On this Blog, on my Facebook page, in any e-mail or conversation, -- I am very open and honest about everything in my life. The good, the bad, and most often as others seem to take that honesty lately, - the ugly. I simply know no other way to live. Having a son who is non-verbal and who has autism, the real kind, not the cute Rainman kind, has taught me to be nothing less than real. My son knows no other way to live, and therefore that's how I choose to live.
Granted, I make mistakes, do not live politicially correct, and many in my own Christian community probably frown on my forthcoming'ness. Be that as it may. Refer to opening paragraph for explanation.
And so for this month of April, National Autism Awareness month, I have upheld that standard of honesty, no matter how imperfect, no matter how.... inappropriate.
I'm just tired.
Tired of cutsie-campaigns for this month that do nothing but contribute to the crap.
And it makes me down-right cranky!
I'm tired of people thinking "Life with Autism" is something to just be aware of or accepted.
I'm tired of people thinking that if we all just "Light it up Blue" or "Walk Now" or any other cutsie-campaign like that -- the problem will be solved.
Well it won't.
You can light it up blue all you want, but it will take green to put that awareness into action. Not giving green by walking for those who light it up blue, but giving green to those local autism organizations and programs who actually help families all year round, and not just take from them and leave, one day a year.
This picture above can seem like a "cutsie" picture. But it's anything but. It represents what this month represents. Autism. Awareness.
My husband and "other son" are at the Blue Lagoon in Huntsville, TX for Matt's Open Water Diving Certification. While I would have loved to have gone with them, I couldn't.
Autism awareness fact: Many families have "other" son's. "Other" daughter's. "Other" children. You know, those "other" children who are seen, who are there, but who are lost in the demands of autism. Those who like my "other" typical son did for two solid years, which was to sit in the back of the car early mornings and late evenings, with his "cutsie cup of cereal" as we took the child with autism to special schools an hour away and special therapy appointments after a full day, etc. The ones who give you Senior Graduation Announcements one day, causing you to sit there staring at them wondering how the hell that happened. When that happened. Guilt-ridden that finally in the life of the child with autism things have calmed to controlled chaos, instead of the uncontrolled chaos of the early years, and that you can finally spend time with that "other" child and get to know him. But then Wham! the Graduation Announcements stare at you as if satan himself is sarcastically sneering at you with a smile, saying ... it's too late.
Autism awareness fact: No respite, no trained attendant care provider to call upon for a day. And because of the non-cutsie brand of Autism Brandon has, it is not practical to take him with me, unless all I want to do is chase him away from the cliffs where he could fall in the water he's so enchanted by, and then drown. Drown because I can't seem to teach him how to keep his mouth shut in the water, it's too powerful a sensory thing for him to 'feel' the water with his tongue. That, coupled by the fact that he has spontaneous, unpredictable seizures, - and our every 45 minute "habit training" toilet training regimen, - and you see further why bringing him would not be fruitful. It would be nice to all be together, but then once again, the attention is on the child with autism, and the "other" child is just ignored. Again.
Autism awareness fact: My son is 17 years-old and still cannot be left alone. He requires constant supervision. Every second, every minute, every hour, every day, every week, every month, every year, for his lifetime. Parents with my son's non-cute kind of autism, might never get a chance to 'enjoy' empty-nest. 'Enjoy' their leisurely golden-years....
So, while it's just Brandon and I at home alone for yet another such weekend of "tag-team-family" -- I thought I would do some cleaning. Top on every family's list for a fun-filled weekend.
While I was downstairs cleaning one bathroom, Brandon apparently wandered to the upstairs bathroom that was inadvertently left unlocked.
