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Interagency Autism Coordinating Committee Needs Your Input

Sometimes Autism Sneaks Up On You

Boy with dad By Rosemary Dubrowsky

The day started like any other weekday.  The alarm went off and I was up and getting Danny’s food ready to go to school.  He is 14 years old has pretty severe autism and goes to school for part of the summer.  He is on a diet that helps his significant digestive issues as well as his “stimming.”   Today it was gluten free pasta with tomato sauce and dehydrated vegetables and some mini chicken tacos.  Danny won’t eat something green on his plate, so when he was very young, I took to dehydrating just about every vegetable under the sun to try to get something healthy into his body.  Today, at 5’11” and 200 pounds, we still do that.  He will take the sprinkle bottles and put them on himself.  Little does he know that he is eating a significant amount of vegetables.
 
Upon waking, he swallowed the multitude of vitamins and drugs that help him get through the day.  He does this easily now, although that was not always the case.  I do not miss the days of putting the concoction of vitamins in his baby bottle, taking a syringe and squirting them into his body or the infamous shot glasses of mixture he would swallow begrudgingly.  At the age of 9 he started swallowing pills, which was a huge feat in our house.  Now he wants to take 7 or 8 at a time, and the amount of gratitude I have for that is not explainable.
 
He got on the bus happily and I took off upstairs for a shower so that I could go to work.  Working full time is not easy with a child like Danny.  Every time the phone rings, your heart skips a bit worried that there may be issue that has occurred and you may have to bolt out the door.  I am grateful that I have people I am surrounded by that understand. 
 
I took a pretty long shower, got dressed, hopped in the car and headed out to work.  As I usually do, I stopped to get a coffee before work and as I walked into the gas station to get my coffee there were two sets of Dad’s with their 13 or 14 year old sons. One of the boys was talking to his Dad about being so excited about going to work with him and helping him out.  That is when it happened.  BOOM!  Like a slap in the face.  It is a sight that was so simple, yet, so hurtful at the same time.  My husband is not able to do that.  Nor will he probably ever be able to.  I should know that by now, after all, Danny is 14 years old.  I know what he is.  I love him for who he is, but there it was; a knife in my heart and tears welling up in my eyes.


Why that instance?  It is never when you expect it.  No, you keep things all neat and work hard to make sure that things go right for your child with something people have deemed as autism.  A word that I have really grappled with for some time.  A word that is only the tip of the iceberg for someone like Danny.  His medical issues out number the “autism” issues, so why not choose another word.  Today I choose to keep on using that word, but really consider taking it out of my vocabulary many days.
 
Why today?  Could it be that I watched and listened to “The Life That Chosen Me” on Facebook while getting Danny’s food ready and the words ring in my ears?
 
Could it be that I am going to be sending my son to a sleep away camp next week and need to make sure that I can communicate all of his wants and needs to a counselor so that there is not a behavior and he does not get kicked out; or the thought of making the list of foods that I need to prepare for the whole week so that he does not get sick and have digestive and sleep issues while at camp?
 
Is it that he is now taller, heavier and MUCH stronger than me and some situations just seem like they are so much work to overcome that it seems like I would be better off just hiding in my house with him until the worst part of puberty passes (if it passes)?
 
I, like any other mother just want Danny to be happy and grow up and be a productive part of some community.  If there was some job that remotes could be tested or a way for him to show his methodology for maneuvering around YouTube to find his favorite movies without typing a thing to make it more efficient, sign him up.
 
Life moves on, and so do we, but there are those unexpected “zings” that sting so badly.


Rosemarie Dubrowsky - mother to 14 year old Daniel, serves on the Board of the National Autism Association and POAC (Parents of Autistic Children).

Comments

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michele i.

great piece~

Ma Hu

I am a special needs teacher and I have the same zings, of course not to the extent of a parent but still it hurts. I have worked with special needs children for 20 years. I remember the first time that saw a random boy on a bike that reminded me of a student...I cried in the car for 10 minutes. That was well over 15+ years ago, and I still remember how much it hurt my heart (and still does). I know that the challenges you face as parents outweigh those of the educators, but please know your children are loved, for who they are and who they could be.

That long ago student is now 27, and I have lost touch, but the caring and love is still there.

Angie

What a great post, something I know I have felt many times before myself...
Makes me wonder what our kids feel when they see the same thing? What my Alex would think seeing that Dad and son, what your Danny, or any of our super smart, loving, injured and trapped kids would feel. Breaks my heart even more...

