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I might as well.

sc 3rdOhellIn a week where Laurie’s guest post was the only thing considered uplifting, I might as well see if I can run off all the rest of The M3 Readers by going on a brief, illustrated rant about the third circle of hell in particular, but a systemic problem in the United States. While the prohibition to politics is not lifted, I expect some of you to get the wrong impression and think this is a governmental issue. It is not.

For the newcomers, some introductions are in order.

First, meet the Man Cub (AKA Little Bear).

Boy with autism

Next, meet Little V. She comes by the name not for her size, but because my daughters’ names begin with the letter V. She is the third, hence there are also Big V and Middle V. You all met Tiny V on another post.

IMG02498-20130210-1858

Nothing so unusual, right? Right. Except they both have autism.

Language

Man Cub is non-verbal. While he can mechanically say around 100 words (and 100 numbers), he has no connection between the words coming out of his mouth and the meaning. Little V can say polysyllabic words and mean them, but has no concept there is a difference between over and under.

Children on the truckThey have a language, like twins, which I do not understand. They use it to communicate to each other. Occasionally, Little V can translate for me. Most days, not.

Instead, Man Cub growls, grunts and tsks. Little V goes on long dissertations which amount to soliloquies of either mostly nouns or a bunch of verbs with 27 extra prepositions, used incorrectly.

Neither of them understands questions. Man Cub cannot answer questions, although he will gladly ape it for you, since that is what he is taught in speech therapy: to have speech, not meaningful communication. Little V can ask, “Why?” When you ask her “Why?”, she believes she has answered the question as long as the response (even if it is a repetition of the question) begins with the word because. See statement about speech therapy.

Sensory

Both of them have sensory input dysfunction inherent with autism. Man Cub needs pressure and compression therapy not to spin in a circle until he falls down dizzy. Oh, and he eats sand. Chews and swallows. If I hear one redneck, dirt-eating joke, I will light you on fire.

Little V is content to rub her head on the carpet until I cannot get a brush through her hair to get her extra sensory input. Or she will clap, sing, bang the keyboards/drums, whistle (with her mouth or the recorder), clack castanets, ring bells or make some other sort of noise to satisfy the need for additional sensory stimulation.

Smart

My children are both very intelligent. By testing standards, they are both retarded. Do not get your knickers in a knot. It just means developmentally delayed according to accepted standards. It is true, by the way. The tests gauge whether or not a child can communicate knowledge verbally or in a fill-in-the-bubble way indicative of the ability to communicate in ways “normal” adults understand.

Where you get tripped up is the things my children can do which other children cannot.

allen head screwDo these frustrate you? Not Man Cub. He does not require an Allen wrench to remove these to disassemble a.n.y.t.h.i.n.g. He can take things apart without breaking anything.

He is also a direct descendant of Houdini. He can escape from anywhere. Once, he got out of our hotel room (900 miles from home), stripped nude once outdoors (It was humid.) and went to IHOP. He sat down beside an officer and picked up her chocolate milk, helping himself because he cannot speak to ask if she would mind. It was 0306 when I got out of the bath and discovered him missing… again.

She wants me to teach her Beethoven's 5th symphony.

She wants me to teach her Beethoven’s 5th symphony.

Little V plays the piano. 100% by ear. She listened to me play Für Elise. Three times. She played the first four bars (treble and bass clefs) and demanded I play the remainder for her so she could learn it. She heard The William Tell Overture on a cartoon, proceeded to the piano and played the first two bars. She then concluded I should buy her the Blue Ray of said cartoon so she could learn the remainder.

She also animates. It started with SpongeBob but was thrown into high gear when she met the Wombies. She created her first six panel storyboard at four. Like her mother, she writes the way she speaks. Sigh.

And?

There is never a dull moment. Not a single solitary one. Neither of them sleep through the night. They are not on the same schedule. (That should help most of you understand why it seems I never sleep. I do not.) Both of them have sensory problems with food and will only eat certain foods at certain temperatures at certain times based on their growth cycle. There is more, but I believe you are getting the idea what a typical day at La Maison de Dwyer is.

When?

Ticking ClockI homeschool. I take them to (and participate in) speech twice per week. They go with me everywhere. Shopping. Banking. The park. Everywhere.

This morning at 0115, Man Cub came into the bathroom, stripped down and proceeded to put his foot into my bath water. It was too hot, so he grabbed the couch with Beau. I am never away from my children. Ever. In the last eight years, I have been away from my children a total of eleven days. They have been on every vacation, almost all of my doctor’s appointments and shy my stays in intensive care have been with me (within 100 feet of me) since birth. Let me put that into perspective.