Autism awareness fact: Families live in perpetual lock-down. Cabinets locked, Refrigerators locked. Stoves locked. Windows locked. Closets locked. Bedroom doors locked. Bathrooms locked. Windows locked. Doors locked. Gates locked. Pools locked. Garage doors locked. That's not cute by the way, if you were smiling at that. We're not parents, we're freaking custodians walking around weighed down by ginormous keychains with keys to unlock everything. Again, that's not cute. Try living your life wondering every waking moment if you remembered to lock something. Try living your life having to unlock something to get anything. Try living your life with the guilt of being the one who perhaps in a moment of normal-ness which is not a luxury autism families can have, left the gate unlocked and the child wandered out and got lost. Or left the bathroom door unlocked and the bathroom and whole house was subsequently flooded.... (our house has been flooded five times now due to such 'normal' forgetfulness)
So when I heard the water running, I went upstairs. And the picture you see, is what I saw. Brandon, drawn to water, standing in the shower. Now, while I did have a chuckle at that since I choose to laugh versus shoot myself, --- it was not in fact, very funny, or cute.
Autism awareness fact: Children with autism are inextricably drawn to water. I'm not sure why, but the numbers of children with autism who have wandered off and drowned in someone's pool, a lake, etc -- are ginormous. Ginormous.
His non-cute brand of autism doesn't allow him the reminder to maybe take off your clothes first. His non-cute brand of autism doesn't even tell him until after the third-degree burn because of his sensory dysfunction, that the water is on hot and will burn him.
Autism awareness fact: Sometimes despite how many hours of Applied Behavior Analysis you've applied, they don't ever remember to take their clothes off before getting in shower. So no, autism is not bad parenting, lazy parenting, or no parenting. Sometimes despite how many thousands of dollars and thousands of miles you've spent on getting help for your child, your child is still autistic. Better, but still autistic. And that only covers those of us who do have a house to mortgage five times for those treatments. Those of us who do have insurance and are lucky enough to have found the non-autism code that gets autism treatments paid for. What about those who can't afford any intervention?
His non-cute brand of autism doesn't tell him to tell mom if he wants to play in the water, so I can be there with him if he has a seizure and falls backward in that tub with perhaps water pouring in his mouth thus drowning him. We actually did experience that non-cute kind of autism a few years ago when he was playing in the backyard in the sprinkler and had a seizure, fell backward, where the water from the sprinkler filled his mouth, throat, lungs, - essentially drowning him. The saving grace was God who allowed us to find him, do CPR, and revive him.
Autism awareness fact: Autism is a deadly disorder. I'm haunted by that anytime my son wanders from our locked-down house, anytime he's not supervised and could potentially run in front of a car he doesn't know to look for, anytime he has a seizure, and anytime he's near water.
So while I do think it is kinda neat to see pictures of all these buildings being lit up blue, it does little to highlight why we're actually doing it. It makes this month of Autism Awareness seem nothing short of cute.
And autism is many things, but cute is not one of them. It's anything but special. It's irritating. It's annoying. It's heartbreaking. It's enlightening. It's empowering. It's educational. It's Spiritual. It's both heaven and hell.
Autism awareness fact: Autism, again, is not Rainman. It's not special, nor is it a gift. The child may indeed be special in the blessing, the child is indeed a gift from God, - but make no mistake, the autism part isn't. It's not special to be the one home alone on a tag-team-family weekend, going stark raving mad by every light in the house being turned on and left on, by the incessant hummmmmmm of a child trying to re-set his internal rhythm disrupted by for him, seizures of the past week. It's wanting to sit down and watch your movie or read your book, but instead having to rewind Barney over and over. It's not being able to start, let alone finish a conversation with the voices in your head since there's no one else here to talk to, all because of the constant redirection needed. "No hands when eating!" "Let's go to potty time!" "Turn off lights!" "Shut door!" ....
Autism awareness fact: Because of all the autism awareness facts listed above, and a whole slew more that I could add and add and add, it's no wonder why the divorce rate of families living "Life with Autism", is so stinkin high. Heck, the thought has crossed my mind a time or two. I mean really, for many, that would be the only way they get a break! Get respite! By the child with autism going to the other parent's house every other weekend!
But no, thankfully an equally compelling autism awareness fact is that that which does not kill you, makes you stronger. Same is true for many marriages. The Autism, as in our marriage, highlights what truly matters in life. Making you focus on your faith, on your God, and on what a marriage is more than anything... a commitment. For better or for worse. For richer or for poorer. In sickness and in health. (Thank you Todd for honoring that commitment, even during the times when more than our love and my hotness, that commitment is what holds things together.)
