Wednesday, June 13, 2012

Living life with my special needs mom blinders on

Like a race horse, I power through life with blinders on. Special needs mom blinders, actually. They help me keep my focus on Max, avoid comparing him to other kids, and not obsess about problems that may lie down the road. This, I've learned after putting my heart through the paces again and again when Max was younger. It only bred anxiety.

Will he talk?
Will he read?
Will he write?
Will he go to college?
Will he have a good job?
Will he fall in love?
Will he get married?
Will he be a dad?

STOP IT STOP IT STOP IT, I'd tell myself. Eventually, I listened.

I can do my best to help Max reach his potential, but no good comes of chasing answers to what he will be "like" and what he will/won't be able to do.

And so, I don't let myself think too much about challenges the cerebral palsy and brain damage may someday present. Oh, yes, I know that Max is going to be at much higher risk for seizures when he reaches teenage-dom and his hormones go wild. I know, from last summer's serial casting, that as he spurts up his leg muscles are going to keep on tightening and perhaps other ones as well. But with my trusty blinders on, I keep my sights on Max in the here and now.

The major problem with wearing blinders is that when they get knocked off, you might just freak out.

That right foot Max got serial casted has started to turn inward again. His physical therapist at school noticed it first. One day as Max was walking around the house, I saw his right foot going crooked and my heart lurched. Max was due for a new set of orthotics, though, and his therapist and I hoped they'd do the trick.

He's been in the new orthotics for a couple of weeks and I thought I saw improvement, but not consistently. Then I got an email from his PT. She's been watching his leg closely, she told me, and she thinks the problem with his foot turning inward is starting at his hip.

The therapist said it was nothing to be alarmed about, and that she just wanted to keep an eye on it and prevent it from getting to be more of an issue as Max grows.

I was totally unnerved, and scared. It was a new body part to worry about, another way the cerebral palsy may cause trouble.

I handled it in my usual way of dealing: take action. I'm trying to get an a.s.a.p. appointment with the physiatrist. I've Googled hip problems and cerebral palsy. (Says Children's Hospital of Boston, "Weak muscles do not support the bone and joints as well as they should, which can lead to scoliosis, hip dislocation and foot and ankle deformities.") Also, I ate too many Oreos.

I'm trying to not let worry get the best of me. Only my blinders are completely trained on Max's right hip. Is it moving well? Is it off? What's a hip supposed to look like, anyway, when it moves? And is that foot straight or crooked?

Oh, sweet boy, please be OK.

Image: Flickr/SamC


  1. Oh, ((((Ellen)))). I hope that it is nothing serious. My kid's PT called me up this spring and said she thinks my kid's knees are turning inward and that we needed to have it checked by the pediatrician. This was a new issue for us and I immediately flipped out. (I have found that no amount of Oreos cancels out Panic Googling, by the way. I have to go straight to Ben and Jerry's to cancel out Panic Googling.) We were lucky this time - the pediatrician is not concerned about the knee turn. I hope that Max's hip turns out to be nothing to be concerned about either - or at least something that is correctable with orthotics and nothing more.

  2. Oh I completely and totally 100% empathize. Going thru some similar things around here... I love my blinders.

  3. I hope Max is OK.... I just wanted to thank you for this blog. My daughter, Emma just turned 3 and has CP. It is so nice to read that I'm not a bad person if I don't want to go to a birthday party etc. More importantly, it is a relief to hear that it does get easier and that I'm not traveling this road alone. You have no idea the impact you have made on me!

  4. Tess has this problem with her hips (worse on right than left) and causes her knee to roll in and her to cross her right leg over her left often. We did Botox injections (she was under light anesthesia during) and it really helped! Hips back in sockets and very rarely crossing her leg. We have not had to repeat the Botox yet but may need to in the future. If you haven't discussed this form of therapy yet, it may work for Max. Good luck!

  5. Hi! I stumbled across your blog, and I wanted to offer some words of encouragement. I am 47 years old, and was born with spastic Cerebral Palsy. I have had many operations done that were experimental (you are SO lucky to be living in this day and age!) to deal with things like hip contractures and other muscle contractures. My legs look like I was in a major car accident from all the surgical scars!

    My parents were told I would not talk, walk, sit up, or even be able to feed myself, when I was diagnosed at the age of 3. Mom got so mad she came right home and taught me how to crawl. Gotta love parents who get pissed at doctors.

    I currently use a motorized wheelchair (by my own choice), because at the age of 21, I decided it hurt too much to walk (with crutches and bilateral AFOs), I used a manual wheelchair until I was diagnosed with carpel tunnel, then switched to a motorized one. My current chair is very specialized, and helps keep me free of pressure sores, etc.

    I am married, with no kids. Not that we haven't tried, but I lost my left ovary and 2/3 of my right ovary to ovarian cysts. Oh, well.

    I am one of the US's top service dog trainers, and I run a list for those training their own service dogs. The Department of Justice sends people my way when they have questions about service dogs and training.

