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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 wordĀ 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), clackĀ castanets, ring bellsĀ 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 FĆ¼r Elise. Three times. She played the first four bars (treble and bass clefs)Ā and demanded I play the remainder for her so she could learn it. She heardĀ The William Tell OvertureĀ 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 theĀ 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.

Ā© Red Dwyer 2013
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41 Comments

  1. You are amazing. And now I know why I have been inspired by you from the first day we met. You are strength and love and EVERYTHING. Now – I have some shit days in my world, and I kid you NOT…I have quite had the conversation in my head, ‘Red does this with her eyes closed while writing a book and raising two beautiful non-verbal autistic kids. I need to shut up and suck it up” – granted I bitch and moan in my blog…but you TRULY have made me a better mother because you are that amazing. I know that doesn’t help when you need sleep, a moment of sanity and help the world doesn’t think you need…however, it is true nonetheless.
    Candy recently posted..Re-Opening the Closed DoorMy Profile

    Reply
  2. So sorry to hear you were denied respite care. Such responsibility you shoulder; I can’t imagine having to go that alone. You have my deep admiration.

    Reply
    • Thank you, Carrie. I am not looking for a pat on the back. I really want more people to understand there are worlds next door which are not what they appear on the outside. Thank you for stopping by today. xxx

      Reply
  3. Beautiful children, beautiful amazing mother. Praying that your house sells and you relocate where you can take some much-needed time off.

    Reply
  4. Your children are gorgeous. One never knows what goes on behind closed door. You are a Wonder Woman. Wishing you expediency in pulling up stakes and getting home. Keep well, Red.
    Tess Kann recently posted..Letā€™s Cut the Crap!My Profile

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    • The realtor will be here tomorrow for the photo shoot of the house. I am going to get out of here. Promise. xxx

      Reply
  5. Those that deny this grant need to get off their asses and share a typical week or two with you and your children, live the life, see the reality for themselves and then cut the red tape BS that is truly and unbelievably unfair.

    You are a diamond Red, in many ways šŸ™‚ xxxx

    Reply
    • I offered to let them come test drive my house for four hours to see if they would change their tune. As a wordsmith, I am amazed at the complete lack of anything resembling reading comprehension most of these ppl possess. :/

      Reply
  6. QBG Tilted Tiara sent me. I am so sorry about your plight. Getting the government to do anything or help in any way can be maddening. The bureaucracy alone, I imagine. But to not offer you help? That’s ridiculous. Though I love your sense of humor that shines through your frustration, especially the clever line that reads, “Because the state frowns on leaving handicapped children with a penchant for starting fires in the care of the spirit world.” I guess that would be true. Sigh.

    Reply
    • Fortunately, my inner snark also never takes a day off. As I said in the beginning, this is not a governmental issue. The organization is a 501(c)(3). It is their sole purpose to give away the money.

      Welcome, Monica. Stop by the Green Room (up at the top) and leave a link to your blog. The M3 Readers would love to get to know more of you. Thank you for stopping by.

      Reply
  7. In terms of the kids, love the way you shared the wide-range of characteristics that make them who they are. Besides your strength and dedication, you are an outstanding spokesperson for the cause. Well done!
    Frank recently posted..On a Happy TuneMy Profile

    Reply
    • Thank you, Frank. Over the years, I have been really turned off by most of the spokesmen for all of the causes. Everyone is quick to bemoan the shortcomings, but are equivalently ardent to hide the benefits and joys. Autism is no less grey than the rest of the world. My children and I have an inordinate amount of fun. Thank you for stopping by today, Frank.

      Reply
  8. Hi Red, I too am gobsmacked here too Red..

    Working with adults with learning difficulties I know only to well the stresses, so again your courage in coping, home-schooling and the rest of what you do alone is commendable Red.

    If you can appeal, then I would appeal.. often the Red-tape here in the UK at least is set so that they make it difficult .. Persistence is the key, and there should be a route of appealing this decision

    Thinking of you… Big Hugs Sue
    Sue Dreamwalker recently posted..Shaking Ourselves Awake.My Profile

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    • I have. It is all working much better now. This is not a governmental agency, which is why I was so angry at the entire mess. Their sole purpose is to make these things happen for families precisely like mine. Fortunately for me, there were just the right number of angry people at this post to get word to someone who cut the tape. xxx I appreciate your faithful support, Sue. <3

      Reply
  1. Red Hat for Red ā€“ QBG_Tilted Tiara
  2. Opinions in the Shorts: Vol. 174 | A Frank Angle

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