Oh, The Places You'll Go!

By Crystal Engler

When I graduated from college in 1999, a good friend of mine gave me Dr. Seuss's book, "Oh, The Places You'll Go."  I flipped through the pages, imagining my future life:  a successful teaching career, marrying the man of my dreams, adopting a few pets, having a yard full of kids.  Never once did I predict that my life would have turned out the way it has. 

Years passed.  I had that teaching job I was dreaming of.  I fell in love, got married, and I did, in fact, adopt two mutts.  Shortly thereafter, my son Hayden came into the picture.  I was living the life I had dreamed of as a girl. 

But something happened.  It was a gradual progression; akin to watching a train wreck in slow motion.  Looking back, my son had all of the signs of autism.  We just didn't know what the heck was going on.  I stopped breastfeeding him at six months.  The ear infections began.  We put him on antibiotics...many, many times.  When nothing seemed to help, we gave in to the doctors and put tubes in his ears.  When his system was still so weak--too weak to handle the trauma that was about to be unleashed upon him--he got his one year shots.  These included the MMR, varicella, hib, and pneumococcal conjugate vaccines.  He was never the same.

It all started.  The extreme fussiness, unusual eating habits, regression of language, lining up of toys, and social anxiety.  It took us eight months to figure out what was wrong.  There have been few times in my life that I've thanked God for my pessimistic attitude.  Identifying my son's autism early on was one of them.  After all, everybody told me he was fine.  It was typical stuff, nothing to worry about.  But I knew better.  Thus began my quest to heal my child.

So, here I am.  Autism Warrior by definition.  I fight, I argue, I cry, I scream.  If you think about it, we lead extremely violent lives.  Many autism parents have to fight the world.  They are backed into a corner, often times, in every area of their lives. 

The other day, I rushed to the door to let Hayden's speech therapist in.  I glanced at a picture of my husband and me that hangs on our wall.  It was displayed at our wedding so everyone could sign their well-wishes for our beautiful life together.  I looked into the eyes of my former self.  Such ignorance and self-assurance I possessed.  Completely oblivious to what the world holds.  I had hope.  Hope and youth were on my side.  I was ready to conquer the world.

I started thinking about all of the sacrifices we make for our children.  Who knew?  Who could have imagined the places we'd go?  I've talked to hundreds of autism warriors throughout my battle.  Some of the stories of sacrifice are endearing.  Many are tragic.  Some make you want to curl up in the fetal position and stay.  Others evoke rage and one even made my drink come out my nose.  Some sacrifices are big.  Others are small, yet still important.  Here are some autism warrior sacrifices that have brought out myriad emotions in me:

Ann has sacrificed pride.  Kasey missed her daughter's first steps because she was away with her autistic child.  Julie had the cops called on her for "kidnapping" her own inconsolable son in a Barnes and Noble parking lot.  Danielle's 30's were a blur.  Barbara has sacrificed a six-figure career.  Heather has dissected poop samples.  Lisa has sacrificed herself.  Karyn has lost relationships.  Benedicte has sacrificed her autistic child to a residential school.  Anne has lost sleep.  Brad has sacrificed his golf game and double cheeseburgers for SCD's legal foods (just the cheeseburgers, not the golf game).  Kelly and Delmma know the financial struggle that so many deal with.  Natalie added to her plate by babysitting other people's children for her son's socialization.  Jane has made financial sacrifices.  Cindy put her own health on the back burner.  Wendy has lost contentment.  Julia and Jessie sacrificed their marriages.  Tre has lost good music to The Wonder Pets and Thomas the Train's theme songs.  Joy has lost the dream of having a second child and the ability to buy good work pants.

I can relate to most of these sacrifices.  I think many autism warriors can.  My latest sacrifice was my dignity.  A few days ago, I actually had to catch my son's poop in my bare hands.  His comprehensive stool analysis test was almost over.  He couldn't hold it long enough for me to get the collection container out of the bag.  I did what any good autism warrior would do.  After all, poop happens.

So, where do we go from here?  I suppose we continue the battle.  After all, I believe God gave us these special jobs for a reason.  We may never know why, but I believe that with faith, hope, and love, one day we'll look back and say, "Oh, the places we went."

Crystal Engler is the mother of a five year old with autism. She is a freelance author and can be found at http://crystaldavidsonengler.blogspot.com.

