Totally OT: Musings of a mom

Discussion in 'disABILITIES Community Board' started by SueM in MN, Jan 22, 2006.

  1. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    At the same time as D,L and K's Mom was posting her excellent thread on the Theme Parks Board, I was having some of the same kinds of thoughts of how welcoming or unwelcoming places (or people) can be and how I am so incredibly lucky to have my DDs, both my "typical" DD and my youngest DD who is multiply disabled.

    Youngest DD and I were on our way home from the one place in the world where we fit in completely. Everyone in that little "world" understands what we are going thru because they have been there, or somewhere nearby.

    The "world" we were in is tiny; one big room about 30 by 40 feet, one small (but wheelchair accessible) restroom and another room that we sometimes use if someone has brought treats for a birthday. When that happens, several of the participants just lick the treats, some are fed in messy mouthfuls shoved into their mouths by mom or helper, some can't eat anything by mouth and devour the treats with their eyes. Some don't look like they notice we have moved from the large room, until one girl cries (more like screaming) until we have finished singing Happy Birthday and several of them get startled and arms and legs jerk. My DD will never eat anything when we are away from home; afraid she'll make a mess and suspicious of plastic cutlery - she has broken one too many plastic fork when she couldn't control how hard she bit down. Her treat has to be wrapped up in a napkin and placed into her bag; where I may be able to remove it later without her noticing (or maybe not and I'll find it in a few days, a sticky mess of frosting crusted napkin.)

    In this world, my DD is not one of the most disabled, she is actually one of the least disabled. Welcome to the world of the Uniquely Abled Dance Class. My DD is the one with glasses in the back row on the far right of the picture. The one who is obstinantly looking out of the picture. This picture was taken a few years ago; the one they used before was better (at least of my DD). The photographer's helper that year was a cute teen guy. The helper when this picture was taken was a middle aged woman; not the same effect at all.

    And Uniquely Abled we are. Some participants can walk a few steps, some can talk, some can understand everything that is said to them, some can drive their own wheelchairs, but no one in the room can do all those things (except us helpers, parents or other family members who are watching). Some participants are wheeled around the room, as insubstantial and apparently as unfeeling as ghosts. Sometimes a piece of music or movement breaks thru to one of those participants and they smile or make a sound. In our world that is a cause for group rejoycing because we know how precious that connection with the world is for the parent of that child.

    Some of us envy other parents because of things their kids can do that our child can't:
    • I envy J and N because they can talk. (J and N are in the first row, the 2nd and 3rd from the left).
      Mothers of typical children wouldn't understand that because, by typical child standards, J and N can hardly talk at all. They speak in quiet, breathy voices with pauses between words as they struggle to find a word or force it out. My DD is one who can understand, but not talk. She's sometimes very noisy, but doesn't have the ability to say any words that people in the "normal" world can understand. She talks in signs, gestures and what Ursula in the Little Mermaid calls "body language".
    • J and N's moms have told me that they envy me because my DD is fully grown, but is tiny (5 feet tall and 86 pounds), a perfect size for transfers. J and N live in a world of using Hoyer lifts to move from place to place because they are too heavy to be lifted and can't support their own weight. I'm lucky because, not only is DD tiny and light, but she is also able to stand and walk if I hold her up (clumsy and lurching, but walking and easier than using a lift).
    • I envy LR because she does a good job of controlling her computerized talking device (even though she has to do it with scanning and controlling a switch with her head). (LR is in the front row, right over the word "the").
    • LR's mom envies me because my DD can drive her wheelchair with her hands, instead of a head array like LR has to use because she can't use her hands.

    I feel lucky and don't know how some of the parents survive their life; I don't know how I would.
    Some of the kids hardly react to anything and there is seldom a connection between them and the outside world. That would be hard for me, but they seem to cope. Maybe they are watching me and wondering how I cope with DD, who connects with me a bit too much sometimes. My DD sometimes bosses me around - everyone in the class knows the drill. She is obsessed with my purse. Sometimes, I have to wear it. Sometimes it is supposed to be on the floor in a specific place. If I leave it by my coat, she's OK for a while, then gets an absolutely paniced look on her face until I put it where she wants it to be (it's my purse, if anyone is paniced about where it is, it should be me). The back of her wheelchair would be the logical place for the purse to be, but heaven forbid I put it there, that is not part of my DD's "rules of conduct" to have it there.

