I wish I had amazing images of the gorgeous mountain scenery and maybe a few shots of us posing . . . → Read More: Oh, I needed this!]]> The ladies were trying to get me to blog last night but I was too busy nearly peeing my pants. This is just an inevitable occurrence when you take four moms and introduce much hilarity.

I wish I had amazing images of the gorgeous mountain scenery and maybe a few shots of us posing like grown-ass adults in front of historically significant monuments but I feel that it is my duty to let you know that you will, very likely, never see such a thing here. Sorry. It turns out that when you take THESE four moms and put them in a beautiful cabin in the mountains, all you get are pornographic snowmen and attempts to stuff people into suitcases. Who knew that getting away from it all would bring out our inner frat boy?

On the serious side, we have all cried too. How can there be no tears when you get four moms of special needs kids together to share their stories and support each other? What is so amazing about it though is that they’ve all been tears of gratitude. These women understand me on a level that is bone deep. They GET IT, they have walked in my shoes. Sometimes they’ve done it better than me and sometimes worse. We can share the stories that we carry in the dark recesses of our minds and feel…understood and accepted. It turns out that those stories lose a little bit of their power every time you drag them out into the open…every time you give someone the opportunity to validate how awful it was and let them lift a bit of that burden off your shoulders.

I think it’s important to remember that no one of us is free of the emotional turmoil that comes gratis on this journey. No one of us has all the answers. No one of us has always handled everything perfectly. We are all the perfectly imperfect parents of some amazing kids. Whatever we do, whatever struggles we power through, whatever obstacles we seem to leap over in a single bound…is for these kids we love with every fiber of our beings.

We are all members of an exclusive sorority. A sorority of fear, grief, guilt, failure (both big and small), success (this only comes in epicly huge with our kids), joy, gratitude, awe, inspiration and love. I so needed to be here for this…

Cwap, that got way deeper than I intended.

Oh, look…I DO have a picture of one of the gorgeous mountains surrounding us!

I took a snowball to the back of the skull for this one, you’re welcome.

Monkey had yet another amazing day yesterday.  The three of us stayed . . . → Read More: Amazing.]]> Amazing is currently the most overused word in our house.  We’ve used it about Monkey’s behavior at family gatherings, his newly emerging participation at school and his always creative communication strategies.  He really just seems to be on a roll these days.

Monkey had yet another amazing day yesterday.  The three of us stayed home all day and Great Grampy joined us for the afternoon.  Monkey was still rather shy at the beginning but he did fairly well.  He mostly helped Duhdee cook while Great Grampy and I sat and chatted about his life growing up and all the different places he lived and worked.

After dinner, however, there was an amazing transformation.  Monkey brought back a piece of his Thomas Trackmaster train track sets.  Duhdee was sitting next to Great Grampy and we thought Monkey was taking the track to him but Monkey made it very clear he wanted Great Grampy to have it.  He brought back a few more pieces and continued to hand them to Great Grampy.   We moved down onto the floor and Great Grampy helped Monkey set up a track.  Monkey then began handing the Thomas engine and various cars to Great Grampy to assemble.  It was amazing!  The child who normally tries to distract Great Grampy from looking at him was sitting only inches away from him and making eye contact and being very demanding, actually.  It totally made our day and Great Grampy looked pretty pleased himself.

At Monkey’s 12 month check-up his pediatrician was a bit concerned about his lack of babbling.  She asked us to set up another check-up for 15 months so that we could gauge his progress.  She reassured us and told us not to . . . → Read More: Here enters the cavalry…]]> This is a Fragile X Memory from before our Fragile X diagnosis.

At Monkey’s 12 month check-up his pediatrician was a bit concerned about his lack of babbling.  She asked us to set up another check-up for 15 months so that we could gauge his progress.  She reassured us and told us not to worry.  When his 15 month appointment arrived he had made no progress on his speech and at that point she gave us a referral to our local Early Intervention providers.

There is sometimes a long wait for an EI evaluation but we were seen fairly quickly.  The two woman who did the screening were a developmental specialist and a physical therapist.  We were very surprised to learn that he had global delays.  His speech delay was the most pronounced but he was lagging far enough behind in gross motor and fine motor development to qualify for services there as well.

We quickly set up a schedule of services and soon (what felt like) an army of young woman were traipsing in and out of the house 5 days a week while I was at work.  The developmental specialist and the physical therapist who had performed the evaluation became his case manager and his physical therapist, respectively.  An occupational therapist and a speech therapist rounded out the team.  They were all very nice and Duhdee, in particular, was appreciative of their efforts.  Monkey and I were not that happy.