I think that's why I love and fully support the National Autism Association so much.
They "get" autism. They "get" what Autism Awareness month should mean. Their Public Service Announcement for Autism Awareness is anything but cute. It is provocative. It is real. It leaves you feeling like you were aware of a tragedy that you must do something about. And while doing that, it shows us perhaps the most profound thing of all about this month: Hopeism.
The Hopeism all of us in this tight-knit community of autism share. The grit and determination that despite all the sucky and tragic things portrayed in that video, and that we each live with daily, there is hope.
We are not alone.
We will never give up.
It's what gets me through each day.
It's what puts into perspective this month of National Autism Awareness.
Please watch this video:
National Autism Association: Never Give Up
While the individual with autism may very well be cute, as my son is extremely ginormously cute, his autism isn't.
While you may think you are helping the cause by lighting something up blue, or wearing blue, or giving your green to that organization that's lighting it up blue, you're not.
Watch that video, and then find a local autism organization near you, in your community, who will use your green to directly help a family, again in your community, who needs some help, and the Hopeism that help provides for.
Thank you.....
Michelle M. Guppy
24 comments:
Wow! I feel I could've written this! It's the things I don't say I guess. Unlike you Michelle, I have not been brave enough to share my pain. The last 20 years I have virtually hidden away with my family's pain and never ever believed that anyone would try to understand! I guess you have more faith in people than I do. This IS THE TRUTH! This IS how we live! I guess I became bitter when others called their children autistic when they had a speech impediment. When some speech therapy would change their chlld saying, "wabbit" to rabbit. sighhhhhh No, not the pretty, easy rain man kind of autism at our house either. I am always amazed at that movie, Rain Man. They portray his disabilities as so severe! And yet, I could only pray for that high of functioning, minus the counting ability. LOL I guess it's all perspective. My perspective usually comes from the bathroom floor while I wait for Britton to finally come out. He sits on the toilet as much as he sleeps, mostly in pain! Well I'll end todays rant, or I better start my own blog. LOL Love you Michelle, I have prayed for your family for many years.
Teresa
Michelle, what I love about you is your God-given talent to "tell OUR story." You are the very best Ambassador for all parents everywhere of children living with Autism. You and yours will forever remain in my prayers.
As always Michelle you say it so plainly. Though my James doesn't have autism, his intellectual disabilities make life in our house lock down also. And he too requires that constant supervision, so in his kidney failure he doesn't eat something he used to love but now can't have. We also have to watch that he has a regular bathroom schedule, not so he doesn't wet, but so that his poor bladder doesn't get so full that it explodes, which also of course leads to infections. And infections are frowned upon by the Transplant Team; too many mean no transplant. It's great when a person gets it. Thanks for all you do to keep the word in front of the public; you truly are a hero.
thank you for having the courage to write this. I may refer to it, with your permission in my podcast, Autism Warriors. You can email me with your permission please at joeybearsmom@aol.com. I would like to read excerpts from this blog so that people are reminded, as you say, that there is a non cute autism and it is not seen in the public media. It is autism awareness month and that should include the families whose lives are like yours. please email me when you can. I will be thinking about you and your son.
Pam Mari
Michelle, Thank you for telling it like it is. There are those of us who do not know what living with autism is like and need to know the dirty facts. My prayers are with you and your family.
Well said. We also have to keep our son under lock and key. I wish someone would make the general public aware of what true autism looks like. I am tired of people thinking that autism is like Temple Grandin. If we could only be so lucky. I am not saying she didn't have her issues, but it is obvious that she was very high functioning. It's too bad we don't have a celebrity like Jerry Lee Lewis out there supporting our cause. He at least had the children out on stage with him for the world to see. We need to make the public aware of the true struggles that we face on a daily basis.
