The Elephants in the Special Needs Room

19 Jan

I posted about how inclusion/mainstreaming didn’t really work for us, and how going the dreaded special school/class has been the right choice, if not the popular one.

And boy, did I get feedback!  It was like I had just pointed out the emperor wasn’t wearing any clothes.  So many people saying “Yes!  Inclusion didn’t work for us either!  It’s not working for us! We need more options!”

Living in the world of special needs means, it seems that we keep so much to ourselves.  The most common feedback I get from the blog is “You put into words what I can’t say.”  and “I can totally relate!!!”   And I’ve realized, we don’t really talk about the elephants in the room.  Maybe because we’re too busy trying to keep them from stepping on tiny dogs and crashing into bookcases.

So I thought I’d point out some elephants.

SpottedElephant

#1  – My kid will live with someone FOREVER. 

This isn’t a popular thing to say.  “My child will age, but not mentally grow up.  She will need some sort of supervision for her entire life.”  Admitting that now means that I have had people tell me not to short-change my child.  “You never know!  She could become independent!”

Yes.  She could.  I would adore that so very much.  But the reality is, without some majorly miraculous mental growth spurt, we’re in this for the long haul.  And we must be prepared for that very real possibility.  And it’s okay if she has to live with us forever.  It just means we need to make different plans and have different priorities.  It doesn’t mean we won’t keep pushing her to reach her full potential.  It just means we’re more realistic about what that full potential is.

#2 – It’s hard.  It’s VERY hard. 

No, really, it’s hard.  Physically, spiritually, mentally hard.  And admitting it’s hard doesn’t mean we love our child any less.  It just means it’s hard.  I’ve got my chiropractor on speed dial.  I take Prozac to squelch my anxiety.  I quote SpongeBob.  I lock myself in the bathroom to have that good cry.  I realize with some terror that my child is nearly as tall as me and is just going to keep growing taller.  The word “puberty” makes me break out in hives.  Caregiving is hard.  Caregiving for a lifetime?  Is really hard.  But that doesn’t take any love away.  I will get all Liam Neeson “Taken” on your arse if you even imply I love my child any less just because I say it’s hard.

#3 – It can literally be a shitstorm.

We deal with more bodily fluids than an OB nurse.  Just last night, as I was going through comments here, I went “I smell poo.”  I went to investigate, and found my child, carpet, and bathroom covered in poo because Diarrhea Girl didn’t quite make it to the toilet in time.  After my initial crying out to God, I smiled at the girl, congratulated her for pooping so much, and cleaned everything and the girl up.

Because that’s just my life.  And so many others.  We deal with constipation, and diarrhea, and accidents.  We deal with vomit, drool, and blood.  We deal with things we’re not quite sure of, asking rhetorical questions like “What IS in your hair?” without really wanting to know.  And we do all this while laughing.  Because what else can you do?

#4 – Our sense of humor is different than the average person’s.

And by “different”, I mean, we’re kinda awful.  But we’ve earned that awfulness.  We earn it every day.  It comes from dealing with a combination of ridiculousness, bodily fluids, stress, and love. We have to have this black humor or else the tiny terrorists win.

#5 – We spoil our children, and we don’t care what you think about it.

I spoil Maura.  I can admit that.  I have always admitted that.  Not so much that she’s uncontrollable, but more than I would have if she’d been born your average every day girl.  I spoil her because I can.  I spoil her because she just gets so delighted with things, that it’s fun.  I spoil her because she goes through so many more hardships and struggles.  I spoil her because we don’t know what her lifespan will be, so I want every day to be her Best Day Ever!  – which may be as simple as getting hot cocoa together or snuggling in my bed watching a movie.

#6 – Our normal is not normal.

Our lives are so beyond normal that it isn’t even a setting on the television.  Our life was barely normal before we had Maura.  We gave up on any sort of normalcy after she came along.

And we’re okay with our not normal life.  Even though at the same time, it would be nice to have a break from said not normal.  We don’t want pity or platitudes about doors closing and windows opening, we want acceptance and the occasional child-wrangler.

#7 – Puberty is the scariest thing that will happen in our child’s life.

Seriously.  Puberty.  Enough said.

No need to stare...really...