Monkey, with his stranger aversion, was probably the most unhappy with this turn of events.  Suddenly there were strange people in and out of our house and they all wanted him to INTERACT.  The horror.  He spent a lot of time avoiding but we were so fortunate to have a very stable team.  Over the  20 months that we received services his team remained nearly intact.  He was able to develop bonds with each of his providers over time.

My reaction to all this is interesting to me, in hindsight.  I was not grateful for the help.  I took every comment or suggestion as an indirect insult.  I cannot tell you how many times I thought “Do they think I’m stupid?  Maybe they think we keep him in a box when they aren’t around!”  I probably even said those things outloud to Duhdee a few times.  Prior to receiving his diagnosis I was convinced that we were doing something wrong, Monkey was fine, we were just idiots.  We had no business having a child if we couldn’t even teach him to talk, for goodness sake.  So all these feelings of being a failure as a mom manifested in a simmering rage at the lovely folks who were helping us and helping him.

I’m not proud of how I felt about the situation, I think (I HOPE) I was more friendly to them than I felt at times.  If I was not, I hope they understood that it was not them that I was angry with.  I was feeling like a failure, I felt helpless and that came out in anger.  Ultimately, I did come to appreciate his team.  His developmental specialist, in particular, became very much a part of our inner circle.

After our diagnosis she accompanied us to a myriad of assessments, she spoke the language of the therapists and we felt so better to have her knowledge and support.  She also accompanied us to a Coffee Talk presentation and brainstormed with us as to how we could use this new knowledge to improve how the team worked with Monkey.  She went so far above and beyond what we could have ever hoped for.  She even arranged for her best friend to babysit for us on a few occaisions (she couldn’t do it b/c he was a client.)  After he turned 3 she babysat for us just to have a chance to see Monkey, she loves him so much.

At this point I think his entire team has left EI which is a terrible shame.  Low pay, too much work and no appreciation from management took their toll and these amazing women have moved on.  I know they will go on to use their training and skills to help other people, I’m just sad for all the little kids who won’t get to have the experience Monkey had.

We’ve been working very . . . → Read More: For today’s FX Memory we’re going wayyyyy back to…]]> June 17 and 18, 2008.  Ha.  Read the posts, these are just about the worst days we’ve had since the diagnosis.  Our stress level is at the very highest.  We’re worried, angry and feeling isolated.  But there was an awesome moment in there, that’s what I’m going to share here.

We’ve been working very hard to potty train Monkey for the last few weeks.  He’s not a big fan.  As often as not, he will tell us “No” and/or sign “all done” when we mention trying to use the potty.  It’s not a lot of fun for any of us.  It’s not awful, just not great either.  Our results are pretty dismal, we get him to successfully pee in the potty 1 or 2 times a day at most.  He’s still not telling us when he has to pee, he’s not telling us when his diaper is dirty (pee or BM), his BMs are still loose (despite Benefiber)…ugh.  There’s just not much encouraging us but we keep plugging along.

Yesterday morning Monkey came to my side of the bed and touched me to wake me up.  As soon as I opened my eyes he pointed at his bum and said “Yuck” and then pointed at the front of his diaper and said “Yuck” again.  Sure enough, he had pee’d and had a BM!  WOO HOO!  That’s the very first time he’s shown that awareness and/or communicated it to us.   The best part?  It was 7:30 and I’d overslept so Duhdee had to change the diaper while I showered for work.  Really, it can’t get any better than that

I am not sure this really was round two for me.  I had struggled with depression for so long before I hit bottom and needed treatment in my mid-20′s but it was not a constant feeling of depression.  I . . . → Read More: Depression round…two?]]> Posts about my previous treatment for depression can be found here: Part 1 and Part 2.

I am not sure this really was round two for me.  I had struggled with depression for so long before I hit bottom and needed treatment in my mid-20′s but it was not a constant feeling of depression.  I had times where I functioned very well and other times where I could barely get through the day.

My entire junior year of college I had isolated myself.  I moved to a new house on campus where I didn’t know anyone and when I returned for my senior year NO ONE knew that I’d even lived there the year before.  I was a ghost, showering during off times, entering and leaving through the service door, studying and eating meals by myself in my room when I wasn’t in class.  I had been fine my sophmore year and I was fine my senior year so obviously this came in waves.  I really have no idea how many times before that I should have sought help and didn’t.  So round two is really just a marker for the second time I realized I had no option but to seek treatment.

