The sun came out on Saturday and Duhdee promptly installed the AC units, lol. It was in the 80’s on Saturday, it was in the mid-90’s yesterday (at home but we were in Maine along the coast so it was beautiful high 70’s with a breeze) and it’s in the 90’s again today! Tomorrow looks like more of the same. I am not complaining, the sun improves my mood so drastically…everyone else is miserable but I am very, very happy.
It’s raining, it’s boring,
I wish I was snoring. Blah! 3rd rainy day in a row, what is up with that? I really, really need to see the sun soon!
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.
Something funny is going on here!
Monkey has never needed a lot of sleep. He dropped from two naps/day to one at 10 months, he stopped napping entirely around 18 months. Duhdee protested at both junctures and tried REALLY hard to maintain the naps but you can’t make someone sleep (well, except with melatonin but we save that for nighttime emergencies, lol.)
Sometimes, when he has had a very rough day (or night before) he will nap but it’s not with any regularity and, more often than not, he will stay up all day despite being exhausted and ill tempered.
So, can someone explain this to me please? Today, for the 3rd day in the last week, Monkey grabbed his blanky, marched into our bedroom and put himself down for a nap. Yesterday, he watched a bit of TV before he decided to turn it off for a nap. Today, he just went straight for the nap. No one is complaining, but I am just so confused!
Interested in homeschooling?
For some time now I’ve been tossing around the idea that we should homeschool Monkey. I feel very strongly that he learns best from us. He has learned great things in pre-school from watching other kids but he also experiences a lot of anxiety at school.
We had horrendous transitions to school from late October until February and he was really struggling in the classroom. Despite the fact that we had written into his IEP the need for him to have a sensory diet, one was never put into place. They’ve simply relied on giving him access to his blankie (for comfort) and a chewy tube whenever they think of it and the teacher has periodically argued to remove even those supports because they make him “look different.” She’s been very adament that she wants him to look “normal” which is all well and good but not at the expense of his ability to cope in the classroom.
So, it’s been in the back of my mind that this would be a good thing for Monkey but I had never heard of anyone homeschooling kids with special needs before and I was, honestly, scared to even try it. Last week a message came across the fragile x mailing list that I subscribe to from a mom who does just that. Eventually someone mentioned that there is a yahoo group on this topic. It’s been around a while and is a bit quiet but I hope that the renewed interest in it will change that.
I encourage anyone who is homeschooling or wants to homeschool to join, the more voices the better. I actually think anyone could benefit from joining, I’m sure there are lots of things these folks do that we could use even if we continue with public school and supplement at home.
Alpacas!
We had a ton of fun visiting with the alpacas yesterday. Monkey started off calling them cats (anything fuzzy, regardless of size, is a cat until we convince him otherwise) which cracked everyone up. He really loved them, he was climbing on the stockade fencing and feeding them hay. I think he’d make a great farmer. Duhdee is not convinced.
“He’s looks so much like his Daddy!”
This has been a constant refrain since Monkey was born. It started the week he was born. My mother-in-law brought a copy of the picture taken of Duhdee in the hospital when she came for her first visit and it took my breath away. Monkey looked just like his dad, they could have been twins and the resemblence grows stronger every day.
I’m sometimes asked if I am really his mother (jokingly, of course) because he looks like his father’s clone. Duhdee takes great pride in his “Mini-me” and I can’t complain, they’re both very handsome. Sometimes, when he was a little lump of a newborn, I felt a twinge of jealousy that when I looked at my son I didn’t see any part of me reflected in his face. Don’t get me wrong, I think Monkey’s lucky that he got his Duhdee’s nose and OMG those eyelashes, but it made me a little sad to not be able to see at least a small part of me there. After Monkey’s diagnosis I had a few bitter thoughts of “Great, now I know what he got from me. My wonky gene, PERFECT!”
But as he gets older it’s becoming more and more clear that Monkey got a little something extra from me and I am so amused. Poor Duhdee is beside himself. He still takes solace in the fact that Monkey looks just like him but he’s struggling with the fact the Monkey takes after me personality-wise.
My in-laws mentioned last weekend that Duhdee hated to get dirty when he was a child. He refused to have anything to do with their garden. He was always washing his hands and keeping clean. Now just look at the poor guy. He’s got a son and wife who would be most happy on a farm with cows, pigs and chickens (especially cows!) At the Memorial Day cook-out I realized half way through that there were only two people there with no shoes on, can you guess who they were?