Hours children spend:

  • at preschool: 1,440 (60 days)
  • at school by age eight: 4,806 (2+ years at full time job- 200 days)
  • at aftercare/daycare: 1,080 (one part time job year- 45 days)
  • with babysitter: 1,248 (52 days)
  • with grandparents/family: 2,496 (104 days)

For a grand total of 461 days or one year, three months and a couple days. I have had eleven days. I am a full time parent.

Respite

I need this.

I need this.

It is common for parents of special needs children to get assistance with respite care. It is where full time caregivers get a break for things like doctor’s appointments, haircuts, a nap. After eight years, I was willing to take a vacation, not only from work (which I never do, really) but also from being a parent… at least for a few hours.

I decided I would apply for a grant which is given to caregivers across the country which is funded by private and public funds. Can you guess what the next paragraph is going to say?

Denied

I have been denied because I do not qualify. Reason? I am too young.

To their estimation, at my age, I should be able to work and afford to put my children in a care program so I can work, through school (which the state is unable to provide despite every citizen having a right to FAPE), therapy (which no one provides where I live), transportation costs for all of it, supplies, household expenses and medical care.

While I am at it, I should be able to afford to give myself a break from my responsibilities. After all, it only costs $52 per hour, per child. (And to get anywhere the commute is 2 hours…) Better still, why do I not get my family (who lives 900 miles away) to help me? (Calculating costs of airfare, hotel, food…) What question ripped it for me?

Why doesn’t their father help?”

30437_10150218235040327_5467277_n

Because the state frowns on leaving handicapped children with a penchant for starting fires in the care of the spirit world.

If you ever wondered why parents of special needs children make the choice to institutionalize beautiful, loving, talented children, stop. They do it because the only people willing to help them are family, when they have them. Certainly earning your living to provide such assistance is not enough to make one care whether such job is actually done.

If you were wondering why I call Kershaw, South Carolina the third circle of hell (and do not get the Inferno reference for gluttony), it is because the people with jobs here are gluttonous with the salaries. They take and consume them without ever once doing the job for which they are paid. It is no wonder the average citizen here is 45 pounds overweight. The most exercise they get is from the car to the desk where they play solitaire and post to Facebook on the company Internet connection.

I cannot wait to get out of here.


When you share this post, please use the hashtags: #autism #respite Thank you for sharing The M3 Blog.

I would ask questions as I normally do, yet I am left with the conundrum of having no knowledge I did not impart in the rendition. Help me out. I am gobsmacked.

© Red Dwyer 2013
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41 Comments

  1. I can’t imagine how tough this is. Growing up I was the primary care giver to my brother wirh MDso I know a little about someone being dependent on you but tha communication must really be a strain. I will keep you in my prayers.
    Bo Lumpkin recently posted..Cardinals ChoiceMy Profile

    Reply
    • Thank you, Bo. The communication thing is bizarre. We had a silent language for so long. Speech therapy was the only answer because they were both mute. When the speech pathologist first came to our house, she was amazed at how well we communicated with no words at all.

      The main problem is Man Cub cannot say, “This hurts.” I have to be able to tell from his movements and expressions whether he is in pain and to what degree.

      Reply
  2. Oh, I wish you were closer. I’d take them for the day shorty would have a blast having someone to run around with and a day with someone that spoke her language would tickle her to death. Although she won’t do much for their speech, her pronouns are confused and her word order gets reversed, but you have to admit it’s cute when they get the words mixed up sometimes.

    Reply
    • You are definitely a stop on my next trip home. We are going to let them have the yard for a few hours.

      The only time the mishmash is funny is when it really really really needs to not be… like when I want to throttle her for something she knew better than to do in the first place. xxx

      Reply
      • Wear running heels just in case, we’ll start them at the very back. They should fall down exhausted before any of them can escape out the front.

        I’ll try to have the grass cut and construction materials out of the way of curious hands. I’ll hide all the climbing things too. xxx

        Reply
        • Climbing is good for them… as long as it is not my cabinets. 🙂 Between the three of them, my guess is it would mostly be circles anyway! xxx

          Reply
  3. I am not ‘reblogging’, I am however, linking this in my Redhat zone.

    I love you. I love Miss V and sometimes have wonderful conversations with her.