This was especially true for my boys, Alex more than his Brother Ethan (Alex is nonverbal, both on the spectrum).because this is him to a "T"...I would just include, learning to use my Blackberry and his Itouch in one session, much faster than I did, he could teach ME, and has on many occasions...

How many other kids of ours are like this:

"If there was some job that remotes could be tested or a way for him to show his methodology for maneuvering around YouTube to find his favorite movies without typing a thing to make it more efficient, sign him up."

We just 'found' you tube about 6 months ago and I cant believe it took us that long to realize it wasnt just for fame-hungry teens/jokes/etc...but gosh, its helped SO very much for our boys who both LOVE peer modelling/watching others who are just like them!

Thanks for sharing!
Angie
Mom to Ethan, Alex,and Megan

Maranie Adams

Roe,

You know my heart breaks with you. I get those frickin 'zingers' all the time. Always when I least expect it. Sitting at a high school football game my husband is coaching, one where my older two sons were ball boys first, as junior high students, then played on the team. The zinger comes as it dawns on me that Dean is the age where he should be a ball boy. Or starting out his freshman year as a receiver or kicker..hoping to be good like his brothers. Out there with his dad. And the tears start to flow- in the middle of a stadium, watching a football game. I love you Roe... thanks for reminding me that in this crazy life we lead, I am not alone. And neither are you. (((( HUGS))))
Maranie

Amy

Rosemarie, this is so touching, and so true!

I wrote about the same thing last holiday season - I completely adore my son and am thrilled with all the progress he's made, yet I still have those moments, all the time. fyi, it's at http://www.literarymama.com/creativenonfiction/archives/2009/12/christmas-eve-at-st-clement.html

F Salim

I happened to come across this blog and I want to salute each and every one of you moms who are so busy running their lives but more importantly enriching the lives of these special kids. I have a very dear friend who has two autistic kids - and as I have gotten to know and love these children, I realize how it is the love that you are providing these kids that is bringing out so much positive in them. Keep loving them the way you do and I hope that some day soon, we see a cure for this epidemic that has gripped the hearts and lives of so many. I wish there was something I could do for all of you but till we find a cure, the best thing we as adults can do is to show all our kids how special and loved they are!

Twyla

So vivid, so true...

bensmyson

"My head is always spinning trying to anticipate the next thing that's going to be a problem - some days - like when PBS or Disney decides to re-arrange their tv schedule to show a special movie - a treat for most kiddos - sends my kiddo into a fit! "

Diane I thought it was just me. True story though, Thomas the Train is broadcast on Sunday mornings here on the local PBS. But for some reason for about 3 weeks in a row the broadcast was skipping, freezing and causing Ben to go absolutely nuts. I contacted the station and got the chief engineers contact info, explained the situation, it turned out there were some problems with "feed", the man had Thomas put on an hour earlier and for some reason it fixed the problem. I never asked but I imagined the engineer knew why I was calling and why I so desperately needed it fixed. If you live in my state and that screwed it up for you Im sorry, well no Im not really, it works for Ben :)

Mrs. Jones

Thank you for that lovely piece, Roe. And when those knives cut, it feels just as sharp the 50th time as the first.....
xoxo

Dawn Loughborough

I get these moments too; the curveballs reminding me that something is wrong instead of taking on all is well and treasuring the gift of my son. So, it happened recently when I took him to camp. I had to keep getting off it and recreating being in the present to his life, not mine or someone else's. My preconceived notions keep getting in his way because when I really look at him, he is happy, but when I get those moments when everything feels shattered I remind myself that the future I had hoped for was all made up in the first place or an inherited conversation, and the current world he lives in is pretty great. We love and support each other infinitely. Yes, I get sad, but yes I get that life is also amazingly abundant.

nhokkanen

Thanks, Rosemary, for sharing your insights. Seems to me that longing is the flip side of hope, propelling us to help our kids reach their full potential. Those twinges are sour to the sweet, yin to the yang. They remind us how firmly our spirits are engaged in this necessary work of wellness.

Diane

Rosemary,

I'm with you totally. Our normal days - which are so far abnormal from the rest of the world it seems. My head is always spinning trying to anticipate the next thing that's going to be a problem - some days - like when PBS or Disney decides to re-arrange their tv schedule to show a special movie - a treat for most kiddos - sends my kiddo into a fit!

