluators who only see him briefly, under the most stressful of circumstances, comment on what a happy little boy he is. People who see a bit more of him find him even more engaging. Our neighbors all love him. He develops a fan club just about everywhere he goes. So clearly FXS isn’t the barrier that I tend to imagine it to be.

I know that there have to be ways that FXS has improved my life. Let me see what I can come up with.

1.  It has made me a more thoughtful parent. I was a fly-by-the-seat-of-my-pants kind of mom, now I actually develop plans and set goals.

2.  It has made me a more educated parent. I get to spend time with some of the most amazing and well educated people. I have access to behaviorists and doctors and therapists who are all full of great ideas, any parent would be lucky to have this sort of team.

3.  It has made me a more attentive parent. Monkey isn’t verbal. He has a few words but he uses mostly signs and approximations of signs and words. We have to be very attuned to him to really get what he’s trying to communicate.

4.  It has freed me from the hyper-competitiveness of parenting. I am uber-competitive by nature so I would have been one of “those” moms and most likely miserable!

5.  It has made me less of a hypocrite. I can’t follow the “do as I say and not as I do” school of parenting. I have to be the kind of person I want Monkey to be. That’s tough, let me tell you!

6.  It has made me more compassionate. On Monday, we witnessed a child laying stretched out on the sidewalk tossing a hissy fit of massive proportions. Of course the first thought was, “Thank god it’s not my kid!” but there was no judgment of mom. There was no “Can’t she control her kid?” because I’ve been there. Well, not on a sidewalk in downtown Boston, but close enough.

7.  It has made me appreciate the little things. I’ve learned to celebrate even the tiniest of improvements. Major milestones are great and all but there is so much to be celebrated in between that I might have otherwise missed.

Dang, look at that, I thought I’d only come up with 2 or 3! I am sure there is a lot I’ve missed too, anyone want to add to the list?

Potty training appointment!

Our first stop on this fine* Monday morning was an evaluation with the potty training specialists at Children’s Hospital. 

Monkey has a huge fan club at Children’s Hospital, apparently.  The NP that we met with today had already heard about how AWESOME he is from the receptionist, lol.  It’s really nice to feel so wanted.  We were greeted with “It’s my FAVORITE family!” as Monkey stopped at the reception desk to help himself to some Purelle.  

The other really cool thing about the NP?  She had READ his charts…all the notes from every visit we’ve had, including the ER trip two weeks ago.  I can’t even tell you how nice it felt to walk in and not be starting from scratch.  I know you folks understand 🙂

She gave us some great tips, wrote a nice letter to the school so we can get them onboard with our plan and advised us to give him Benefiber once a day to try to control the consistency of his movements, that’s the first challenge we need to face.  She also mentioned that typically its the bowel movements that are easiest to train for, which really, fine by me.  I don’t mind a wet diaper, I can handle those as long as needed but the other, yeah, I’d like to be done there.  We go back in 8-10 weeks for a re-evaluation and in the meantime we get to chart.  We love to chart around here…any excuse to use Excel!

*It is most definitely NOT a fine day!  It’s cold and rainy and after a week of sun and temperatures in the 70’s and 80’s it’s NOT FUNNY.  Wah!  I want summer!

Homeschooling kids with FX?

Duhdee and I are considering a major life change.  In one of my long winded posts below I discussed the changes that we’re making in our lives and mentioned that one of our long term goals (for when Monkey is grown) is to run a farm/B&B.  We’re now re-thinking this.  We’re trying to decide if we should wait, if there is any real benefit in waiting, to Monkey or to us.

If we move, we’ll obviously be moving to a rural area.  We’re considering Maine, Vermont and New Hampshire with Maine being our first preference but it will ultimately be determined by what we can find.  A rural area is not going to offer the benefits that we enjoy here in Cambridge.  The school system here is not perfect, by a long shot, but it has a LOT of resources that small school systems can only dream of.   But how important is that ultimately?  We also have easy access to the Fragile X clinic at Children’s Hospital and now that Dr. Mike is opening his practice, we’d have easy access to him as well but we can always drive here if needed, we’d be moving away but not to the moon!

I’m not sure that moving would require us to homeschool.  I’m willing to try to have him in school but if the school can’t provide him with the tools he needs to succeed that we’d have homeschooling as an additional option.  I am actually very open to homeschooling because it is my (very strong) opinion that Monkey learns best when he’s most comfortable and he is most comfortable at home with us but I’m not aware of anyone who does homeschool their special needs kid.