    No, I don't have a normal job, I answer questions related to service dogs and disability on the web and via the phone. It's rewarding and something I really wanted to do. My website is #1 on almost any search engine you can name (after paid ads), due to its content. Maybe Max can get a service dog when he's a bit older to help him. A boy has to have a dog, and why not have a dog that can pick up stuff for him, help him walk, or pull his wheelchair, carry stuff in a backpack and be an all around pal. I've used dogs for 20 years, and while I mostly used a wheelchair, my 2nd dog did learn to assist me in walking short distances. And he allowed me stand up to get things off high shelves.

    I'm sure Max will marry, have a job, and do whatever he wants. Be it from a wheelchair or walking. I'm glad he's walking now, but I will warn you, when he gets older, he may decide to do wheels, like I did. Too much pain and exhaustion.

    If you want to talk because I'm an adult with CP, drop me a line. I'll answer any questions you may have.

  6. Will be praying for his hip. They have been watching Carsyn's hip closely. Have you heard of Swashes?

  7. I hope his hip is ok.

  8. In live your pain! We've been doing everything we can here to keep Jackson's hips developing and in place, but his last set of xrays showed both are coming out and his orthopedic surgeon recommended surgery. :-( I hope things go well for Max. One of our PTs here swears by "e-stim" as a way to loosen tight adductors, hamstrings, etc. if you want to ask your therapists about it.

    Hugs to your both!!

  9. Heather, I'm so glad the knee thing turned out not to be a THING. Do you have a physiatrist in your doctor entourage? Max has seen one for years, to give him Botox and keep an eye on his limbs. (So maybe Botox will help with this? Have to see.) Oh, and I am capable of simultaneously Panic Googling AND eating Oreos, which you cannot do with ice-cream, so Oreos are more dangerous.:)

    Billie, do you have designer blinders? I do. Prada.

    Cassie, hi! Welcome. Thank you. It's a learning/adapting/dealing process, as you can see!

    Dana, I am SO glad to have you here, and what you wrote was utterly and completely inspiring. A service dog may be in his future, but right now I can barely handle a goldfish.

    Sarah and Anon, thanks, good wishes always welcome. I just Googled Swashes, I've seen other kids wearing them, and I will put it on my List Of Things To Ask About.

    Jana, I will also ask about estim. I know surgery's a big deal, but hopefully it will do the trick. Hugs back at you.

  10. Oh Ellen, big hugs! Gosh, I totally empathize with every thing you said herein. We are dealing with a crazy, right hip! I also wear blinders. Without them, I am sure I would crack. Too much information and thinking can overwhelm me at times. I pray that Max's hip is okay! So gald that you have good therapists on your team. It's nice that they are proactive.

  11. I hope that he will be alright Hes a fighter he will get through this

  12. Dana--it was really nice hearing what you had to's always nice to know life is still full of possiblities for my child.

    Ellen--This post is so true..once the grieving process is over you focus on the current time which allows us to mentally stay in tact. At the same time this leaves us open to being blindsighted--like when i was told that my son actually is affected in three limbs rather than 2 as orginally thought, or now his left side which always had much less of the high tone, is actually worse than the right side now and his teacher's/ therapists telling me there is something else going on(cognitive) that he hasn't been diagnosed with yet(we always believed cognitive was fine) is full of surprises and added specialists :0)

  13. Heather: Knees turning inward. Classic CP problem. That's because the legs scissor in. There are things to do to fix it, but it usually requires surgery or PT. I can remember having surgery and then being stuck in casts from the WAIST down to spread my legs... and after the casts came off? I was in them for another SIX months at night to keep my legs apart. Not fun at all. Botox wasn't even invented when I was going through this, so you may want to try that. I'll post another idea that I had for everyone a bit later.

    Jana: I've never heard of e-stim. Is that totally external or do they implant something in the body?

    Ellen: I don't recall seeing how old Max is, but from his picture, he's not even in school yet, I suspect. He's too young for a service dog. You'd have to take care of it, and Max couldn't give it the commands to do the things he needs. Maybe by the time he hits high school. *blush* Thanks. I just wanted to let you know to not give up, and that Max isn't as bad off as some of his doctors say he is... if they have. Trust me, I've had doctors tell me many things in the past. Only thing they were right about was the no kids, but that's a different medical issue.

    Jody D: Of course! I really really hate it when so called 'professionals' tell parents their kid isn't going to do ANYTHING and is just THERE. Sorry, nope, the body may not work, but the brain is just fine in thinking and such.

    Okay, all, a little bit more about me... I have an intrathecal drug pump that pumps baclofen into the space around my spinal column to control spasticity. Your kids are all probably too young for such a device, which is implanted under the skin of the abdomen, and is the size of a hockey puck. HOWEVER, once they are teenagers, all should probably look into this. Having the baclofen dumped directly into the spinal column frees me from any side effects and loosens up my body quite a bit. I have to have it filled every 6 weeks, but that's a 1 hour appt, where it's filled with a normal syringe. You can't see it (other than a slight bulge under my clothes), and it's completely maintenance free for me. I am on a fairly high dose of baclofen, which is why the every 6 weeks, but some people can go as long as 6 months.