When those moments like you detailed occur - I try to dig deep and be thankful I have a son (my kiddos were premature and given little chance to live - so for me its a flahsback to the hospital) - helps to jolt me back. I know our kiddos are sick, but it could be worse - really.

Keep strong - your a mom warrior!

BTW - can you detail how you dehydrate veggies & taught pill swallowing - your a hero in my book conquering these two!

Diane

Teresa Conrick

Roe-

This is so well put and to the heart. These responses are poignant as well. I am with you like so many others here. We sometimes just have to survive while everyone else gets to really live. We have to remind ourselves that our kids are injured, sick and vulnerable. Being sad or angry or whatever is part of this life and thank God that we have a place like AoA, or family/friends that "get it", if one is lucky enough, to be able to reach out. It is those parents who do not reach out to share the joys and sorrows about their children that worry me.

bensmyson

On the afternoon of Saturday May 13, Mother's Day, 2006, Dr. Karen McCarron killed her 3 yr old daughter, Katie, by suffocating her in a plastic bag. In the very early hours of Sunday morning. Katie used to attend a private, very well respected and expensive school specializing in autism. The school is right down the road from me, Ben was born a month earlier, I knew nothing of autism then but I remember thinking at the time how this mother had everything going for her, the child had the best support money could buy and love would provide. I remember thinking this woman was a coward, narcissist, an all too familiar piece of crap we read about in People or see on some tabloid show, or God, on CNN or Oprah weeping about how hard it was to fail, overcoming the poor pitiful me mengitis... The Biggest Loser!

Rich people, poor people, white people, people of color, educated, uneducated all kill, all are capable of evil. This woman, Saiqa Akhter and those before her and after her killed their children because they are killers. Why they did it is for defense attorneys to figure out. The long and short of it is that they killed because they were killers and only another killer knows why.

We have all fantasized or have had wicked thoughts, you find a bank bag full of money.... she asked for it..... Id love to tell him what I really thought.... my wife will never find out.... its only money.... if I leave my husband for him I can start over... no one will miss it. And we all drew the line when it came to reality. Id never spend the last $500 I have in the bank to travel up to Philly just to hit Offit in the face with a pie but I might have thought about it. If you find yourself consumed with thoughts of wicked fantasies or worse, dark luring thoughts steering you off of a bridge....

Im sorry Allison Singer said what?

Kathy

Its nice to know we are not alone. Somedays it hits so hard emotionally - the rest of the days we just keep swimming, no time for tears. Hugs to all the parents out there that know this feeling ... we all love our kids and know them as they are. It is hard for me to see what comes so easy and naturally to my other son ... my heart breaks sometimes for his struggles. It's a hard juggling act with two completely opposite children. I feel crazy at times and like I'm no good for either of them when I know I am trying my best.

Randy

I watch my son walk away from me and down the empty hallway (we're late again) towards his classroom at school - slowly, alone, hands flapping a bit. He's still so lost and I still can't find him.

Leaving, heading back to the car, out on the sidewalk, I see another dad, with his little boy, walking hand in hand a few feet ahead of me. His little guy looks up at him and questions him about maybe 10 different things all in the short span of 20 seconds or so that it takes me to get to the car.

I sit behind the wheel paralyzed for about 20 minutes. Wonder when they're going to fire me (they don't - I'm lucky to work with / for people who know our lives are a logistical mess). Guess I need to start breathing before I can drive.

Reading this post, then going back over Stagmom's description of her lowest moments, recalling how incredibly close to oblivion so many families are, how many go over the cliff. My son is an angel. We are so "lucky". At the same time we're not - every autism mom (and dad) feels this same pain in their heart. I kinda agree with Mary - autism is always in your face - and maybe to differing degrees around different circumstances - but for everyone with an affected child I believe it sometimes knocks you down and suffocates you for a while even in the quietest moments.

bensmyson

The other day at therapy I was peeking in through the two way mirror at Ben as he worked with the therapists. It was a surreal moment in time where things go into a sort of out of body experience, as if I wasn't me for a second, I was someone else, a stranger looking at my son, working, smiling, making his therapists smile and I thought, what a cute little autistic kid..... "autistic kid"

I have thought many things when seeing Ben, cute, not so cute, sweet, gentle, not so gentle, angry, mean, loving, uncontrollable, smart, eager, perfect son but never "autistic" and it broke my heart for a minute or two because it just changed my life, instantly. Of course I know Ben has autism, Ive been told that 5 times now, each diagnosis is harder to take than the one prior. What I didnt know was how others saw him.