If we were to make this change he would have two parents at home full time.  He would be gaining real life skills in running a business, growing food and living in the real world.   He would have space to run and play.  He wouldn’t in all likelihood have easy access to therapists though I might be surprised at what I find.

So how much should this factor in our decision?  I’m looking for all opinions.  Feel free to tell me I’m an absolutely selfish LOON to even consider taking him to a farm 🙂

Managing Expectations.

One of the most difficult aspects of Fragile X for Duhdee and I is managing our expectations when we are planning activities with Monkey. It may be that we’re excessively childish, as I sit here I’m listening to Duhdee scold one of our fish for disturbing a plant in the tank so that seems rather likely, but I think we’re actually fairly typical first time parents. There are so many things we want to experience with Monkey and we get rather excited about them and sometimes that excitement means we get carried away.

Every summer we take a family vacation in the mountains of Maine with my family. They have a second home there and we enjoy spending a couple weeks fishing, riding the quads, shopping at yard sales and just generally relaxing with my parents and younger sister. This past summer we decided to take 3 days and drive across the border into New Hampshire to visit one of my favorite places as a child, Storyland. We had learned that if you buy tickets after 3 you are given free tickets to use any other day that season so we showed up at 3:10 intending to get our free tickets and spend the final 3 hours of the day playing.

This is a classic example of how we let ourselves get carried away with our excitement. We entered the park and had Monkey on his first ride within 15 minutes. It was a roller coaster. Now, pick up your jaws. We fully recognize the error of our ways but at the time it really did seem like a good idea. And, in our defense, it was a really scaled down roller coaster.

Anyway, a quick ride on the Polar Coaster, followed by a quick ride on the Cuckoo Clockenspiel resulted in a totally shut down Monkey. The picture that Duhdee took of Monkey and I on the Clockenspiel is painful to see. You see me, grinning like a fool (who is determined to have FUN DAMMIT), and you see Monkey on my lap. You can tell just by looking at his eyes that he’s gone. It’s just awful. I look at that picture and want to slap myself. Monkey recovered himself just enough to scream and cry bloody murder until we finally dragged ourselves out of the park, defeated, depressed, and ready to quit. We agreed that Storyland was a very bad idea and we had every intention of trashing those free tickets.

The next day we had plans at another area attraction. Remind me to tell you sometime about what a HORRIBLE idea it is for a mom who is afraid of heights to take her just turned 3 year old child with FX on a 60 minute round trip ski lift ride. Oh, wait, sane people don’t need anyone to tell them that that is an exceedingly bad idea. Never mind.

Anyway, during the next day I spent a lot of time pondering the mistakes we had made at Storyland. Duhdee and I had agreed that we weren’t going back but I really thought it could be fun for Monkey if we approached it right. I finally told Duhdee that I wanted to go back. He thought I was crazy but he’s a good sport and decided to let me get my way.

The next day, after we were completely packed and ready to leave town, we stopped at Storyland. We could stay for as long or as little as he wanted. We decided that we’d go in the park and just walk around. Even if all we did was take ONE walk around the park we were going to be OK with that. After we’d been walking for a while we came upon the Carousel. We knew from experience that Monkey would like this so we got on and stayed for 6 rides! It was the perfect introduction for him. After we left that area we found a play structure with stairs and slides. Monkey spent a ½ hour playing and decompressing from the carousel. We then continued on and alternated a low key ride with an even lower key activity and we all had a great time. We spent several hours in the park that day and didn’t for a minute regret going back.

I wish with all my heart that I had the sort of “common sense” that would have told me that first day that we were approaching this all wrong but I seem to need to fail (badly) in order to learn the error of my ways. I’m so grateful that Monkey is so resilient and that he continues to love and trust me even though I clearly don’t always get it right.

He’s a sweetie wrapped in sweetness dipped in…

sweet sauce.

Seriously, I just have the best kid ever*.  This week is school vacation week and he is at his happiest and most relaxed.  Sure there is the whining each night when I get home but that’s only because he has spent the whole day missing me and he’s, you know, hungry.

He and I have come up with a few fun games lately.  One of his favorites is the “Yuck!” game.  He will do something gross, like play in dirt or shove bubbles into his mouth and look at me and say “Yuck!”  Then he watches me expectantly until I too say “Yuck!” and he dissolves into giggles. 

Then there is the game where I lay on the bed and he jumps on my belly saying “Ugh!” Which is a pretty close approximation of the sound I make when he jumps on my belly which in turn makes him dissolve into giggles.