    Vacation time has to come soon. Duluth here we come, I have a favorite restaurant in Minneapolis and you and I are eating dinner there Saturday night.
    Valentine Logar recently posted..FTP 10 AshamedMy Profile

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  4. Egad! You are definitely a force of nature to keep up with those two (very cute) forces of nature!
    So does little V get caught up in the piano and stay there so you at least have some idea where she is likely to be?
    Are you relocating soon>
    El Guapo recently posted..Friday Foolishness – Rechargeable EditionMy Profile

    Reply
    • Yes, she is easy to track in the house. All you have to do is listen for the music or the sound of race cars. She loves to play Need for Speed on the PlayBook. As to relocating, I have submitted a boatload of pictures to the realtor and will start showing the house next week. The moment it is sold, I am POOF!

      Reply
  5. I don’t think I could survive for long doing what you do. At least with two parents, or with grandparents near, you would be able to get a break once in a while, and no matter how much you love your kids, you do need that occasionally.

    I’m glad that Little V has found the Wombies inspirational.
    Binky recently posted..Waterproof First AidMy Profile

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    • I know of very few people who do what I do in the personal or professional arenas. I am looking forward to going home. All of my children love their grandparents. Even taking just one for a while is a good thing.

      Reply
  6. Dear Red,
    I can’t wait for you and your two little ones to move where you want, to be near the people you need, and for once to have the support that can be had. The denial of the grant is downright cruel to you. I hope you have an appeal coming to you. Your children are precious, I have spoken to Little V on the phone. They are both of high intelligence, with a way to communicate which is their own. They are very lucky to have you as their mother, and I hope the respite you need comes soon.
    Gail Thornton recently posted..Guest Interview about The Regret of a Flower, selected poemsMy Profile

    Reply
    • More on this at 1500 today. I am feverishly working to get to the place where we are ready to go. I have a few more things I absolutely must do here before we are ready to leave. I am looking forward to home in a way I have not in many years. xxx

      Reply
  7. Gobsmacked? Total exhaustion does that; you have nothing to apologize for. God bless you Red, it is little wonder you are stressed at times, and reading this make one wonder how you survive. It sounds like Little V is a piano savant; to play like that is no less than amazing. Your children are beautiful, brilliant and special.
    Denial of help by your ‘questionable social system’ is totally unacceptable. It is definitely time to move on. Best of luck.
    raymond alexander kukkee recently posted..Book Reviews Heating Up: The Fires of WaterlandMy Profile

    Reply
    • I do not apologize. I cannot take responsibility for the idiots of this world. They fell from a rotten tree. Perhaps now, you have a healthier appreciation for what I mean when I say I am tired. It is a different animal than the same sentence from someone else.

      Little V is savant level with music. She has an electronic drum set, various percussion instruments, plays piano and is after me for a new guitar. Her last one was for toddlers, and her brother disassembled it. Le sigh. When we move, I will get her guitar lessons, as I have no interest in playing guitar. Violin, that is another story. Fortunately, I still have a violin in her size and mine to teach her.

      Reply
  8. Red, I don’t even know what to say. If nothing else you have given a very clear picture of what Special Needs families encounter. I think ‘we’ tend to forget that education is not the only special need. I know you didn’t post this to get accolades, but they are due. The power and strength and fortitude you have for your family is undeniably a super power. Like someone else said, I could not do what you do.
    C. Brown recently posted..Touching BeliefsMy Profile

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    • It was shocking for me to find out the teachers were given breaks from the children when they only had them for six hours (in the case of my children, only three hours). It is incredulous to me those being paid to care for children deserve a break where the parents, who have the other 21 hours in a day are left on their own to fend for both themselves and the children.

      I rarely share about the struggles I have with my children because I am not looking for a pat on the back or for pity. I want more people to understand what life is like for the children who misbehave in public according to a standard which is already skewed against them. How ignorant is it of us to gauge a child’s intelligence merely on how well they come up (and in many cases down) to our level? All of it makes me ill. xxx

      Reply
  9. I’ve told you once before and will tell you again. “you are amazing…super mom/woman!” I know I could not last a week, maybe a even a day doing what you do. I commend you, Red!
    I do wish you could take a vacation…I real one.
    xxx
    Deb recently posted..Fraz Has a New Beach House!My Profile

    Reply
  10. Someone said something about my niece in a store and how couldn’t she be controlled or made to behave. (she was looking at a cup of pens on the counter and wanted [needed] to organize them by color, length, and type) She really wasn’t hurting or disturbing anything or anyone except the other shopper.

    “Why should we control her when ignorant people like you can’t control their mouth.”

    Stupid and ignorant people abound…
    MJ Logan recently posted..Puppy Tail UpdateMy Profile

    Reply
    • And they have the audacity to reproduce and think others should be sterilized. Ugh. Your version is so much nicer than mine. Much.

      Reply

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