Disabled for Life

A while back, Charlie was evaluated by the office of Persons with Disabilities to see whether or not he would remain on the state’s list of disabled persons. There are several categories—things like “gross motor skills,” “fine motor skills,” “speech,” "self-care,” etc. If you score below the 60th percentile in two areas you stay on the list for three more years. If you score below 60th percentile in three or more areas AND have the appropriate diagnosis, you get on the list for life.

The evaluation included a whole range of things and truthfully there was little I could answer “yes” to. Despite this, I was devastated when I got the call telling me that Charlie was “disabled for life.” It just seems so finite—like there’s nothing I can do. She also told me the parish had agreed to pay to have a wheelchair ramp installed on the outside of our house.

I should be thrilled about the ramp. I knew we would need one—we live in South LA and our house is raised three feet–but expected we would pay out of pocket for something like that. Now, it will be taken care of. Hubby, the engineer, was more interested in that news than in anything else we’ve done over the last few weeks.

I’m trying very hard not to think about the other side of the conversation—the part where my child is disabled for life. The part where he scored below the 60th percentile in three areas.

I can remember being in Elementary School and getting very upset because I’d  scored in the 87th percentile on a standardized test. I was horrified and disappointed in myself. I’ve always been a 90th percentile and above—preferably 99th—kind of gal. I do tip of the top.

Charlie doesn’t do average either and it breaks my heart. My beautiful, tiny boy has already failed so many tests. I know, logically, that it’s just a test. I know that they do nothing to describe my child’s potential or even the amazing odds he’s overcome in just three years.

I also know that I have a long way to go before I’ll be good at living on this side of the bell curve. I have miles to go before I learn to fully detach from this unit of worth.

I’m trying, but some days are harder than others.

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Comments

  1. Katie,
    You are doing an amazing job with Charlie and he is blessed to have you just as much as you are to have him. Some days are so much harder than others and I pray that tomorrow will bring you a better day.

  2. Witkowski Family says:

    It hurts to hear this sort of stuff, hon. I'll be thinking of you guys *hugs*

  3. CountryCouture says:

    I can't imagine hearing those words or facing the challenges that you face every day. I LOVE your blog and I always look forward to seeing your fabulous ideas and precious Charlie's photos. Your blog is my daily reminder that the reason we are here on earth is to glorify God and be an example of His unfailing love, NOT to achieve individual greatness. Y'all already score high in what matters most…love.

  4. words are just words. They're just based on someone else's experience in another time. But, really, call it whatever you want, as long as our kids get the services and accomodations they NEED!

    Oh, and forget that pizza or whatever he's eating, I wanna take a bite outta him!! Such a cutie!

  5. To hell with those tests… Really Katy, you have an AMAZING, and I mean AMAZING little boy who will spend the rest of this sweet life knockin' the socks off of people because he is so good and so brilliant. I know it.

  6. TherExtras says:

    "I have miles to go before I learn to fully detach from this unit of worth."

    You are still "tip of the top" – being primarily responsible for expanding Charlie's potential and carrying him over those amazing odds. He is part you.

    I can imagine his life off this particular list in the future but in the meantime, I'm glad they are giving you the ramp.

    Barbara

  7. Candace says:

    Ah, Katy! We got this in December with Faith. We knew she would qualify for DDSN and really we knew she would be a "for lif-er" and on top of that we needed her to be that to continue much needed services. But it was a HARD pill to swallow, none the less! I try really hard to remember that the label does NOT define in any place except the paper it's written on! Charlie is NOT on the other side of the Bell Curve and neither are YOU! You live on a different BELL curve…the Charlie curve!

  8. Wahzat Gayle says:

    I said a prayer for you and Charlie today even before I read this post… glad I did.
    As you said this is just a test and it does nothing to describe Charlies potential. Continue to believe and be strong.
    Hugs to you

  9. katykatykaty! may i remind you that if you had believed what "they" said in the first place, there would be no conversation today.

    these evals shouldn't even be called tests. they should referred to as guidelines for receiving services!! in which case, charlie passed with flying colors! i think he knew what he was doing in there and figured out a way to help his maw and paw!!!