Then there is this OTHER game where I lay, on my back, on the bed and he lays on top of me so we are cheek to cheek and he tells me “Roll!” and I roll over and try not to crush him.  Which makes him dissolve into giggles.

Oh and now that he’s mastered his body parts we spend time each night playing “Head, Shoulders, Knees and Toes” while we lay, on our backs, on the bed.  He plays along for the first three lines but on the final “Head, Shoulders, Knees and Toes, Knees and Toes” I am expected to sing it really super fast which makes him…..oh, yes, dissolve into giggles.

Lord, I just love it when he dissolves into giggles!

*OK, fine, your kids are probably the best kids ever too 😉

Weekend Roundup

We had a very nice, low-key weekend. Monkey is still under the weather but fortunately he’s just struggling with a runny nose and annoying cough rather than that nasty croupy cough.

We took nice long walks around the local reservoir both Saturday and Sunday. We really enjoy having this great place to go! There are always tons of dogs, which excites Monkey to no end. Yesterday, he spent nearly the entire walk with his arm extended as he signed “Come Here” and said “’Mere.” Normally he does this only when he can see a dog but yesterday he was calling for the next dog before it was even in sight, lol. Duhdee and I enjoy the nice brisk walk we can get in while Monkey is riding in the stroller. We’re determined to lose the last lingering extra lbs. we’re both carrying.

Other than walking we spent quite a lot of time in the yard. Monkey ran around and amused himself by picking up mulch and throwing it into the bushes so he could tell me “Yuck!” which I then had to repeat so he could laugh at how FUNNY we are. I planted some Cascadia Snap Dragons in the window box we hang from the front porch. If all goes to plan we’ll take the extra seedlings and plant them in the hanging basket above as well. Here’s hoping for germination! I also finally took the strawberry plants from the refrigerator and planted them in the hanging bags. These will be hanging off the back deck where they’ll get LOTS of sun. I can’t wait for strawberries!

While I was planting, Duhdee was tearing out bushes. He managed to get 3 of the 4 shrubs that are in our future garden out but not without totally dismantling them. We had hoped to send the whole bushes up to New Hampshire where they could be replanted but they were not coming out of the ground in one piece. The biggest roots were all running under the fence into the neighbor’s yard so there was just nothing we could do to salvage them. It’s a shame but they were not in the best of shape anyway so I don’t feel too badly.

The seeds that we started a while back have started to break through too. They’re still in their mini-greenhouse in the basement. So far all 4 varieties of tomatoes, the cucumbers, the basil and the corn have all come through. Some are doing better than others (only 2 of 7 corn plants are up) but we’re making progress. The parsley and the peppers are the only holdouts. I guess parsley takes longer to get started but I’m a bit worried about those peppers! I’d also like a few more stalks of corn to show up.

Still no progress regarding the chicken. Duhdee seems determined to make me nag him on this one for a while. *sigh* He should know better by now. He’s seen my dad wear down my mom enough times to know how this will end!

Another distant memory…

This was written in 2006, about 3 weeks post diagnosis.


“A journey of a thousand miles begins with a single step.” – Confucius

Though, sometimes, it begins with a phone call.

Last week we received a call that freed us from weeks of worries but the call was premature. The receptionist at the pediatrician’s office calling to let us know that the test came back clear. Thank god. Monkey had been spared. Then the next day, at a routine office visit, his fill-in pediatrician casually let it slip. There were two tests done, not one. The first was clear…the second was not.

So here we are. Umma and Duhdee, parents of a beautiful, funny, bright toddler who happens to have Fragile X.

The first days and nights were a blur of terror and anxiety. We only knew what we had learned on the internet. Which is to say, just enough to terrify the bravest parent. Our normal pediatrician was on vacation but she “might” want to meet with us later. Get an evaluation for him, we were told. Here are 3 names, go ahead and call them. The actual test results are not important, they will tell us nothing. There is no way to predict his outcome. He may be severely impaired mentally, behaviorally, physically or he may not but boys are more affected than girls. Avoid the internet, it is not your friend. Any questions?

How can I respond? The tears have started, my throat is so constricted I can barely get a breath out, never mind actual words. “The internet may not be my friend, but neither are you, you cold hearted bitch,” is what I think. “Thank you,” is what passes over my lips. After the phone is back in the cradle I sit and breath and will the tears to stop flowing. I’m at work, I cannot fall apart. A minute passes, then two. The tears have stopped but I can feel them burning in my belly. I want to throw up. I want to scream. Instead I sit and continue to breath the same deep breaths I practiced in anticipation of his arrival almost two years earlier.