Cristine
Undoubtedly this is probably the best blog i've read thus far. I, like you, am brutally honest about my son's autism (he's 16). It's NOT cute, it's NOT a blessing. It's something we ALL have to live with and adapt to on a daily basis. And, it's NOT easy. Thank you for sharing your story. I enjoyed reading it. Here's to hoping that you get a moment to yourself to catch your breath :)
I am glad you have somewhere to vent. I disagree with Christine, however, that having a high functioning is better. Wrong! Imagine sleeping with one eye open, watching your back for the anger to surface and that child knowing what a knife is or any other sharp object. Want that now?! Didn't think so. We all, autistic community, have our struggles but don't wish for the greener pasture, it is not greener. It only has different, sometimes harder, struggles. Praying for strength for all of us as we journey through this life.
There should be a place for us all to "vent" and support each other like this.
Bless your heart Michelle for taking the time to spell it out plainly. Because the media definately does not have autism right. All the media wants to see are the poster children. My child is in the moderate autim range, and yet I completely agree with you about just about everything. This is not cute and I get so fed up with people claiming to have the answer. Because I sure as heck don't and no specialist I've ever been to had the answer either. I don't have the money to try every treatment out there. I can't move away to a better state with better service, not that that would help at all at this point. My 18 yr old is semi self-sufficient in some ways,yet he will never be independent. We've made slow tedious progress that seems to have come to a standstill. Verbal yes,self help skills quite low..I taught him to shower independantly by using the PEC system and tape picture to the shower wall, so that is huge progress but he does nothing unless prompted by a written schedule or continual...repetative...over and over again requests and instructions (not even fix his own sandwich. it doesn't even dawn on him to eat unless he is told its time and I do try to make him to it himself but he still doesn't initiate anything other than raiding the snacks), social abolutely not and resists it with a vengence. Me trying to get him to participate and enjoy life, when all he wants is to be left alone. He is truly happy alone. Im TIRED OF BEING ALONE! I want to be part of something. I want to go places and not wonder if my son is being taken advantage of or being a disruption to the general public. Often I feel an outcast in special needs social groups because autism is not down syndrome. Those kids are so happy and cooperative, have pride in their accomplishments and want to socialize. My son could care less about competition, ripped up all his therapeutic horseback independent riding ribbons, has no sense of accomplishment, has refused to participate in special olympics after being forced to do so by me for 3 years. And we've tried every sport or activity in our local area. He resents it with a passion and just wants to stay at home on the computer. He has issues with anger and compliance, I give him options and he chooses. I make him choose something because staying at home being a hermit is out of the question, so he chooses and argues every week when its time for rowing. He is quite capable and has learned to row in those long rowing shells. He has one assistant n rows in a two seater, but the running joke is that he will only be on the water for a maximum of 13 minutes before he wimps out. He has no stamina or drive to continue, he always takes the easy way out. I HATE IT SO MUCH! He is so physically capable, its this autism causing him to hate any interaction with society. He goes because I make him, complains half the time, I bribe him or threaten to ground him in order to get participation, then he only halfway tries. I feel hopeless all the time. He could be lured into a strangers car by a cute puppy and hand over his entire wallet.
Also, I take him to aspergers groups even though he is below their functioning and has the full autism diagnosis. And from those close friends, which I've made for him because sam so far cares nothing for friends-He still parallel plays. He has people he knows and only calls one of them his friend, I can assure you that aspergers is not at all easier and it often makes me feel safer knowing my son has the autism diagnosis. He doesn't get bullied at school,his feeling don't get hurt if someone doesn't be a friend, he is not forced into inclusion classes and had to struggle with new teachers year after year who don't have a clue as to how to modify the curriculum to make it possible to learn effectively. The IEP may have wonderful modifications but real day to day life is nothing like they promise. Middle school and high school in our county don't provide much for those who fall inbetween. Your child either has to be in the CDC classroom(special ed) or in inclusion. There is no inbetween and kids are left underserved. I especially love one of your last paragraphs. Living our life, so secluded by autism brings us to the point time and time again, where we are face to face with God. We can allow ourselves to become bitter or allow him to change our perspective, to take joy in the simple victories, to continue placing our lives in His hands to teach us and use us in whatever way that He chooses. This is why the scripture tells us to renew our minds daily..
2 Corinthians 4:16-18 Therefore do not lose heart, but though our outer man is decaying , yet our inner man is being renewed day by day. For momentary, light affliction( and yes ours is light compared to having your hands and feet pierced by nails and hung on a cross) is producing for us an eternal weight of glory far beyond comparison, while we look not t the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.