  10. I have no knowledge of testing or disabled lists (as yet,) but I cringe at the harshness and finality that seem inherent there. Surely there's a better way to get families the services they need. Regardless, I just wanted to say again, as I have told you before, that I truly truly believe a: Charlie's life, just as it is now, is a gift to everyone and to his parents in particular and that b: you are doing the best job anyone ever could parenting him. Seriously. You're the perfect match. Neither of you are failing ANY sort of test, real or theoretical. You are excelling.

  11. I HATE evaluations. I'll be thinking my life is pretty good until I have to fill out those yes and no questions. Sometimes it's pretty quick because most of the answers are the same…no, no, no, no, no, no, no, no, no, yes. It's hard. It smacks you in the face. Seeing it on an eval is just really, really hard to ignore. It can put me in a negative state of mind. We've been told that Elijah will never be independent, so I guess that's kind of like 'disabled for life'. It's a hard pill to swallow. I so get you. You do a fantastic job with Charlie and often inspire me. Keep on keeping on. :) Yay on the ramp!

  12. Small Town Girl says:

    If anyone can help your boy reach is absolute full potential, it's you.

  13. Amy Genn says:

    I totally understand your pain…
    BIG HUGS from Washington state!!

    :)

  14. Katy. I know how you feel. I've dealt with the awfulness of labels, the kid who can't pass tests. I just had one of those days, too. But please remember, IT'S JUST A LABEL. An awful label. That the state uses. They probably think anyone who has cerebral palsy automatically qualifies as being "disabled for life." Within that term, there is a tremendous range of what having a disability can mean. Try to keep that in mind. And think of it this way: If getting a heartbreaking label means getting help for Charlie, then OK. That's what it is.

    As you say, Charlie has so much potential. He has time to make progress. He continues to make progress, and that's what is important.

    Screw the labels. He is the magnificent CHARLIE.

    xo

  15. MelissaInk says:

    Katy,

    Keep your head up! I think you do an amazing job as a mom – regardless of Charlie's diagnosis. You should be proud of yourself and of Charlie, no matter what side of the bell curve you're on. Us mommies are too hard on ourselves.

  16. luckeyfrog says:

    At THREE they decide if he's disabled for LIFE?

    That is ridiculous. No one else's future potential is determined by their performance at age 3, and it shouldn't be. I see students come into kindergarten with skills that often reflect their home, not their aptitude, so it seems unfair.

    I know you have been working hard at your home, so it seems natural to me that Charlie is going to improve a lot more.

    Maybe the official tag won't change, but it would upset me too. Try not to let it get to you too much- I think it's something of a CHALLENGE!

  17. darrona says:

    Thank you for sharing your honest feelings. That can help getting through hard times like this. I feel like I'm reminded of my daughter being disabled for life every summer when she's re-evaluated for school. Whole pages of "can your child do this" are "x-ed" out and skipped and that hurts. I wish there were more questions about their personality and what makes them happy as opposed to what they can and cannot do. Sending hugs your way. =]

  18. Anonymous says:

    Your son is receiving support and intervention at the 99th percentile level – don't discount that. It is important that parents of kids with disabilities accept the reality of the situation but also to know that every individual child's potential is unknown. You are doing an amazing job.

  19. Wherever HE Leads We'll Go says:

    Those words can be like a punch in the stomach! Like getting the diagnosis all over again. Even though you probably thought this would be the outcome it is still hard to hear! Grieving is an ongoing process.

    If this terrible label (and that is all it is since they cannot tell the future!) gets help for Charlie – great! You have done a fantastic job with Charlie. He has achieved so much in his 3 years and has so much potential for the future. Let him determine what kind of future he will have – not some "suit" with a standardized test.