No one will be shocked to learn that it coincided with Monkey’s diagnosis, I’m sure.  I’ve written before about how badly the diagnosis was delivered and how much we struggled in the beginning because we had no reliable information or support.  In the first weeks after we learned Monkey had Fragile X, I stopped sleeping.  I spent night after night in bed tossing and turning until I couldn’t stand it, then I would get up and go online to search endlessly.

I was feeling guilt, hopelessness, isolation and anger.  I wanted answers no one could give me.  I wanted help no one would offer me.  I wanted to run away but I love Monkey too fiercely to contemplate leaving him behind and, even if I did do such a thing, Fragile X was with me forever now regardless.  I thought it would be best for both of us to just cease to exist.  I never thought about harming my Monkey, I never would.  I just thought it wouldn’t be the worst thing in the world if we could be together and free of all the fear and struggles that lay ahead.

That right there…it’s my crazy* talking.  This time I saw it for what it was and I was sitting in my physician’s office the next day.  I tried to explain what was happening, I mentioned Fragile X which she admitted she knew nothing about, but ultimately what I did was cry.  It was clear I was out of control of my emotions, the lack of sleep, the shock and fear I was feeling, my history of depression all added up to me needing more than she could give me.

She referred me to a therapist in her practice and I set up 3 visits for the first week.  That, is a lot of therapy.  I needed something to help me even out my emotions though and drug therapy takes time.  This was my second round of therapy and it was an unmitigated disaster.

The therapist had not ever heard of Fragile X Syndrome and did not take the time to do any research.  I found myself in her office on that first visit explaining what it is and how it’s passed on and I BARELY understood this myself at that time.  As I sat there my tears dried up and I started to feel annoyed and then angry.  I left, thinking I wouldn’t go back but outside of the office all the emotions that had convinced me to seek help came back.  I went back for a 2nd and 3rd visit, repeating all the same information and then she did something I still have trouble believing.

She suggested that, since I was so surprised at the diagnosis and had never suspected anything that serious was wrong with Monkey, maybe he didn’t have Fragile X at all!  Maybe they were wrong.  I was so stunned, I tried to convince her that it wasn’t a misdiagnosis but she persisted.  I left.

The following week I only had 1 session scheduled.  When I returned for that visit she started in again about the fact that he might not have it at all.  I felt totally disregarded and disrespected.  She obviously hadn’t taken any time to check into Fragile X and it seemed she never would.  Furthermore, she decided that I wasn’t actually depressed, I was just suffering from insomnia so she prescribed a sleeping pill and nothing further.

I was, again, stunned.  She had my medical records.  She knew I suffered from depression, she knew that I had been suicidal in the past and that I had used sleeping pills inappropriately (to say the least) in the past and here she offers to hand me a bottle of them and not treat my depression.  The medical group that I visit has a staff geneticist (who I later saw) who could have told her, had she asked, that with my history I should be on anti-depressants now and probably forever.  But she didn’t ask.

When I left her office that day I took the prescription and did not make another appointment.  I filled the prescription on my way home but, after further consideration, I decided it probably wasn’t in my best interests to have it around and I disposed of it.  She never once called to follow up.  A (reportedly) depressed person walks out of your office with a prescription that she could use to kill herself and never comes back and you do what now?  Yes, that’s right, just forget about it…that seems logical, right?

Fortunately for me pieces started falling into place for us after that visit.  We found people at the National Fragile X Foundation to listen and advise, we were given contact information of family who could help, we found a geneticist who could explain the situation and what it meant to us, we found a clinic to evaluate Monkey.

I was able to walk away this time without the added support of therapy and I threw myself into finding what we needed to help Monkey.  Having this to focus on allowed me to cope.

This isn’t to say that I shouldn’t still be on anti-depressants.  I should.  Duhdee has, at times, been very worried about me.  He’s pushed me (gently) to go back but I was so discouraged by that last attempt and I’m so discouraged on an ongoing basis by the lack of knowledge in the medical community about Fragile X that I just can’t bear to.  When I most need therapy, I simply lack the strength of will to get it.  I lack the will to educate and advocate for myself the way I do for Monkey.  I guess it’s asking for too much to find someone who will go the extra step to educate themselves and figure out how to help me, they all seem to want me to do all the work.  I just don’t have the energy for it.