 

 

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41 Responses to “The Elephants in the Special Needs Room”

  1. ainebmoloney January 19, 2015 at 1:59 pm #

    Hi phoebe.aine he from grove nor school.always enjoy herding cats.sent your one on inclusion to my Facebook people and got 57 comments !!all good. Keep up the writing!aine

    Sent from Samsung Mobile

    • phoebz4 January 19, 2015 at 2:16 pm #

      Hiya Aine! Thanks for sharing – and give everyone over there our love 😀 Maura’s still trying to squeeze into her school jumper, though it’s now officially a bit small on her.

  2. saracvt January 19, 2015 at 2:13 pm #

    1. We don’t talk a lot about this in our house because Daddy hasn’t really accepted this idea yet. Oh, they may NOT live with someone forever, but I’m pretty damned sure that they aren’t going to go off to college at the usual time–when you have a 12-year-old who just went gaga over meeting the actor who played “Skippyjon Jones” because she LOVES Skippyjon Jones (and yes, we got a few odd looks from the parents of preschoolers and kindergartners in line with us) and the other 12-year-old recently played joyously with a corn-popper in Target, you kind of get the idea that their development is not the average one. But that’s okay.
    2. God, yes, it’s hard. I occasionally say to myself, “Seriously, God? One special-needs kid, okay, but BOTH of them? Really??” And feel incredibly guilty when I do. But I love them both fiercely.
    3. Oh, yeah. Neither of my twins are potty-trained, which makes things like the upcoming Girl Scout horse camp Maddy wants to go to more than a bit scary.
    5. They are fun, aren’t they? My parents, who are missionaries to the Colville Indian tribe, recently mentioned that they came across girls named “Bright Sunshine” and “Gladeyes”. Maddy could have been a Gladeyes. She dances often and laughs a lot. Olivia, not so much laughing, but she says things in all seriousness that make me bust a gut. Like, upon learning that just because a commercial says it doesn’t mean it’s true & people are paid to endorse products–“I feel like my innocence has been taken away.”
    6. We have a magnet on our car that says “My family is a freak show without the tent” And we mean it.
    (Maddy thinks we should get the tent so we can go camping.)
    7. There is a book called “The Girls’ Guide To Growing Up: Choices & Changes In The Tween Years” by Terri Couwenhoven that is specially designed for the special-needs girl & it is EXCELLENT. There’s pictures & a section on staying safe. I’ve lent out my copy many times & bought one for Maddy’s best friend. Really, sit down & read it with your girl. She’ll be a lot less scared & so will you.

  3. franhunne4u January 19, 2015 at 2:23 pm #

    Phoebe, you have my highest respect – I could not even handle one not so challenging child, let alone three of them and then this one, who makes you exceed limits you might have thought absolutes. One has to be your kind of person, to be able to deal with your challenges. I could not. Really, not even with one non-disabled child. Hats off. Of course it is hard. And you have the effing right to say so! Of course you do not love your child less if you admit the hardship. Why should you go through this silently? It is not as if you are whining – if you complain, you do so justified and substantiated – that is not whining!
    You have every right in the world to speak about things that are – about your feelings, about your thoughts, about good and bad days. That despite daring to speak without a rose-coloured filter you carry on, with humour and grace, makes you an everyday heroine. Continue speaking about all – not just the funny and memorable moments – give those parents who are sucked up by the care for their children and just cannot speak out for themselves a loud and humourous voice.

    • saracvt January 19, 2015 at 2:31 pm #

      Actually, you could. That’s what all of us thought–“No way I could handle THAT.” And then you have the child(ren), they’re there, get used to it. So you do the best you can because what other choice is there? You may hate (and probably do) cleaning up the poop of a 12-year-old, but she needs you to, so you do.

      And you learn. You learn what you need to to help your child. Twelve years ago, I had never heard the term “neurotypical”, didn’t know what an IEP was, and didn’t know how to stand up to doctors and school boards who thought they knew best but I knew my child, AND this wasn’t working.
      Now those things are a part of daily life. And nobody chose them; but we cope because they need us. You would, too.

      • franhunne4u January 19, 2015 at 2:58 pm #

        Trust me, Sara, I know my limits, I never saw kids as an option in my life.I have not changed my personal attitude to pregnancy and motherhood in 30 years.
        I am more the crazy old cat lady type of person.
        I still can pay my respects to those who are mothers. Like Phoebe my mother had 4 children. No, she had 5, but one died before the last two were born. Maximum living children in our home was not even four. Like Phoebe one of her children was disabled. Unlike Phoebe my mother could not cope with her other children and her oldest, disabled son. I grew up with my grandparents as a result, and when my sister came along 18 months later, my brother was sent to an institution, never to return to family life. Some of us are NOT up to the challenge. Do not try to convince me otherwise, Sara, you don’t know me, I know myself for 46 years, that is nearly half a century. I think by now I am pretty aware of what I can and what I cannot do.