  20. Felicia says:

    Some days ARE harder than others…but you know what? Charlie perserveres, he doesn't give up, and he passes the test of being the most adorable little darling and the light of his family's life. With flying colors!

    And as for "Disabled for LIFE?" People who were deaf were "Deaf for LIFE" until some genius invented hearing aids…who knows what medical interventions are around the corner? If only we spent more money on medical research, and less on wars and foolishness, maybe we'd be around that corner sooner than later.

    Be strong and make sure they install that ramp "just so"-because Charlie deserves the best!

  21. My dear Katy, I am sending you an e-hug and my famous homemade e-mac-n-cheese. With only the highest level of restorative powers. I've had quite a thin skin myself lately, dealing with far less than that – I can only imagine how devasted you are and my heart hurts for you. But please know this, I parent my daughter differently because of what I read on your blog. When I wanted Hannah to be happier with trying hippotherapy I got pictures of horses and showed her horses on the net and then real horses. If I wasn't thinking of you using "units" with specifric teaching goals I might not have approached the issue the same way with Hannah. Your belief in Charlie's ability to learn, and unfailing efforts to support his learning are reaching us all. You do great work, just by being you and Charlie!

  22. I have to agree with luckeyfrog. If you looked at how my step-daughter was doing at 3… can't say you would have been impressed.

    But this last 6 months or so… her English is improving in leaps and bounds. She can finally count to 10(usually) and is finally getting most of her colours right.

    I am having a hard time believing that Charlie can be evaluated at this age and have his destiny already laid out for him. My child's destiny isn't laid out for her – even at 5. Nor should yours be.

    Billie

  23. Katy we got this too at three when early intervention ended…I think it is crazy to test a three year old anyway. I agree with Ellen IT IS ONLY A LABEL. You are doing such a great job with your son (and some)! I worked and worked too with Cj and it PAYS BIG TIME!!! He is doing things THEY never thought he would. He is just starting to try say some more words at 7 years old! Today he almost held a cup all by himself with his Nana (with splints on his arms!lol). When I got home she was crying tears of joy because he said Hi and because of the cup! We are warrior Moms! I will never give up hope for my son and will never believe in labels. I have already proven many people wrong and will continue to do so!
    You just wait and see how Charlie will amaze you and THEM!
    I promise… I can see it in his eyes and he has you!

  24. Not sure I can add much of value here…except that I've been on the other side of that coin. When our daughter first was diagnosed with ASD we were in a pit deeper than I knew how to climb out of and yet we were told that she was not disabled enough to receive public (community) services. So we did much as you do and climbed out of the pit on our own. There are still hard days. With or without support it's a rough climb. Grab at every support you get and as much as you can ignore all the icky labels that come with them. We still receive services and support at school and some of those labels ("serious behavioral issues", for example) are not easy to accept, but if it means the school staff now has to do specific steps with my daughter when she is over-aroused and unable to calm herself, so be it! Push on, my dear, it's a long climb.

  25. Katy,

    Tests do not define who we are as people. They are just a mark. Not one that matters to those that we love. I know that this was hard, and you have hard days, but look at that little face and see what he has accomplished and how loved he is and how blessed you both are and know that you will do anything and everything for him.

    That is the greatest of life's rewards, two loving, capable, nurturing parents.

  26. My hubby is ever the optimist and lately has been saying Joe is going to be an aeronautical engineer when he grows up (he's been obsessed with flying objects)… I am not so optimistic. Some days I don't think I'll ever get used to the thought that my little guy probably won't live a "normal" life, that I may be caring for him for the rest of mine, that he may not grow up to have a wife and family of his own…

  27. Hopeful Mother says:

    I agree with many of the previous commenters… just a label and you are a great MOM! Charlie will defy any labels/odds/percentiles slapped on him.

    I think I'm going to be dealing with similar results and labels in a few months when Al.ex's first school district evals and IQ tests are done. Instead, let's look at this as "on the list for life so Mom doesn't have to keep jumping through bureaucratic hoops, and if he needs services, they will be there."