Duhdee would be perfectly content, I think, to stay where we are now and I would be OK with that too but I would be SO excited to have an even larger place to dig in the dirt, climb trees and watch MY mini-me give himself dirt showers while Duhdee rolls his eyes and bemoans the fact that Monkey needs another bath.
Until we find that perfect place though I’ll continue to cope by dragging Duhdee to agricultural fairs (cows!) and other types of farming fun. This weekend? Alpaca shearing! Duhdee can’t wait, I’m sure.
A confession and a funny story.
I hate milk. I have hated milk since my mom switched us from whole milk bought directly from the dairy across the street to grocery store milk. Blech. Duhdee doesn’t like it either, I’m not sure how far back his distaste for it goes but definitely since childhood.
I do recognize, however, that there are some benefits to drinking milk and we do want Monkey to drink it and, so, we lead by example. But we cheat. We use Nesquick (no high fructose corn syrup!) in strawberry (for Monkey and I) and chocolate (for Duhdee.) So that’s my confession. I bribe my child to drink milk by adding the least bad strawberry flavor I know of.
Now for the funny story. On Wednesday, Monkey was ready for dinner 15 minutes before dinner was ready for him. We explained that it was almost finished when he begged for croutons. We sternly told him he needed to WAIT when he continued to beg. Eventually, he seemed to accept what we were saying and he wandered off.
As Duhdee and I were chatting Monkey came back to the pantry and grabbed the two containers of Nesquick from the shelf and marched over to his stool. Since this is the last thing that we do before we put dinner on the table the message was pretty clear. He was ready for dinner to be under way. Duhdee and I snickered at his roundabout way of continuing his pre-dinner assault but ignored him. I even left the room.
Realizing that we weren’t yet convinced he was serious, Monkey stepped down from his stool, marched to the refrigerator and pulled out a FULL gallon of milk. Duhdee rescued the milk container before it crashed to the floor because there was no way Monkey could get it onto the counter by himself. We realized we had, yet again, been defeated by Monkey’s cuteness and persistence. I made the dang milk.
Too bad he still had to wait for dinner to finish cooking. It really was a pretty good plan.
The rest of the weekend…
On Sunday the three of us took a nice long walk around Fresh Pond Reservoir, it’s one of our favorite places to go. Monkey absolutely loves all the dogs we see on our walk. He tries calling every single one of them over as soon as he spots them. The constant “‘mere, ‘mere, ‘mere, ‘mere” becomes background noise to the long talks Duhdee and I have. I never thought I’d be one of those moms, tuning out their child, but I so am.
After our walk, Duhdee had to go grocery shopping so Monkey and I hung out. We live on the 2nd floor of a two family and we have a nice deck on the back of the house which Monkey just loves. I decided to clean up the deck a bit because the pollen has been out of control this spring and everything had a fine layer of pollen on it. Once the chairs were wiped down Monkey sat and watched me sweep the deck. I realized that I really don’t sweep very often, we pretty much just vacuum or Swiffer, so Monkey found sweeping to be very interesting. More than just interesting…he found it HILARIOUS. He sat on the porch for 15 minutes laughing the deepest belly laughs as he watched me. I’m glad he’s so easily (and cheaply!) amused.
Later in the afternoon Duhdee’s parents came for a visit. They’ve been making it a point lately to come and see Monkey on his own turf where he’s most comfortable and it’s REALLY paying off. He was quite a lot of fun during their visit. It used to be a major coup to get him to stay in the same room with his Grammy and Grampy but now he’ll sit at the table with us and eat like it’s nothing. He sat next to Grampy this time and after dinner he was showing off for them. He was full of giggles and jokes, it is so cool to see him open up with them. Now if I could just get MY family to come visit!
On Monday we had a neighborhood cookout. It started out with our house (including Great Grampy who lives downstairs) and the next two houses but ended up including quite a lot more people. We live in such a great neighborhood and we’re blessed to have some neighbors who’ve lived here for decades. It was a really nice multi-generational gathering. The youngest was 8 months old and the oldest was 80 something (honestly I’m not sure who the eldest was, I’ll have to ask Grammy…she grew up in this neighborhood and will know!) We all had so much fun. We started setting up around 1:30 and the last folks went home around 9/9:30.
Last year Duhdee and one of our neighbors replaced the fence between our yards and in doing so they installed a gate in the back corner so we can move from one yard to the next without having to walk around. One of the neighbors called it a “friendship gate” which I love. I think it says an awful lot about what a great place we live. I hope some day someone moves in on the other side (it’s a rental so turnover is high) and stays long enough so we can put one in on that side too.