  4. fivebeansoup January 19, 2015 at 2:32 pm #

    Phoebe, my mother used to say when overawed by a situation that she didn’t “know whether to laugh, cry, shit or go blind”. I try to aim at laugh but hey life is just life.

  5. Kelly D January 19, 2015 at 3:03 pm #

    “Our sense of humor is different than the average person’s. And by “different”, I mean, we’re kinda awful.”

    This sense of humor is the only thing that got me through a very long NICU stay. The nurses appreciated that there was someone around who could laugh with them when my daughter pooped all over everything….her chart, the nurse, some (no longer) sterile equipment, the wall, the floor….everything. It also may have helped that I was willing to clean some of it up. Also, the time that my son quit breathing months after he should have stopped doing that crap and the nurse said, “Oh, for f&%k’s sake, Emmett!” and I just cracked up laughing.

  6. Sandra M. Odell January 19, 2015 at 3:36 pm #

    Sounds kind of silly, but I found this post on Twitter and I don’t know whether to laugh or cry. You’ve described life with my youngest son, with both our children actually, and it is spot on. Everything. You walked into my house and wrote what you saw of my life, including the black humor and the normal. If for nothing else, thank you.

    • phoebz4 January 19, 2015 at 4:41 pm #

      Laugh. Always laugh!

      • Kary January 21, 2015 at 2:23 pm #

        My daughter is 6, still in diapers, possibly always will and when she is on antibiotics, she poops up a storm, but hey! shits happens! lol That’s my humor, it’s that or I cry sometimes!
        Everything else is spot on too.

  7. melelllan January 19, 2015 at 3:56 pm #

    Reblogged this on Trail To A Texas Trial and commented:
    All very true.

  8. saracvt January 19, 2015 at 5:01 pm #

    @frahunne4u:

    I wasn’t trying to “convince” you & I’m sorry if I offended you. I was merely trying to put forth the idea that no one wants to grow up to be a special-needs mom, yet we are. You kinda grow into the job.

    I think choosing to be childless is awesome, by the way–this planet is populated almost to the breaking point as it is. And I’m 45 myself and I THOUGHT I knew my limits, until I exceeded them, compelled to by circumstance. Everyone has their own challenges–this just happens to be mine. You probably push through stuff that would send me to my knees. 🙂

  9. Darlene Oakley January 19, 2015 at 6:34 pm #

    I hear everything you are saying. I live with Autism in my house hold. I have 8 children with 4 and a husband that are in the spectrum. my older girls have partners with similar problems and now my grand children are being diagnosed with it. We have struggled with main stream schools but don’t have other options. My youngest being 9 struggles the most. It is a constant struggle with teachers who don’t have a lot of knowledge. They are given aids but they aren’t utilized properly. I have already gone though your steps. My boys will never leave home as they can’t function at all in the world. I try but their is even less support available once they leave school. I am now putting in place options and support for my family now, should anything happen to me…It is a very lonely and exhausting life. I love my children and I wouldn’t change it for anything.. And yes you develop a warped sense of humor, the alternatives are worse. You don’t look for sympathy just understanding.

  10. Jessica Leads January 19, 2015 at 7:48 pm #

    Just found your blog and so happy I did 🙂

  11. vivienne January 19, 2015 at 11:20 pm #

    I care for 3 disabled children, smith-magenis syndrome, duchennes muscular dystrophy & shaken baby; didn’t plan on special needs but fell into it. I love the challenge of ‘how far can I get this child’ but the other 23hours a day- I struggle with 3 in nappies, 2 tube fed 1 wont feed herself, 2 wheelchairs & the body fluid leaks??? don’t get me started! but I love our special school & the teachers, it’s a whole different world in special needs with the nicest people in it, so glad I found this new world

  12. Darcy Pennington Arnold January 20, 2015 at 6:17 am #

    Phoebe, THANK YOU! You put into words what I’ve been trying to say to my daughter:). My granddaughter is nine, diagnosed with DS, and while she is extremely verbal, her comprehension is not at the same level. Isn’t it amazing that the very thing you pray for, and receive, stand in the way of understanding?