Comments

[Cathy Jameson]

This is a beautiful piece. I would have to say 'ditto' to every sentence you have written.

For the longest time, my problem was that I was not ready to accept the changes and believe that this was part of the new me. Oh how this new path in life destroyed my hopes while my family's sacrifices increased. I hid behind my son's symptoms rather than his diagnosis. Thankfully I have been surrounded by people such as you who held me up, took my hand and got me to move past the sacrifices and awful-never-expected changes so that I could hold onto hope.

Cheers to you and who you have become. Here's to the new places you will go with the light of your child's eyes leading the way.

[Lin]

Absolutely love this Crystal!! You have such a beautiful talent and wonderful gift in your writing. I appreciate you putting down in words what so many of us feel and endure. Thank you.

Ironically, I just bought this book for my son, Sam. You may already know him through our fb friendship. He is seven, soon to be eight, and has autism. Actually, he was given autism. It didn't just happen. While we may not have all of the pieces to his autism, of that we can be certain.

At any rate, I want him to realize that we have every hope that he too, one day can go anywhere and do anything. I'd sacrifice most anything, even my life, to make that happen. I think we all would.

Have a blessed holiday season, Crystal.

Merry Christmas and a hope filled New Year from our family to yours, The Wessels

[Kim Spencer]

Crystal, I remember when my son was 5, catching poop, using the gloves to smear and stir it into the container I'd only previously known as a french fry tray...sitting down to cry at the turn of events in my life. As I was stirring poop, my friends were off to Vegas or at a party or just having their first children and not listening to me scream about precaution about vaccines. Now my son is 9 and all the hard work at that age has just about paid off. I spend very little time now opening capsules, ordering supplements, finding money and sitters so I could travel to Florida for help, or catching poop. Now I send him off to his typical 3rd grade class and I spend my extra time helping other mothers enter our world. It will pay off for you too. Mothers like us leave no stone unturned until we have no more stones in this wide world. Since we had to be here, I'm glad to be on your team.

[Stagmom's Terrible High School French]

Bon matin, Beatrice et bienvenue a L'Age of Autism. C'est dommage ca que vous dites. Et votre Anglais est plus mieux que mon Francais! (Defense de rire!) :)

(Where is Chantal Sicile Kira when you need French?)

[Beatrice]

Excuse my poor English, I am a French mother of a 3 years old high functionning autist , Stanislas , and a 9 years old NT guy called Adrien.
All around the world Autists parents struggle for their children, and in some countries more than in some others...Just imagine that ABA , PECS or TEACHH are almost not recognized here in France where psychiatrists still think Autism is linked with a poor relationship between the mothers and their children...

Nothing here or almost is done to help us and our families. No special school with relevant educative programmes aimed at our children specificities, no place to have some relief sometimes when it's just enough, nobody to talk with outside the autism community because for French people it sounds like autism is maybe contagious :-))
We have to fight to find aba psychologists, to get our children diagnosed , to keep them at school, for every single thing .
This said some parents years ago have certainly had to face the same situation as ours , parenting autistic children against the society.France is just 30 years late on you Aùerican people and among my friends, a lot of us just dream to rush to US where at least some professionnals can take care with us of our children and where autism has simply the right to exist and live.

[Twyla]

Chris, I have two daughters, and an autistic son in the middle. In some ways it has been hard, but my daughters are generally quite happy, and quite wonderful. Our younger daughter came as a surprise, but she is a great joy, and I am glad that our son has two siblings. Our situation may not be as hard as yours, because our son is generally quite happy and healthy (knock-on-wood), although very handicapped in life skills and academics. But I would not want to paint a terribly grim picture for everyone. Life is always tough in one way or another. I think in some ways we have very high standards for parenting. In the old days, before birth control, I don't know how parents had time to raise such large families and I imagine the kids took care of each other quite a bit. Life has always demanded a lot of hard work. I'm not minimizing the difficulties of autism, yet our son has enriched our lives.

[Meredith]

"person-first" language. Any child is so much more than their diagnisis, as I know you know. A I know you live. If individuals can commit to this, the automaticity may stick. I have gotten to the point that when I read or hear something that puts an ability or disability before the person, it seems unnatural. I am the very proud teacher of CHILDREN with AUTISM. They are children first...and they are very good at it. They have likes, dislikes, families, and pets. They have sisters and brothers, toys and books. They are loved, and they learn. None of these things are out-weighed by a disability.