And Isaiah 40:29 He gives strength to the weary, and to him who lack might he increases power.
Except for the seizures, I can relate to your writing Michelle. My son is going to middle school next year & it has finally hit me that he has virtually no social interaction. However, as Karen stated for her son, he does not care about it except w/ a select few. And FYI, my son has DS as well, and we're not sure who started the ugly rumor, but kids w/ DS are not always happy & sweet and want to do their best. My son has had an AAC device for the past 5 years. Another example of non-cute autism? He still does not know how to use it to communicate b/c every year no one at the school really knows how to use it. We start over EVERY year. Another non-cute autism fact - I'm one of those marriage statistics: divorced 6 months ago. His father does not know to use the AAC device either (gives you an idea of why we divorced). Thanks so much Michelle for being a voice for all of our children, for us as parents, in addition to being a voice and advocate for your son. You are truly gifted and we are blessed because of it. As always, praying for you.
Thank you. I remember your name from lots of stuff I was researching when my child was first diagnosed. He developed great. Little did I know, it was genetic and I decided to have a second child which is what all typical second children are times autism. I know how you feel. Our children will be with us forever and we love them. We won't let them be institutionalized but it's hard. There are great moments and not so great moments. I always remember Holland. Peace be with you.
Tina, Belpre, OH
I apologize to kelly and others affected by DS. I have seen those kids misbehave too. It just I see mine maintaining such a consistantly negative attitude and he is typically always the one arguing or ignoring instructions, being rude and non-compliant even within our disabled groups.
wow! I cant tell you how this touched my heart! My son is also Autistic, non verbal. Low functioning end of the spectrum, or what i call the diagnosis without a label! I always get a little frustrated because I always see post and stories about the high functioning kids! no one talks about this side of the spectrum! My son has same charecteristics and issues your son has minus the seizures! My house too has been flooded SEVERAL times...and we have 3 bathrooms! ALL have fell victim more than once! I have found him in my shower stall sitting on top of the drain watching the water pour out the door like a mini waterfall clapping yelling YAYYYY! I too have to laugh to keep from crying! My ceilings downstairs have started to peel! My stair spindles are all loose and turned in an asymetrical pattern he chose! When he learned to spell his name he wrote it all over my bedroom walls. I left it on my walls because i was so proud of him....no one who see it understand, they all ask why wouldnt i clean it up! They dont get it, i never thought i would see the day he would even hold a pencil! I have learned to fight my battles. None of my pots have tops because he has taken them all and removed the handles so he could spend them, and yes i watched some of this and let him, its the lesser of many evils! I participate in April for awareness because i feel the more people know maybe the more help we will get. It amazes me how many people have no clue! I have had dirty looks and rude comments in stores because at first glance my son 'looks normal' He is 8 and almost as tall as i am but still want to sit in the cart. I get so upset when someone take it upon themselves to tell me he is too big to be in there!!! well enough of my ranting I can only pray that one day society will take an interest in our children and offer help instead of good gesture and critisism on how we deal with/raise our Autistic children!
Michelle -
I think I love you and I love your honesty! My family has been through many of the same experiences as yours, I thank God every day for my wonderful husband who is my rock when I think I can't do it any more. Thank you for a wonderful post.
Sue
I could not said it any better the pain I feel everyday is so hard we have lost are friends and some family they juts dont under stand the way our child acts. some days i think i could juts be done with this you see we adopted our child when she was juts a baby. We already had growen childern, and we started all over with her . I love her very much and cant see my life with out her. Life is hard most days with her .It is good to be true with the way we feel, its is hard and each child is different .