  13. Beth January 20, 2015 at 7:49 am #

    Regarding puberty, you might be interested in the book Teaching Children With Down Syndrome About Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals. I know your daughter doesn’t exactly fit to everything in the book, but there are some really good ideas about puberty and how to manage our girls with menstruaration and sexuality.

  14. Cindy Yunke January 20, 2015 at 8:00 am #

    Thank you for putting my life into words.
    Years ago there was someone I care about very very much saying… No… Insisting that every child should be in an inclusive school setting. I felt judged and guilty. As if they could do this better than me.
    My Noah will live with me forever. I’m happy with that. Although… This puberty thing can cut it out any time now.

  15. Jeanne Devine Bolewitz January 20, 2015 at 10:02 am #

    One of my FB friends posted a link to this article. We have quite a bit in common and after reading your “All about Maura” post, I realized there was a significant similarity between your Maura and my Josh–a love of Blue’s Clues AND Doctor Who (loved the photo of her holding the Tardis 🙂 ).

    Does Maura have a “Who’s Clues” tee shirt? It’s Blue dressed as the 11th Doctor standing next to a very Blue’s Cluesy version of the Tardis. Josh got his for his 12th birthday last Fall. I just looked it up on Redbubble and it’s still there! (I was going to include the link but I was afraid my post would be relegated to the spam pile).

    • phoebz4 January 20, 2015 at 12:13 pm #

      Ooo! That’s SUCH a good idea, I will look it up!

  16. marytormey January 20, 2015 at 10:29 am #

    I think people like you should understand that inclusion, does not work well, for perfectly normal kids. I think we need to plan the controlled demolition of many school that are just not suitable for children.

  17. a fan January 20, 2015 at 11:07 am #

    Reading your story reminds me of the book by Mildred Krentel titled ‘Melissa Comes Home’ which was her personal story of how she’d given birth to a daughter, named Melissa, who had Down Syndrome, back in the early 1960s, and how Mildred & her husband parlayed their upper middle class life style into creating a private Children’s Home for children with disabilities, called Melmark*. It’s certainly an interesting read & illustrates how others have been dealing with issues similar to yours, with grace & patience for many years as well.

    (*Since then though, Melmark has transformed more into a private Special Education school & workshop, than a residential facility, but in general its legacy continues to provide care & assistance to the people it serves.)

  18. Tanja January 20, 2015 at 1:49 pm #

    THANK YOU!!!! After a really hard day (and I mean top super unprecedented hard) day, your text lifted my spirits. Quite a feat. 🙂

  19. Jennifer January 20, 2015 at 3:31 pm #

    Spot on. Thank you.

  20. Walkersvillemom January 20, 2015 at 7:17 pm #

    Oh my! Thanks for that, I needed a good laugh. And, yes, “I get it!” (especially the “dark humor” bit) If you ever need a place to voice your truths, hop over to The Road We’ve Shared – I think you’ll see we’re all about more choices and sharing the realisms that come with this life. bit.ly/DsRoad

    We got lots o’ elephants over there. 😀

  21. Heather January 20, 2015 at 7:40 pm #

    GENIUS! Best read in a while!

  22. Kim January 20, 2015 at 10:23 pm #

    I love your post! Thanks for being real and honest. I sit across the table from many parents in those dreaded IEP meetings and I can sense the real pain, worries, and frustrations that lie just beneath the surface and I want to say, “I’m on your side! Just tell me how I can help.” Wish more time was spent on helping families connect, cope, and counsel each other. Keep speaking truth into people’s lives!

  23. Motherofmultitudes January 20, 2015 at 10:57 pm #

    Omg. Puberty. PUBERTY. I feared puberty for my multiply-disabled, blind, autistic daughter since she was….oh, 6. It finally came with a vengeance at 11.5. She is 13 years old now. And I won’t even begin to detail what a fiasco it was to attempt to teach sexuality and body awareness. Let’s just say that when she gets upset, she likes to repeat or scream contrarian statements while crying (“no! I don’t want to take a car, I want to take an airplane! No, I don’t want to be a girl, I want to be a boy!”). Contrarian statements when upset+ attempts at body awareness/puberty discussions= my mother walking upstairs to where I had a wailing daughter upset I was washing her hair, screaming “No! I don’t want a vagina! I want a penis! Boys have a penis! Girls have a vulva! Daddy and _____ (insert brothers’ names here) have a penis not a vagina!! I want Daddy’s penis!”