[4Bobby]

Chris- I understand your point, but my first child is autistic. I love him dearly, but if not for my typical younger daughter, I might very well go crazy. I often hear from parents of an only child who is special needs that they wish they had the connection to "normalcy"

[Crystal]

Thank you all very much for the comments. Bensmyson, you have literally made my day. I really appreciate your kind words. Chris and Alison, it does frighten me about the "self-raising" children. I'm pregnant again. I hope for the best. The good news is that Hayden is getting better every day, but the bad news is that he has a LONG way to go. Thanks again, guys. :)

Crystal

[Chris]

I hear you Alison. My poor typical daughter has had to watch this horrible disorder unfold and watch it affect her own life. She pretty much has had to "raise herself" in a way too. My advice to all parents is not to have any more kids after having one with autism. It's not the fact that the next one may be affected (many times they are not) but it is a sheer life of hell for the siblings. It truly is. No matter how well you plan, the typical kid always sacrifices and life turns into a bigger nightmare.

[Alison MacNeil]

Thank you Crystal. My experience with autism has been a bit of a 'lost and found'. The 'lost' list is definitely much longer. Some of my sacrifices make me sad- we miscarried our third child and don't dare have another one. Or the fact I call my 9 yr old nt daughter 'self raising' like self rising bread dough, because that's about how much attention she's getting these days. Some sacrifices frighten me. I have absolutely no idea what's going on with my own health, and we have no retirement savings. And some sacrifices make me really mad and jealous and bitter and petty. I'd like to go an a g-d vacation thank you very much, hell, I'd just like to go out to dinner with my husband, wearing some new clothes too. Autism ate all that. But then there is my 'found' column. The entries are short but they are powerful. My priorities are crystal clear. So many moms of nt kids I know, are buried in bullsh*t worries. I feel grounded and centered in my life and my political fire has been ignited. The 'found' column has deep resonance for me and it's where I have to live to keep plodding along.

[Andrea]

Thank you Crystal. I could have written this piece. Our journey into autism is eerily similar. But, my son is almost 14 and your little boy is only 5. Wonder how many young girls are dreaming of their futures right now? And how many will have to live this same nightmare as we did with our boys? I wish none- but I know better.

[DebinIL]

I fully agree with bensmyson: I thank the warriors before me and proudly join their fight. I laugh with Crystal, cry with so many others' milestones (someone's little girl spoke her sister's name the other day!) and feel blessed for the high functioning little one I have. We are (unfortunately) growing, and our special diets are being accepted more (well, closer - not organic or SCD, but more GFCF is). Someday, when we have an army of recovered kids, we can point to the efforts and trials and even errors and say with confidence - autism "happened" because of outside forces and not because of my genes.

[Parent]

God bless you and your family Crystal . . . great piece. Maybe Trine Tsouderos (whatever the heck her name is) from the Chicago Trib will see it. Not that she would care.

[bensmyson]

You know what's odd about all of us parents, we don't even think about the "sacrifices", we reach out and catch the poop with our bare hands, we sit on the floor with our child instead of in an office, we sell last year's unworn or slightly used Christmas presents on ebay for the extra $30. We dye our hair in a shower rather than a salon. We sit in doctors offices expecting a miracle, we turn down offers to parties and sit at home on Sundays watching Wonder Pets rather than a Patriot's game.

And of course, as we struggle to breathe after reading the above Sky Walker story, we literally are willing to risk our own lives in hope of bringing peace to our injured and diseased children.

Crystal I believe you have put more smiles on my face than any one blogger I've found to date. I know you are here for me, you might not know it but I do and I suspect many others do too, including those in your immediate surroundings. You are a healer. I suspect that we all will one day be considered the original pioneers hacking our way through autism's wilderness, leading the way for others to follow, many others. Some of you raising 3 on the spectrum, been at it for 10, 15, 22 years are our elders, the wise sages offering years of experiences and testimony, sharing your fruit selflessly. God did give us these jobs for a reason, to give hope to all that follow that there is a place out there where they can rest and build a house, a home, raise a family and not be alone. A promised land with opportunity and trees that are filled with fruit. But we have to find that place first, that's our job.