    I also feel lucky that my family doesn't have a "before and after" like some of the parents do. Some of them put a "normal" child to bed one night and then something catastrophic moved them from the world of "parent of 'normal' child" to the world of "parent of special needs child". We didn't have any sudden uprooting like that; just a slow realization that our child was not following on the path we thought she was. I don't know that i could handle the fast uprooting.

    We feel lucky and thankful - today 2 kids are missing from class, but not for any bad reasons. One is on vacation and one is in respite care because her parents went on a trip and she had no way to get to class.
    In a "typical" dance class, kids might miss class because they forgot the date or had car trouble. In our world, missing the class is more likely something more ominous; one boy had pneumonia earlier this year, my DD missed classes a few times because she had seizures the night before and was too tired, a year ago one of the girls got bacteremia from an infected baclophen pump and nearly died. Today, our world is lucky because no one is sick.

    We feel lucky and thankful because in a world where parents without special needs children often don't stay together, most of the parents in our class are. And some kids have entended family members who come somtimes to observe the class. I feel lucky because I have a DH who loves me and adores our DDs (and they him). I have an older DD who is a real blessing. I feel blessed because she has found a young man who she loves and he loves her back. And both of them love my younger DD.

    We feel lucky and thankful that a wonderful woman named Nancy started this class - and provides it for us all free of charge. All because she had a friend who went blind and was sad that he would not be able to take dance classes any more. Nancy couldn't see a reason why not and started dance classes for people with visual disabilities and hearing disabilities and Developmental Disabilites and our class, where all the participants use wheelchairs.

    We feel lucky and thankful that we have others we can talk to who understand what we are saying. After class, we talk about things that wouldn't make ANY sense to most people; talking in a sort of verbal shorthand about power wheelchair settings and computers that talk for our kids and more usual things like glasses and bras for our teen girls (but from a different viewpoint) - how many parents are trying to deal with the problem of keeping glasses in place when the child moves their head on the headrest, or how many times you can bend wire rim glasses back into shape after they have been run over by a power wheelchair. I'm pretty confident that most mothers of teens have not discussed how to keep a bra on their teenage DD because her athetoid movements make her "slither" out of it.

    I am lucky and thankful that I happened upon the DIS boards in 1999, which led to this board starting and being able to share joys and sorrows and WDW hints with other people on this board. The people in the dance class world are mostly unaware of the DIS world that I am part of, although one of the moms gave me one of the most poignant suggestions I had for this board - her DS can't sit up without his wheelchair which has trunk pieces that "hug" him into his wheelchair and a head rest that cradles his head. When they went to WDW, one of the CMs at one of the photo shops that superimpose your picture against a different backround in the computer devised a way to digitally remove the wheelchair from the picture. With that piece of magic, the woman got to see her son for the first time without his wheelchair.
    True magic to her.
    And we all understood and were happy for her.

    So, I wish you all feel as happy and blessed today as I do, as we discuss little things that just might be huge for the person who we are discussing with.
     
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  3. Lillypug

    Lillypug Meeska, Mooska, Mickey Mouse!

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    :grouphug: Sue, your post and D,LandK's mom's post has really hit home for me. I know exactly how you feel. My six year old, Noah, has spastic quadriplegic CP. We special needs moms, caregivers and those with special needs have such a bond and are so thankful for the smallest most seemingly insignificant things to others that don't have a child or don't have a disability.
    I have met so many wonderful people since Noah was born that have made our lives so rich, when otherwise I would have never known them if not for Noah.
    God Bless you and your daughter (she is beautiful in her tutu :) ) This board is blessed to have such a wonderful moderator.
     