    As I like to try to make it through such public events such as grocery shopping without getting arrested and CPS called on me, let’s just say that was the beginning and the very swift ending “Care and Keeping of you” type discussions. You couldn’t give me enough alcohol to brave that experience again.

    Lesson learned #348,321….check

    • phoebz4 January 21, 2015 at 12:09 am #

      And this is where I’m happy that Maura’s just disabled enough NOT to understand such talks, so I don’t have to have them with her – LOL!

  24. Jane Scott January 21, 2015 at 3:14 am #

    Thanks,that about sums it up!Someone asked me what was different about bringing up my youngest,I had no words-but this about sums it up.We spent the weekend with a very constipated girl waiting for a poo.The whole weekend-that friends is my life.Then after all the things we did to move things along a weeks worth came in a few hours.Marvellous!!
    You made me laugh out loud and that is ALWAYS a good thing,especially when your house smells of poo and the washing machine is overheating!

  25. Eileen Stewart January 21, 2015 at 11:21 am #

    dear god I finally found someone who understands what my husband and I are going through-our child is smack dab in puberty and it has caused mental illness to worsen and intensify (as if caring for a child with cerebral palsy and severe developmental delays and executive behavioral issues weren’t tough enough) he had never been mainstreamed we’ve never had to fight for an IEP from the school his deficiencies are so overt to anyone observing us can clearly see-we’ve had our share of great special Ed teachers and assistants and therapists and support staff we are very fortunate compared to other parents of special needs kids

  26. MaryAnn Schiefen January 21, 2015 at 10:12 pm #

    Loved this article and loved all of the comments. I have worked in the area of special education for many years and have a 28 year old daughter with DS. I have always tried to be realistic with parents as to what the future may hold for their children but it is hard for them to understand that their child may not possibly achieve what they want them to achieve. But, I have also told them that it doesn’t stop us, as parents, to continually advocate and embrace the fact that they will reach their fullest potential, whatever that may be. We never know when and we should never put a time limit on it because they will surprise us all of the time. I am glad that we are able to discuss these issues and the thoughts that are so prevalent among all of us. And yes, a sense of humor, dark or not, is a necessity!!

  27. Martha January 23, 2015 at 10:16 pm #

    I am 71, very ill and we have a 45 year old son with Autism. He is high functioning but will always need to be supervised. He moved to a specialized residential setting almost 20 years ago. We didn’t want to do this but we are so glad that we made the decision and not the state. It’s easy for people to criticize you for decisions you never planned to have to make, but go with it. You’ve gained wisdom through your triumphs and tears that will help guide you in planning their futures. Work hard now for adult placement, get knowledgeable about community services and make friends with programs in your area. Laugh at the poop, cuss, cry and for us, God helped us all the way. Try to stay in good health and take tiny breaks when you can. Cultivate your friendships including some time spent discussing something other than your child. Hard, but necessary. You are doing the best that you can do at this moment. Bless you all

    • phoebz4 January 23, 2015 at 10:37 pm #

      Thank you Martha! I was just reading an article about parents with a 50 yr old child with special needs, who were finally moving her to a residential setting so they would know she was in a good place before they were unable to take care of her. It is something we’ve discussed as well (okay, so last time, I may have burst into tears, but I’m pretty sure that’s normal, lol!) We’ve had the talk with the older three, who are accepting of the fact that they will someday “inherit” Maura in some capacity, even if it means they make sure she’s in a good place. It’s a bit terrifying to have to think about, but we have addressed it already a few times (to the point of “If we can’t find a good enough place, we’ll figure out how to make one dangit!”)

      All the best to you!

  28. specialprayers January 25, 2015 at 6:38 pm #

    Agree with everything except the puberty comment. We made made it through and I’m still not in a padded room. But ADULTHOOD is scarier and harder.

  29. internationalelfservice January 29, 2015 at 5:09 pm #

    Such a great post and how refreshing to have such an honest view.

    • internationalelfservice January 29, 2015 at 5:10 pm #

      Your girl sounds so gorgeous!

  30. Hillary Savoie February 15, 2015 at 6:07 pm #

    Thoroughly enjoyed this post. Thank you for sharing. I’m right there with you on a number of these! Although since my girl is only 4…I am trying not to think about what puberty will bring yet…oh and she is an itty bitty bub, so, you know, small blessings for my back!

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