Sure on playgrounds and around others his age I can see a difference, others may as well I assume. But Ive never known exactly what they see or think until the other day. They see autism if they are educated, they see something else if they are ignorant.

I have seen children in public at times lift food up to their lips, kiss it before eating it, knowing this is part of the food sensory therapy techniques, touch it with your lips, touch it to your teeth, cut it with your teeth....etc. And when I see those children do this I am tempted to reach out to the mom and just whisper hi, as if this is all some sort of secret. I wonder if the mom is like me, was like me, didnt think people notice these things, things that make up autism.

I really do have the most perfect son when we are at home, in a controlled environment, with nothing to draw reference or compare. It's like being in the middle of the ocean, everything is great until you want to know where you are. Im in the ocean, I got autism with me and we will get to shore when we get to shore.

emily's mom

Do we keep them home with us until puberty passes? My daughter will be 12 next week and has echolalia. At the neighborhood pool she kind of blends in because of all the splashing, swimming and jumping around that she and all the other nt kids love. You can't tell that she's by herself and no one will play with her in the water but I can. I can. I see the 5 yr old turn to her and say "shut up" because she is saying things that don't make any sense because of the echolalia. And then there's the neighbor from 5 doors down who approaches me to tell me to keep her away from his 3 yr old because she doesn't understand what she is saying and that she is scaring her and that he doesn't care about the autism just keep her away. What should be a carefree summer day at the pool turns ugly and the knife turns in my heart over and over. I don't care what I look like or if my dyed blonde hair turns green or I'm too old (55) to be doing it but I go in the water to play with her and to teach her to point her toes when she does a handstand. And I do the handstands with her.

mary

Autism never sneaks up on me, it's always right in my face.

MT

Oh Roe

I've typed out, erased and re-typed out what I want to say here. And you know. I just can't put in words other than to say Thank You.. for everything you do and have done - for "autism" and also for me personally. I've learned so much from you and somewhere along the line I elevated you up to a superwoman status. So, for me to read this and see just how human you are. Well, it is humbling. Because I see the tireless efforts you put forth. And well, I feel like I should do something, anything, to give back to you. But, maybe its just that - extending my hand or a hug and letting you know. I'm right there with you!!! And thank you, for sharing that you have moments like these. Because every now and again when I have these moments I feel so alone.

Hugs,
MT

PS. With regard to youtube and remote testing - Amen.

PPS. When Big Danny goes away to camp please RELAX and enjoy it - if even for a bit to try not to worry. But, if you really miss him... I have a littler version that I could send your way. He is really good at using Scan-It at Stop N Shop and also at taking out the trash. He also could use help with learning to eat green things :) However, he does have the capability to reprogram all the computer laptops passwords and the DVR so considering yourself warned :)

~MT

Autism Comic

Who lives these crazy lives? We do. We all underestimate how hard these lives with autism are but perfect title, sometimes it just sneaks in and hits us in the head with a large mallet. Thanks for sharing your angst, we all feel your pain and hope that it gets better for all of us. xoxo

Benedetta

My son is 24, and I still am wondering what the future will bring. I still am wondering if he will be a productive member of the community. I am still wondering if he will be able to complete his 2 year electronics program (now going into his fifth year). I am still wondering if he will find a job. I am still wondering if he can drive the interstate for this will help him be more employable. I am still wondering when is the next time his stomach will ache, or there will be that fever and a sinus infection of some kind. (just finished one of his episodes a couple of days ago). I am still wondering if he will ever come out of his room and become a man. I am still wondering if this is the land of Peter Pan and my son is one of the lost boys.

htbenz

So true, Roe ...so true...

MelissaD

Oh Rosemary, "I love him for who he is, but there it was; a knife in my heart and tears welling up in my eyes" - you hit it right on. It is the most mundane aspects of life that set me off into great sadness...like seeing a mom and her about 7 year old typical son at the department store picking out clothes for school the other day. The things that so many people take for granted that my child and I can't do are the ones I miss. And yes, if you find a place where those skills of Danny's are needed, please let us know. My son is also expert at remotes and the internet. Thanks for sharing.

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