WOOOO HOOOOOO!!!!
For the first time in SEVEN long months….
MONKEY WALKED IN TO HIS CLASSROOM!!!!
I’m so dang excited that I’m blogging from the T. I just couldn’t wait!
****Edited to add****
Duhdee, after wiping away the tears of joy, went home and e-mailed the lovely, life saving Dr. G to inform her of our triumph and we received this response (names have been changed, duh):
HOORAY!!!! That is wonderful! Just one example of the many things Monkey will accomplish. Duhdee, you Umma and Monkey have done a fantastic job working together to help Monkey accomplish a goal. Keep up the good work!! Relish the victory this weekend!
She also cc’d the entire team at Children’s Hospital so we also received this from the program coordinator:
Congratulations! That is wonderful news! And a nice early Mother’s Day present too!
We are so lucky to have such awesome and supportive people cheering us all on.
If you want to read the background story try here:
https://www.basicallyfx.com/?p=6
and here:
A migraine saved my life.
(This is an FX Memory, from before I knew I was a carrier.)
I’ve struggled with depression since my teens, possibly longer but it was in my teens that I first recognized it for what it was. For ten years I muddled along and then I simply could not take one more step. I had hit a wall. I could not see any way around or over it. I stopped eating and sleeping and I started drinking heavily. I sat there, at the base of that wall, and waited. I had quit my job and distanced myself from my friends and family so there was nothing to do but wait.
One day, I felt the tell tale prickles of a migraine as it wormed it’s way into my head. I took Excedrine and washed it down with Jack Daniels and continued to wait. The migraine hit, full strength. After 2 days with no relief from the pain and no sleep, sleep began to seem like the cure-all. As if one can simply sleep off a migraine and full blown depression. I finally decided to give sleep a helping hand and took a full bottle of OTC sleep aids. It didn’t work so the next morning I called my doctor sobbing.
I was an emotional wreck when I arrived at her office. She gave me an injection to treat the migraine since I did not want to go to the hospital for pain management if I could avoid it. After about 30 minutes in a darkened exam room the pain was gone so completely that it was difficult to imagine I had ever felt it. What hadn’t disappeared, however, were the tears and the feeling of hopelessness.
My doctor very gently began probing for answers. She told me that she was concerned that I didn’t seem to be feeling better even though the source of my complaint was gone. She wanted to know if I had ever considered suicide and I told her that I had and added “Everyone does at some point, don’t they?” She told me no and I was shocked. I had spent so many years just casually considering ending my life that I thought it was normal. I thought it was normal to think “I could just drive under that semi” when I passed a truck on the highway or “I could just drive into that bridge abutment.”
She asked me if I had a plan and I said “No!” in a rather self-righteous way, I might add. She asked me if I had thought about how I would do it and I immediately told her I would take pills. She asked if I had access to them and I said that I did. She let me know that this was a plan.
She asked me if I had ever taken lots of pills and I had to tell her that I had, in fact, done so the night before. Holy crap. I tried to KILL myself?? It seems so hard to believe, from where I am today, but I really had no idea how badly I was doing at that point. I did not realize how close I had come to ending my life.
She then told me she didn’t feel safe letting me go home and asked me to go to the local hospital to be evaluated. As scared as I was of what I had done, I couldn’t agree to it. She insisted that I call my parents and tell them what was happening. She made me promise them that I would not hurt myself if I left her office. I did this but it wasn’t enough for my parents. They immediately drove to my apartment and brought me to the emergency room of the local hospital. They were so scared, I didn’t want to say no.
The evaluation at the local ER was pure misery. After an hour under their microscope I had no defenses left, I was shaking and crying uncontrollably. I felt as though every part of me had been laid out for the whole world to see and judge. I felt as though I could not trust myself to discern the truth of my own emotions. I can’t even identify today what emotions I was feeling. I think I was feeling every emotion, all at the same time. After three months of self-medicating and trying not to feel any emotions, it was pure hell.
This is getting really long. I’ll save the rest for next week. I don’t really have to say that my personal struggle is directly related to FX, right? Right.
The cuteness is almost unbearable.
Monkey developed a unique way of “tickling” me some time ago. He would simply place his hand on me and grin, I was expected to shriek and laugh. It was a great game for the two of us to play but I realized no one else was going to understand what he was doing or what he wanted in return.
A couple weeks ago I decided we were going to teach him how to really tickle. I demonstrated prime tickling techniques on Duhdee and expected that Monkey would pick it up in time. WRONG! He immediately switched to the new method and now he can’t get enough.
He will run up to me try to say “Tickle, tickle” and wiggle his little fingers on me. Today he instituted he OWN approach. The sneak tickle attack! He came up to me and asked for a hug…as soon as his little arms wrapped around my neck though he started saying “tickle, tickle” and tickling my back.
This is just one of the many ways we’re noticing lately that he is taking the initiative, seeking us out and adapting old games in new unexpected ways. I’m loving (almost) four so far!
Curlz.
I won’t let Duhdee cut his hair short, it would be a travesty to lose these.
Stumped.
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 🙂