“A lot of people are tired around here, but I’m not sure they’re ready to lie down, stretch out and fall asleep.” ~Jim Jones
I’m tired. And yes, that quote is from that Jim Jones.
I need to get away for a day later this week, and it is school vacation week, so Pearlsky is home. It took me three days to arrange for care for her, one nanny from 8 to noon, another noon to 1:30, the next until 6:00, then one more for the evening. And you wonder why I’m tired?
Rick Santorum? Gonna vote for him? I have two words for you … Terri Schiavo.
Do bad things happen to good people to offset the good things that happen to bad people?
Pearlsky will never walk. Even if her body would let her, her mind would not. It just ain’t going to happen. So why bother with afo’s (those funky ankle brace things). Does it matter if her ankles turn in? I stopped using them. Go ahead, call social services. Let them take her away. I dare you.
I get an email from some woman who found my foundation about Pearlsky and David’s disorder (remember, there are a total of four known cases in the U.S.). In part:
I have an 8 month old baby girl … she has been struggling with multiple health problems since birth. She grows very slow and we have struggled to keep her out of the failure to thrive category, she has had issues with hitting her milestones on time, possible seizures, and tons of digestion problems. It has been a serious struggle for us getting answers to her problems …
Due to me having an inborn error of metabolism (not completely diagnosed… have been dealing with metabolic issues since childhood but have never seen a metabolic/geneticist/ext) …
Our doctor (a naturopathic physician) said she does not recommend seeing a neurologist until my daughter is 18 months old …
How hard do I bang my head against the wall? She suspects the child is having seizures yet the naturopath is saying she should not go to a neurologist … and she doesn’t. Why should she? She herself has a metabolism disorder and never saw a metabolic specialist. There are things in this world that are not meant for me to understand.
Why is there the occasional day where Pearlsky is “there”? I mean here. Ok, I mean there are days where she understands, where she will look me straight in the eyes every time I ask her to, and her soul is obvious. Her eyes are not empty, but full? The days are few are far between, but noticed by others as well. What is that about? More to the point, why are those times harder than when she is hollow?
Trazodone is used to treat depression. It has the off-label use as a sleep aid. I know many people who have tried it, some use it fairly often. Several of my friends have told me that they rarely use it because it gives them really funky dreams, usually unpleasant ones. Actually, they all report strange dreams from it.
I give Pearlsky a Trazodone nightly to help with sleep. How fucked up is that?
Want to see why I have not caused Pearlsky and me to be a statistic?
Happy 79th birthday mom!
Damn I’m tired. Pass the kool-aid, will ya Reverend?
Skip the kool-aid. It tastes bad even when it’s not laced with something nastier.
Hope you can get some rest AND some sleep.
Hugs if you want ’em.
Hello Single Dad,
Let me start by saying how much I appreciate your blog. I cannot necessarily say enjoy, as I do not enjoy having my blood boil, which is what happens when I read about some of the situations you and Pearlsky have to deal with, and the people you rely upon to educate and care for your daughter. I am an early interventionist, my background and certification is in Special Education. I work directly with babies and families in their home, in our states zero to three program. Part of my job involves uploading a monthy progress note into the computer system, which can be read by service coordinators, State educational officials, and parents. I try hard to write my notes in such a way as to be honest, nonjudgemental and always try to write direct observations. I thought about a previous note I read from another provider, which stated she was thinking of hotlining a parent because the mom could not put the AFO’s on the baby correctly. This made my blood boil, as the baby was going to be fine regardless of the damn AFO’s. Secondly , who in their right mind would be so self righteous to assume that a paren’t confusion over something so simple could be a reason to take away their right to be a parent. I continue to marvel at the egos that abound in the “helping professions”. Again, thank you for your honesty with this blog, it keeps me coming back.
Well maybe we can meet in prison, finally, because I haven’t put the DAFOs on Sophie’s duck-feet in YEARS.
I’ve missed you and am sorry to hear that you’re so tired — and not a little fed up. I hope you can figure out a time to rest on that get-away — or maybe something more?
My Sarah too, no AFOs. No back brace either. And finally, no brain MRI. Ever. Shocking. I know 🙂
You do the best for you and Pearlsky!!!
I tell me special needs parents “if it works for your family, it doesn’t hurt and not illegal, GO FOR IT!”
Hope you get some you time!
Ps, Lovely pic xx
Zoey only wears her AFO’s to therapy. For half hour sessions. Twice a week. That’s all. Infact,the minute we get in the car, they come off.
Have a good little get away.Elizabeth and I are going out Saturday and we will think of you and hope that a bit of respite, helped.If only a little.
LOVE the picture of you and your mom.I saw the edge of it coming up as I was scrolling down and reading and I thought, could it be? The much elusive SD? And there you were, with your beautiful mom.Just posted a picture of my dad. He celebrated his 80th on Sunday.
All my best from California to you and Pearlsky.
