Friday, June 22, 2012

Raising kids with special needs and roller coaster days

About Max and roller coasters

Max has this fascination/fear thing with roller coasters. He's never been on one, but when we're at an amusement park he'll stand and stare at them, mesmerized, then shake his head and say "Nooooooo!" Then I have to say "Not for Max!" to reassure him that we won't be taking him on one.

Me, going up 

Today, we visited Max's physiatrist after his physical therapist at school expressed concern about his hip, and how it might be forcing his right foot to turn inward. The foot that he got serial casted last summer. I talked my way into an a.s.a.p. appointment because I was so concerned. Max's walking is a miracle (I do not use that word lightly) and anything that threatens it is A Big Deal.

Not to worry, the physiatrist said after he examined Max, and I just about swooned with relief. Max's hip looked fine to him, and he said he was walking well. The doc was especially impressed by how far along Max's comprehension had come, and his ability to stay calm—as a toddler, Max wailed his heart out at these appointments.

Score 1 for Max, 0 for cerebral palsy.

Me, going down

We're back home. Max is playing with a toy truck, and I'm filling out an application for long-term care insurance; Dave and I are considering it. It's the usual form mumbo-jumbo. Then I get to a list where I have to make a check if I have one of the following: multiple sclerosis, Parkinson's, Alzheimer's, cerebral palsy. A note in small type below the list says that if I've checked any of the above, I shouldn't continue filing out the form.

At age 9, Max would not eligible for this insurance because he has a condition that the company considers to be as degenerative as Parkinson's and Alzheimer's.

I am sad.

Me, going up

Max asks if I'll take him on the train. He doesn't have school, I'm off from work so sure, why not? We drive to the parking lot, buy round-trip tickets and settle in for a joy ride. "Pardon me, do you mind if I ask whether you like those headphones?" a woman seated behind us asks about the noise-reduction headphones Max has on. Turns out she's a local occupational therapist. I've been on the hunt for a new one for a year. We talk. She's worked with kids who have CP, she mentions some innovative-sounding techniques, she seems really nice.

I'm not a big believer in fate, but I am a big believer in the power of coincidences.

"Max, would you like her to come play with you?" I ask.

Max eyeballs her. "Eee-yah!" he says.

I get her card and we get off the train. I'm excited.

Me, going down

There is a big staircase at the station that'll take us to the other side for the return trip home. A conductor on break glances at the braces on Max's feet and gives him a pitiful look. "Awww, honey," she says. "Do you need an elevator?"

"Actually, he can handle stairs pretty well," I tell her.

I know she only means well, but I can't stand the pity.

Both of us, going up

Max keeps looking down the track for a glimmer of train. Soon enough, he spots it and he squeals. Few things make me feel as good as that squeal. We get on, grab seats and he contentedly stares out the window till we're at our stop. As we get off, a crew person helps Max down. Max gives him a high-five.

The two of us head back to the car, happy.

Roller coaster photo/The Two K's


  1. Go Max, Go!
    I can't stand it!! He looks adorable!! Nice bandana.... :)

  2. Thank you for a glimpse of what it's like to ride your roller coaster. Max is lucky to have you in the seat next to his.

  3. Think we can all share those days for sure. Some days I feel like things are going so well, my daughter doing great, moving forward..but then when the not-so-fun things happen, you can't help but feel bad. Think those roller coaster days are the days that I usually break down in tears because it's too much.

  4. Oh, I know that roller coaster well-it's reassuring to know that other people have the abrupt up's and down's as well. Max is truly an inspiration to me and my daughter, he is just so awesome!

  5. I have some experience in the long term care field. It's not a question of degenerative disease, but of the probability a person will develop a need for long-term care. It's the same way people with a history of cancer can be denied life insurance. It's unfortunate, but no one would be able to afford insurance without underwriting.

    Exceptions are group plans through employers, which generally have to be offered to all employees who are actively at work. If Max works for an employer who offers group LTC, he's qualify. (And group plans are often more affordable than individual plans).

  6. I met my daughter's current speech therapist in a totally random way and she has been an AMAZING part of our team ever since. (She and I were both at a support group for parents of kids with special needs but hadn't said one word to one another. I was talking to another woman and as I was getting ready to leave, that woman introduced me to her friend who happened to be a SLP. Who happened to have expertise we were looking for. Who happened to take Medicaid - something we were actively seeking - and who happened to be a sweetheart.) I hope that your random connection works out as well! Keep going UP UP UP UP UP!!!!!

  7. I don't think I've ever clicked over to one of your posts faster than I did with this one. I use the term "roller coaster" a lot. A lot a lot.

    As with any special needs mom - heck ANY mom - my ups and downs are directly connected to those of my children. Not everyone gets that.

    Thanks for sharing your story!

  8. Life is a rollar coaster especially when your dealing with teenagers! I am a middle school special ed teacher.One of my sstudents with autism has a similar fasnation with apples.He loves to hold them and throw them but wont eat them.

  9. Great post. Love the analogy and your insight. That pic of Max is so cute-- he looks so much like his daddy in it! xo

  10. Dear Mrs. Seidman,
    My name is Eric and I am 13.I have Spastic diplegia Cerebal Palsy.My mom reads your blog and thought I should comment about the pity thing.I hate pity.If I need help I ask, otherwise I am fine. I noticed you said she stared at his braces.Does he wear leg braces all the time? On one leg or 2? I always wear leg braces.
    Eric K.
    age 13

  11. I am assuming they consider cerebral palsy degenerative?!?! Are you kidding me! Honey, write a letter, or give me a pen and I will write one for you! {{Hugs}}

  12. Roller coaster days are the norm around here - I think of my house as a Bi-Polar household with the mood swings my Autistic son has & how we ride along with him, plus the good things that happen with regard to milestones & then the horrible meltdowns & tantrums. I'm happy happy when things are good, just gleeful - and totally crying uncontrollably when things are bad. Sometimes within an hour of each other. Thank goodness for those good times though.

  13. What especially helps with the roller coaster ride is stopping to connect with people here, relate, trade noes and share stories.

    Hi, Eric! Nice to have you here. That is great that you ask for help if you need it; Max still needs to learn that. About the braces: He wears them at school and on and off over weekends, on both legs. They really help keep him steady! His are blue, with trains, planes and autos (his favorite things).

  14. We are huge fans of fate. It's a bummer about the whole insurance fiasco though.

  15. Are you joking? CP is not a degenerative disease. I dont think the company even knows what a degenerative disease is to be honest.


Thanks for sharing!

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