  4. melomouse

    melomouse DIS Veteran

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    Your post was just the one I needed to read tonite, just as I seem to often get what I need from unexpected sources at unexpected times.
    My Asperger's son, Evan will turn 14 at the end of this week. We are going through yet another set of challenges lately. At church service this morning, one of the elders spoke about his severely disabled daughter, whom I have met. She's just a year older than Evan. I don't know how he and his wife manage. But they do, by the grace of God.
    As do I, as do we all....
    I keep you in my prayers! And thank you!
    melomouse
     
  5. spotdog

    spotdog Mouseketeer

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    I struggle with my own mental illness and often care for "normal" neices and nephews.

    I can only offer compassion for those who love and care for children who have physical, mental and emotional challenges. :angel:

    All I can say is that this is a safe place to vent frusterations.
     
  6. SueOKW

    SueOKW Go Tribe!!!

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    funny world, ain't it? Some might look at us and think - oh that poor family. We think, boy - are we lucky (in an unlucky kind of way! :teeth: )

    Thanks, Sue. :grouphug:
     
  7. BCV23

    BCV23 <br><img src="http://www.wdwinfo.com/dis-sponsor/i DIS Lifetime Sponsor

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    Beautiful post and beautiful daughter, Sue. :sunny:

    And I love the bit about your purse. :rotfl2:
     
  8. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    Thanks everyone. Glad you are enjoying this.
    I thought I had it figured out this time - I used a little backpack, so I could strap it on behind me and she'd be happy.
    No go. If it is holding my stuff, it is a purse and belongs where purses belong. You don't mess with the rules of conduct.
     
  9. Tissa

    Tissa DIS Veteran

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    Great post Sue :thumbsup2
     
  10. SplashMom

    SplashMom I have a whole new perspective on life!

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    Thanks so much for a wonderful piece of inspiration! :thumbsup2 I have two children with diabetes and they look 'normal'. People make comments about how difficult it must be (and it can be) but I am thankful daily that they can make choices to maintain a full and happy life. Our conversations are totally foreign to outsiders--hypos, hypers, blood sugar levels, etc. Things change hour to hour and you must always be prepared for emergencies. However, we must take joy in every moment and remember the people who struggle with more serious issues than us. I have many family members with various levels of ability and I see the struggles daily. Thanks again for putting things into perspective and allowing us to reflect upon our gifts! :)
     
  11. leise

    leise Mouseketeer

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    Lovely post Sue, thank you for sharing that wonderful world. Love the photo of the girls in their tutus, so pretty. princess:
     
  12. Forevryoung

    Forevryoung DIS Veteran

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    To everyone (including SplashMom) who made a comment about 'normal':

    "Normal is only a setting on a washing machine"

    There is no such thing as normal. I hate the word normal... everyone is different. Yes, some have more challenges than others but as soon as we see ourselves as "not normal" we get discouraged that we aren't or can't be like "everyone else".

    We are all (for the most part ;) ) wonderful people. We all have challenges that select others understand. Thankfully, we are rarely truely alone. :grouphug:
     
  13. wide awake

    wide awake <font color=darkgreen>Nuts are good<br><font color

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    Loved your post Sue, also the one you referred to. The purse thing, so funny !!! Made me remember a toy workshop for parents of autistic kids...for some reason the term "accessorize" came up, and the person doing the workshop asked if any of us would like a "how to dress" workshop...we all died laughing...hello, if I'm decent I'm good to go !
     
  14. pampam

    pampam DIS Veteran

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    Love the photo of the girls in their tutus, so pretty.

    I can't find the picture. Where do I look?
     
  15. michelle9343

    michelle9343 DIS Veteran

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    Thank you Sue . I feel like you were reading my mind. I have so many of the same feelings and always feel so bad when people pity us or say I could never do what you do. Being a Mom , you always just do it. Many days are so hard , but and the end of the night when I hug my daughter good night , I know how lucky I am to be her Mom.
    My DD is non-verbal, but is able to express her love better then anyone I have ever meet.
    I love the pocket book story...My little Angel has the same obbession...
    I feel so thankful to have this board, I know others here will always undestand
    Michelle :grouphug:
     
  16. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    There is a link in the post. I'll repeat it here:
    Uniquely Abled Dance Class
     
  17. minkydog

    minkydog DIS Cast Member

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    Thanks, Sue for printing this. Your DD's picture is so pretty--every little girl wants to be a dancer.