I meet roadblocks at every turn. Everyone agrees it is critical that we move aggressively and get his therapies started to give him the best shot of reaching his full potential. They even agree that an evaluation is key to figuring out where we stand and how to proceed. They also agree that the wait list for such evaluations are long. Very, very long. 4 months if we are lucky, most likely 6. Everyone agrees that a pediatrician who specializes in Fragile X is needed but none are taking new patients. I spend hours researching and calling only to be met with “I’m sorry” and “Unfortunately.” Devastation, frustration, helplessness…how much more can I take? I’m only a few days into my journey and I want to stop already but Monkey needs and deserves better.

Desperation leads me back to the internet. I do the searches I’m not supposed to do. I find a helpful website that does not terrify me. The amount of information is overwhelming but it’s there! I send out a cry for help. I need a starting point, a new pediatrician. Within a few minutes I’m tossed a lifeline. A calm voice at the end of the line. I’m so disturbed that at first it doesn’t register. He saw my e-mail and he’s calling to help. “What can I do?” He’s so sincere but I don’t know where to begin. It’s all too much. He guides the conversation, asking the questions he needs answers to in order to help me. The more I talk the easier it becomes. The knot in the pit of my stomach relaxes.

He knows what I’m dealing with. He knows people near me that can help. He talks me through the basic information and takes my contact information. Less than an hour later, we get a second call. This one is from a father who also has a son with Fragile X. He’s a doctor. He knows a clinic. His wife is a pediatrician. She knows pediatricians who can help.

The reality is starting to set in for Duhdee. This last week has felt so nightmarish, we keep hoping we’ll wake up and everything will be OK again. Monkey is so adorable and funny and he’s learning so many new things. He started signing “baby” and climbing stairs on his own. How can he be impaired? This has got to be some sort of cruel joke. But talking with people about it makes it real. The fear begins to swallow us again.

The next morning the pediatrician, that we’re pretty sure we’re going to fire, suggests we find another pediatrician. She doesn’t know anything about this. I’m not willing to let her off the hook that easily. We are going to need referrals and records. She will have to wait until we have an evaluation set up somewhere.

When I get to work the there is a follow-up e-mail from the father who called the night before. I thank him for his time, his efforts. He responds with a miracle. I doubt he would describe it as such but for us it was a miracle. The clinic he mentioned has an opening for next month. Instead of a 4-6 month wait we can be seen in just over 3 weeks. But we need to call quickly. It’s done. The clinic is surprised by how quickly I respond and how quickly I resolve the required registration process. I manage a small laugh, the first in a week. I am motivated, I agree.

Then another piece of good news. Monkey, Duhdee and his occupational therapist have gone to the park. She is impressed that he walked the entire distance on his own with only a few brief breaks. Most 3 year olds couldn’t do that. We’re surprised and pleased. He actually walks much farther. He can walk almost the entire 2 mile route we take the dogs on each night. Then Monkey demonstrates his new stair climbing ability. Another positive reaction from the OT. And then the coup de grace, he uses a piece of sidewalk chalk to make a mark. We’ve been trying for 7 months to get him to attempt this with crayons and he finally succeeded. Suddenly we’re reminded that while the big picture may be terrifying and send us to the depths of despair, the little triumphs resurrect us.

“A journey of a thousand miles begins with a single step.” – Confucius

Step on little man, we’re here with you cheering you on wherever this journey will take us.

Croup! Oh, joy.

Here is the short version, when I’m not so sleepy I’ll tell the whole story.

Last night Monkey woke up with a barky cough and was struggling to breathe. We tried steam and it didn’t work at all so we called his pediatrician’s office. She advised us to try cold air. If that didn’t work we had to take him to the ER at Children’s Hospital. That’s where we ended up last night at 11:40. He has a severe case and needed oral steroids because his oxygen levels were a bit off. We got home around 3 AM, he was in bed by 3:30, he was up at 7. Duhdee is sleeping in, I’ll sleep later when he wakes up. Ugh.

Oh, and, the best news? Night 2, and sometimes 3, are typically worse. “Hopefully” the steroids help but there’s a chance we’ll be back there tonight. Today we need to go see his pediatrician too. Duhdee can do that, lol.

Lucky for you all I had another FX Memory lined up, I’ll post that in a while.