AFO’s? Good god man if you saw Sophie’s feet you would die. Might send you a photo. We couldn’t use any sort of bracing on her because of the nature of her brain injury which dictated that she push against any sort of stimulus to the skin. I think whether or not AFO’s are any good outside of cosmetic depends on the kid. As for that naturopath…whoever that person is is some sort of sheister. a REAL naturopath will ALWAYS direct a client to where they will get appropriate care for their condition, when that condition is beyond their expertise. Someone needs to tell your email friend as much. Love the photo!
You are absolutely right about AFO’s/DAFO’s. There is no evidence of any long term benefit for either improvement or long term correction of deformities. We have done ABR for years with my son and AFO’s, splints and standers are counter-indicated. Here is a link to a video by the founder, Leonid Blyum, which explains scientifically, if anyone needs, why AFO’s are bogus: http://vimeo.com/29496122
PT has really not evolved in the past 50 years. the more you force a body part into a position, the stronger it resists that position … and they hurt like hell.
“Why are those times harder than when she is hollow?”
Why do I keep going back to that question and attempting to figure out the answer? Why do I relate to that one question so much? Why do we, when things are supposed to be ‘quote/unquote’ THE BEST FOR OUR SITUATION, feel worse a lot of the time? Why is the answer to that question so elusive? Why am I commenting in question form? Do you hear what I hear? Brown bear, brown bear, what do you see? Is that a .44 Magnum in your pocket or are you just happy to see me?
I love and hate the days my daughter is “there”. I think they are scary because, yes, she may actually understand everything. We do use her AFO’s because she does do some weight bearing in a stander. She can’t tolerate 90 degrees upright, but she can tolerate about 50 degrees upright. The month following her initial brain insult, her feet were pointed straight down like a ballerina. She looked like a sleeping ballerina. I couldn’t stop staring at them night after night. In fact, they bothered me more than all of the weird stuff that was sticking out of or going into her brain. I just kept thinking how will she walk when she wakes up with her feet looking like that. We’ve learned so much since then. She was normal for four years. You would think those four years of normal feet, normal spine and hips; normal child all around would make a difference. This stuff happens fast! She already has a subluxed hip and curved spine. Her hip is 45% out and we will find out more about how curved her spine is coming up. I’m learning fast that we will go insane if we continue to do everything “they” are recommending. We did do heal cord tendon lengthening two years ago because her feet were so pointed downward. That’s the only reason we are able to get AFO’s on her. It’s exhausting. We have been doing EVERYTHING we’ve been told to do regarding hips, posture, splints, therapy, and still her spine is curving and her hips are coming out of socket. I assume next we will be hearing about hip surgery options and back brace options. I don’t know how they got us to do the heal surgery two years ago, but I can tell you the hip option will be a much more difficult decision. We are a lot less vulnerable than we were. We’ve learned a lot more from other Special families.
There are some bad apples in my Family. I have five brothers and two sisters. We can’t all be perfect! Anyway, when my perfect or what I thought was perfect, little girl had everything go wrong following her craniotomy for a brain tumor, there was a point I thought we were paying for some of my siblings mistakes. Yes, I was blaming my brothers for what my Four year old was going through. Nothing as devastating as my daughter’s situation has happened in our huge Family. I guess I felt like we were picked, and it was because we had to set some example for everybody. It was weird, like our suffering would save my drug addicted siblings. One is an alcoholic and one has a horrible heroin addiction. Well, they still are addicts! Their kids, my nephews and nieces, are healthy. They stay with other Family members. I guess all is offset.
I’ve taken trazodone. If it helps I slept deeply and without dreams.
Re: Pearlsky not wearing braces
I, uh, haven’t taken Monkey to see certain specialists in awhile, for a reason similar to yours for ditching the braces. I’ll send my contact info if you want to report me to Social Services.
The picture of you and your mom made me smile. She’s a beautiful lady.
Agree with Jo – great picture of both of you. Mom is still a beauty and the the smile(s) belie(s) the frustration (even if it may be temporary!)
Peace to you all
C
Your mom is beautiful! Mine just turned 77 last month. She and my dad have always been Daniel’s (and my) best friends.
I dunno if it makes you feel any better or not but I’ve tried every sleep aid on the market to help combat my PTSD and the only time I DON’T have crazy nightmares is when I take trazodone. Pearlsky and I seem to have a lot in common (such as our devilish good looks) so hopefully our reaction to trazodone is the same too!
Now I see where you and Pearlsky get your good looks.
BTW, my blood must be on permanent boil just from reading about what so-called “professionals” put you and other special needs parents through. Add the fact that I do battle with idiots like these every damn day at work and you’d think my head would explode.
Why are so many clueless and/or downright evil people drawn to the “helping” professions?
Doesn’t Pearlsky have seizures??? The doctor rx Trazadone for my son and it lowered his seizure threshold. It was horrible. It helped him sleep but he had some awful seizures while on it.