    The professional name is ITB Therapy, and is done at numerous places.

    Here's the link to Medtronics website (It is a page directly for those with CP)

  14. Just noticed Max is nine... Ellen-he will be ready for a service dog any time now. There are programs that train dogs and give them to kids as young as Max.

    Hope you forgive any typos... I'm typing this on my Kindle Fire.

  15. Hello Ellen, I know you don't know me. My name is Kim, I blog over at I wanted to let you know that your blog, specifically your post today, has inspired me to take off my 'blinders' a bit {perhaps in a different way} and share more of my life. I've mentioned you in this post

    My daughter also has mild cerebral palsey and has hip issues. For now we 'watch' things. She has had some surgeries on her Achilles Tendon and some knee surgeries. Her legs turn out from the hip. She had congenital hip dysplagia as an infant and wore a sling.

    I will keep you and your son in my prayers and thoughts that God will intervene!

    So glad to have found your blog recently!

  16. E stim is external,its little sticky thingys on wires attached to a box that you do for 30 minutes 2x a day.My sister suffered a minor stroke in april 2011 after a tonsilectomy does e stim 2x a day and recives botox injections twice a month on her right wrist which is unusable

  17. totally get it Ellen, in a completely different way. Oh how I love my blinders, they are my very best friend... until they come off from being run over :/

  18. Hi Ellen,

    A friend told me about your two blogs and when I remember I visit, read and enjoy.  I read your post about Max's hip just now.  I have a seven-year-old son William who has hydrocephalus and CP of the spastic diplegia variety.  He has high tone in his legs, feet.  We live in the Seattle area and there is a great rehab doctor named Dr. Apkon who joined Seattle Children's a few years ago.  She specializes in CP treatments and was at a peds hospital in Denver.  Previously at Seattle Children's we relied on neurologists and others see orthopedics (William had never) so we were happy when doctor was recruited specifically for CP.

    William had a 25% subluxated right hip but after the most recent x-ray it improved dramatically (so it can change which is good).  Apkon did phenol injections in his hamstrings and adductors 2 years ago under general and it gave us a time to do some intensive stretching of his hamstrings and adductors to keep pace with his bone growth.  I was a nervous wreck about it...she recommended this over Botox because she could target larger muscle groups vs. the Botox.

    Recently Dr. Apkon recommended a gait lab study to get hard data on his dynamic and static movement in addition to hamstring lengthening surgery (which we want to avoid if at all possible just because there is no good longitudinal outcome data).  We are going to the Children's Hospital in San Diego because she recommended this particular gait lab over others including Seattle.  Hassle but we will follow her recommendation for the gait lab to gather data to assess the next step for surgery or not.  William has not had serial casting.  He does wear custom AFOs and the lovely and stylish Hatchback shoes to accommodate the girth on the AFOs.  We also let him run around in bare feet after about 6 hours in his AFOs and shoes...I don't see a huge improvement in his gait with his AFOs so my jury is still out on their efficacy.  

    William's PTs (he has three:  yoga PT, hippotherapy and traditional) think he has both some tibial rotation and femoral rotation of his right leg.  His therapist today recommended theratogs (to the tune of $500 for this particular set of spandex and bands).  I saw the child before William's appointment and he was trying out some theratogs and sure enough it helped his foot that turned one hour.  Fairly amazing and I am usually not amazed by PT treatments.  In hopes of avoiding the hamstring lengthening surgery, we will be buying some theratogs and upping the intensity of his home program (which consists of a mostly idle treadmill, alternating night splints, a Nada chair, estim and Sun Salutations yoga chart which half the time we can't find)...We might do "therapy" at home once a week if we are lucky.  

    So I wanted to share my son's experience with his CP and treatment in case it might be of any value to you for Max in particular about the gait lab study and the theratogs which impressed me on the child I saw today (Wyatt) whose foot turned in without them.  It helped

    with femoral rotation because of these straps that pulled his muscles outward on his thigh and hip which in turn corrected his foot which turned inward.  Trussed up like a cute little spandex turkey but it worked and one can wear them under clothing although I would imagine it would be hot in the summer.

    Your writing is very poignant and can make me laugh out loud. Thanks, Lori

  19. Parents of kids with CP might find this book helpful (in paperback and ebook):

    I have read parts of it and find it useful in understanding medical speak when talking with docs and PTs.

  20. The book is called Cerebral Palsy A guide for Caregiving by Freeman Miller MD and Steven J. Bachrach MD

  21. An explanation of a gait lab study by Dr. Miller at A.I. duPont Children's Hospital in Delaware:


Thanks for sharing!

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