Amen to all comments posted! I do feel your pain and sorrow. Our son is 37 and I am really tired! I've not been one to complain to others until recently. I guess it's finally dawning on me that we are running out of time to get him to be able to communicate more than what he wants to eat or buy next. I have a wonderful husband who parents almost as much as I do :). And a supportive family, who do help, so I am truly blessed. But most of those without severe autism in their daily lives DON'T HAVE A CLUE. The incidence rate quoted when my Dan was diagnosed was 1/8,000. Something is creating this epidemic, and it not just over-diagnosis (although there is clearly some of that too). Research and services must be funded. Even if it means higher taxes. Oh, can't believe I said that! I work with adults with MR and other developmental disabilities. Adulthood is worse. Day Programs are so poorly funded that they can't be more than (hopefully) safe "day care". Start fighting for funding to support adults in the community now! And those of you with small children who have provide physical "assistance" to get them to do or not do something, be ready for when they are bigger than you. I can't"make" him get off the toilet or out of the tub or out of bed or out of the car and he knows it. I was reminded this weekend that sometimes God does give us more than we can handle, so that we'll recognize that we need to stop trying to handle it without Him, and let Him be our help. Often that's a mental/spiritual help, but sometimes He sends a real live body to take on some of the work! Hang in there Michelle and all of you.
My God, Michelle, your writing just blows me away. I'm living your life here, in a parallel universe, complete with the non-cute brand of autism, the post-drowning resuscitation efforts, the 'other' child neglected and ready to graduate...
You've left me speechless.
(in other words, this is one incredible piece of writing!)
Excellent article. Reading this blog reminds me, as if I could ever forget, how fortunate we are that our Tyler got better, still has autism, but better. Why him? I still don't even know. Sure, we did tons of biomed and ABA but some kids just don't get better. I remember when my son was barely speaking, threw himself on the floor all the time, would elope, couldn't even ask for more juice...so we taught him signing. This article well describes the stressful, life threatening situation that exists for many parents and families dealing w/autism. I also agree that NAA is a great organization!
I agree, life is so different then what is potrayed in these ads. Simple daily things are just harder when you have a child autism especialy when he's non verbal and not high functioning like most children are potrayed! Indeed i love my son, but sometimes theres a craving for just a normal day!
I am the aunt of a nephew and niece with Autism. While I support your views, I still feel that any recognition, help and support they receive is positive. I do support your views on giving to those in your community and so does my sister the wonderful often unappreciated mother of these beautiful kids. She is currently sponsoring a fundraiser for their schools special needs room, to obtain supplies needed for Autistic children - which the school has no clue how to handle the enormous rise in attendance. Thank you & keep on telling your story!
This is one of the most moving things I have ever read! I will be forever changed by your story! I really appreciate who you are and what you wrote about. It really has touched me. I will think twice and maybe even three times before I complain about my two kids on the spectrum disorder - "high" functioning range! I often fill very overwhelmed and wish I could have a more "normal" motherhood, but now I will have a better attitude and a thankful one! Other than donating to a local Autism chapter, which is a great suggestion and I will do that, I hope that hearing that you changed just one person makes you smile a bit today! What an important message you have to give, and I know that you are changing many more people's lives with your words and your story, than just my own!!! May God Bless you and your important family!
Don't know if you have thought about doing this or would even consider it, but perhaps submitting your story to a nationial news program or tv program like GMA or 20/20 would reach an even greater audience with your important message!
Wow, I work in the field as well as having an adopted grandson who has autism who lived with us until 6 months ago. (just getting used to nothaving to lock the house up) Speak out let the politianns and those working with these folks know what your needs are. Don't stand for bumper sticker answer.
Jessie in California
I love you..... Its like you went In my head and wrote what you saw. My stepson is 16 and severly autistic and I get so annoyed at how autism awarness adds or news broadcast show someone with "autism" playing the piano or painting when in fact most kids with severe autism will never do any of those things. I love when I tell someone that my stepson is autistic and they say to me with a smile "o what is his special talent?" I feel like saying well he can pee his pants 10 times a day and stay up for 48 hours in a row all while yelling in a high pitched tone that dogs can hear for miles :) I love my stepson don't get me wrong but I have never once thought of his autism as a blessing, what his autism has done to make us better people is but not the fact that he is autistic. His mom is one of those crazy "light it up blue" people her facebook page is full of autism awarness things and youtube video's of autistic kids dancing or palying the violin, she spends a lot of time buying blue light bulbs for the month of april but can never seem to get to the bank to open up a savings account for kyles future, or go see the specialist to help with some behavioral issues.
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