    Michelle, i know exactly what you mean. i get it all the time--"You're so amazing, I don't know how you do it" "You poor thing, I feel so sorry for you" "I could never do what you do" My answer is always: Sure you could, if you had to. If it was your child you would do anything it takes. Anything. Failure isn't an option :confused3

    My 10yoDS Christian is very mentally handicapped and autisitic. He will never live unsupervised. He can't talk or take care of any of his personal needs.He is the picture of ADHD. But he is the happiest person i know. He has a great life, in his opinion. You can't be with him and not have his joy rub off on you. To be with Christian is to witness pure love in motion.

    "Don't feel sorry for me," i say. "I feel sorry for you!" Because they'll never, ever really know...
     
  18. mbb

    mbb <font color=green>Wishin' & Clappin' & always Beli

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    I'm putting that on a t-shirt!:teeth:

    Thanks Sue...and Forevryoung..and everyone else who takes the time to pop in here, to chat and share - and not just about WDW.

    You're a special group of people..and I'm thankful for all of you.

    :sunny:
    Mary Beth
     
  19. taximomfor4

    taximomfor4 <font color=purple>Needs a few Ricola drops<br><fo

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    Thanks, Sue, for another great post. Got me teary-eyed for sure.

    I soooo get the jealous thing...I even get it on this board. We know a list of DD7's challenges, but we don't know WHY. She is diagnosed (aka labelled) with no syndrome, no disease, no specific condition...no umbrella "term" for her list of issues. Thus we qualify for no special services agencies, no special needs camps, no BCMH, nothing. Even the school is limited in what they must provide, since she doesn't have one of their "qualifying conditions." Just a list of special needs. SO I catch myself getting very jealous of parents who DO have some support...either a Foundation, website, parent group, whatever. Even many of my family members make it clear that they don't believe anything is really "wrong" with dd. Mostly they think we just like to coddle her. At least I know now that I am not the only jealous one! (And I suppose I have good cause to suspect other "Special" moms are jealous of our situation...a little is wrong with many body systems, but NONE of them are majorly affected.)

    The picture you linked is beautiful, and very inspiring... for special kids AND for "Special" parents.

    And to think, until I found the Disboards (and the DisAbilities board in particular), I had no intention of EVER taking dd to WDW. What a life-changing resource this has been!

    Beth :grouphug:
     
  20. Forevryoung

    Forevryoung DIS Veteran

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    Unfortunately, you would be surprised. I know a mother with a child who has cerebral palsy. This mother complains to her daughter every time she has to take her to the bathroom, every time she has to get her dressed, every time she has to carry her up and down the stairs. Sometimes it's a little comment and sometimes she yells at her that she's not "standing straight enough" or whatever it is that is bothering her. The mother tells her daughter constantly that she "talks too much". She clearly forgets that there was a large chance she would never hear her daughter talk. The mother has had almost no help in the past 11 years since her daughter was born, she is bitter. Her children are bitter. She hasn't failed but she is unhappy, her family is unhappy. The child who is disabled blames herself. Some parent's just can't do it.

    Your children are lucky. :grouphug:
     
  21. Nordicpollan

    Nordicpollan <font color=9933cc>Has some dodgy rellys<br><font

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    I love this post :sunny:
    My DS2 has lots of special needs and has spent many years going through the 'system'. Most of his school friends have been together since they were 3 (they are all 18 to 20 now). Their is a group of Mums who have grown old together! All our children have very different disabilaties and we spend time wishing our own child could do things that others in the group can but at the end of the day we all love each and every one of that group for themselves. When one is ill we all feel it, when ones condition hit a new low we all have a cry( sometimes alone, sometimes together) and when, as has happened twice now, we loose a one of our group all the Mums meet together and we support the grieving family as much as they want and all of us live for the day. We do plan things like holidays but on a personnal level we rent a property because it means we have more money to spend on DS2 and the things he likes. I always say unless you have walked in our shoes you will never know the journey we take on a daily basis.

    I'm also blessed with DS1 who has the most fantastic relationship with his brother, I know that if the boys didn't get on life wiould be one big juggling game so although I'm not a very religious person I do thank God every night for my boys and how much they love each other

    Karen
     

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