*Please don’t be offended, it’s my (inappropriate) sense of humor.  I know this is a very serious disease but self-deprecating humor is my trademark.  I can call myself crazy.  I’d never call anyone else that though.

After my intake evaluation it was a relief to finally be told that they wanted to admit me. My parents were totally shell shocked by how badly I was doing, I am . . . → Read More: A migraine saved my life (part 2)]]> (This is an FX Memory, from before I knew I was a carrier, read Part one here: A migraine saved my life.)

After my intake evaluation it was a relief to finally be told that they wanted to admit me. My parents were totally shell shocked by how badly I was doing, I am very good at hiding this sort of thing and I come by it honestly. At one point I remember justifying why I had not been able to reach out for help by relating this story.

My grandfather has broken his leg twice in his lifetime. The second time he broke it he walked around on it for 3 days before he decided to see a doctor, can you imagine? Anyway, the doctor put a cast on his leg that ended just above his knee. My grandfather wore the cast for two DAYS and then cut it off himself. He said that he’d walked on it for 3 days without a cast and he didn’t see any reason why he couldn’t continue to do so. A few years later my mother broke a bone in her foot. She hobbled around for 3 days before she went to see a doctor. When she told her father the story his reply was “That’s my girl!”

This is just one example of how my family deals with pain and this lesson was passed along in many other ways as well. It was really ingrained into me from an early age that we should all just buck up. It’s not to say that my family is cold, we’re just your average Yankees. Stoicism is a virtue, until it almost kills you and then everyone will tell you what a dolt you were to hide your pain in the first place. They’ll still proudly tell the story of how you got along up until that point though!

My first few days in the hospital were remarkably unhelpful. I was tired and I was cranky, to put it mildly. Spending days in a locked ward with mandatory group therapy did not agree with me and I saw no reason to hide that fact. I refused to participate in therapy and I still wasn’t eating since I still didn’t think I deserved to eat. I woke up just around 11 PM on my 3rd night feeling very dizzy. My heart rate was erratic. I tried to get out the door to get help and I collapsed. I hit my chin on the door handle, I still have the scar.

I’m not sure how long I was there but it couldn’t have been very long, they did room checks every 10-15 minutes and they would have found me blocking the door, but it felt like a lifetime. Eventually, I was able to stand upright and get the door open. I started down the long hall to the nurses station, I had to lean against the wall to walk. Then everything went black. I’ve passed out before, from stage fright and fevers and it had always been a gradual event but not this time. This time it was just lights out.

The nurses were alerted to my problem when they heard my head hit the floor from some 30 feet away. I only remember bits and pieces of what happened. I heard one of the nurses give my blood pressure reading and it was really low (something over 40), I heard another one say “Girly, you’ve got to EAT!” and that’s about all I remember until they put the IV in my arm in the ER. That woke me up but good. I had quite a long time to sit and listen to the nurses fuss at me. They got into a lot of trouble over all this too, I still feel badly about that.

After I went back to the unit they gave me one more day to sleep and be grouchy and then they started to really push me. They turned me into a pet project of sorts. There are lots of people who cycle in and out of the psych unit there and I’m sure it’s the same at every hospital. There are some people who for, whatever reason, can’t come back from their mental illness and they didn’t want to see me become one of them. There was no need of it in my particular case, it would have been pure stubbornness on my part if I didn’t get better. Medications and therapy could make me better but I had to at least make some effort.

Ultimately, I was able to take advantage of the tools they were offering me. I was diagnosed with Major Depression – Single Episode. With drug therapy and counseling everyone thought I’d stabilize and be able to come off the medications completely. When I was discharged, after a week of inpatient treatment and six weeks of outpatient treatment I felt healed. I continued private therapy for 6 more months and then weaned off my medication.
I did great from that point until my son was diagnosed with Fragile X years later.

To be continued…

How did it get so late so soon? It’s night before its afternoon. December is here before its June. My goodness how the time has flewn. How did it get so late so soon? -Dr. Seuss

Photo courtesy of Megan George. Happy 4th birthday little . . . → Read More: Our regularly scheduled FX Memory is interrupted…]]> by Monkey’s BIRTHDAY!

How did it get so late so soon?
It’s night before its afternoon.
December is here before its June.
My goodness how the time has flewn.
How did it get so late so soon?
-Dr. Seuss

Photo courtesy of Megan George.

Happy 4th birthday little man.

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 . . . → Read More: 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.