Hi, Disabled Dad. Your comment about “feeling soooo left out” keeps making me laugh for some reason. I’m surprised you noticed considering how generally MIA i am in the blogosphere commenting world. I’m sorry you felt left out! Truthfully, I did consider adding your blog to my most recent post. But I didn’t, although perhaps I should, because I find that I don’t allow myself to come to your site too often. The realities of day-to-day advocating you write of are too honest, too real, too close to home, and gut-wrenching for my conflicted and saddened mind to read regularly. I… cant tell if that is a compliment or not haha, but take from it what you will. Thank you for your comment that makes me laugh. Thank you for your writings on this blog.
My son takes Clonidine and Melatonin to help him sleep, as many children with fragile x do. I don’t think either of us could function without it. I think a lot of our families give up on AFOs or just allow us to keep them at school, which is fine with me. The kiddos are in their standers or using a walker at school and need those things for stabilization, especially in a stander. But I can see how using them at home would seem futile.
I’ve taken Zopiclone. Dunno if it’s the same drug or not but no wacky dreams here either.
I wear my AFOs because I am more comfortable with them on. Like Pearlsky I will never walk or even weight bear, not even in a stander of some kind, so there’s no functional gain to wearing them – but my ankles have such low tone that the bones slip past each other and subluxate when I move my feet, and that can be painful.
Does Pearlsky’s demeanour change when you put them on or remove them? Any sort of relief when they come off?
Screw using them just for the hell of it – but the stability might be comfortable or reassuring so give a nod to that side of things, yeah?
Becca, thanks for sharing how your AFOs help you. My son walks, but only with support (I stand behind him with my hands around his upper body, or if he’s feeling strong I just hold his hand). He has very low tone in his ankles and without the AFOs they turn completely in. Sometimes we walk from the bedroom to the living room without them, but it looks uncomfortable. He has no spasticity, just hypotonia. It almost looks like he’s walking on his ankle rather than his foot without the AFOs. Definitely a support issue for him.
You didn’t drink that Kool-aid, did you? Where are you, dear Single Dad? I miss you and Pearlsky.
Where are you? Is it time to worry?
I am worrying, too. Everyday I click on disableddaughter looking for a new post, and my hearts sinks a bit lower when I don’t see it. I hope that everything is okay with you in a “Other than that, how was the play, Mrs. Lincoln?” sort of way. My thoughts and prayers are with you.
Add me to the “worried” list. You ok?
Hi Single Dad. Stopping by to say hello and hoping all is well.
Hi SingleDad. Worried about you and sending good vibes your way!
We have one of those fancy, new-fangled, pump-her-up-to standing standers for my daughter, Camryn. We use it mostly as other good intentioned adults, I’m going to buy this fancy piece of exercise equipment and get into shape, use their elliptical machines, treadmills and bow flexes, much as a resting spot for clothes and a coat hook, in her bedroom.
AFOs…yeah we have them. If DCF was to take her away for the AFOs not being donned correctly, her Daddy would have been dragged away many moons ago. Hey, also if that be the case, perhaps the children of many of her physical therapists over the years should have been removed from their own homes as more often than not, those professionals couldn’t even properly don them. Camryn’s tone is fierce and will never improve. Only surgical intervention has been helpful. The only time I care they are on her feet is when I really need for her to sit up straight…which really isn’t too often.
Also, my daughter loves to “W” sit. We were warned many years ago how “detrimental to Caryn’s legs and posture” this could be. She started this “W” sitting when she was 3. I’m happy to report as of today at age 13, her legs are no worse, no better than they were ever expected to ever be.
If there is anything I will ever always HAVE to do in my life for Camryn it is:
1. Feed her 2 McDonalds fish sandwiches every single day for lunch. Oh the looks of (I can’t believe you feed your daughter that terrible food) from some parents and staff with each daily delivery.
2. Let her “W” sit as much as she wants
3. Play the only 12 (out of at least 100 Blues Clues episodes with Steve) that she enjoys and will tolerate, 24/7 or as long as her eyes are open. Lest you never feel the wrath of Camryn if Blue’s Clues is not playing in her immediate presence.
4. Be on the constant look-out for signs of brief digging. If you’re the sucker who should who leaves her too long to her own past-time…oh the mess that can be created with poop balls and wet diaper gel. She is better than Houdini: big-girl, homemade onesies, pants seen at the waist undershirts, footed pajamas put on backward to keep her from jimmy-ing the zipper down, gloves sewn onto the end of long sleeves shirts…nothing can keep her out.
5. Be at this child’s beckon YELL/SCREAM 24/7.
6. If not completely happy with Blue’s Clues in resting “W” sitting, have her wheelchair or automobile in motion at all times. DO NOT STOP or the siren whale will begin.
Be Well SD…we are here.
sorry, I did not mean to be anonymous. I want everyone to know who I am:..I’m Camryn’s mom 🙂
Kevin and I always joke that if someone were to call social services on us and Aria were taken away that they would return her within 24 hours and be like, “this is really freakin’ hard.”
Kevin and I always joke that if someone were to call social services on us and Aria were taken away that they would return her within 24 hours and be like, “this is really freakin’ hard.”