The Train
By Deb Mylander
Anytime the natural order of life is altered or skewed human beings, in general, have a difficult time accepting the different reality. For instance: parent's are supposed to die before their children. My Grandma lost her son (my father) to cancer when he was 44. That was 17 years ago and her heart still feels the pain where part of it was severed and buried with her child. Another example: children grow up and move away. However, having a child with a disability means this specific “natural order” is broken.
Typical lives follow a rhythm of milestones and anniversaries. In one week my son will mark one of those milestones, his 12th birthday. The final year before he officially becomes a teenager. This birthday, more than the 11 others before it, is causing me a lot of fear and trepidation. In six short years he will technically be an adult. What will adulthood look like for him? Will he be able to drive? Hold down a job? Manage a house on his own? Will he ever have a girlfriend? At 12, on his best days, he has the mental capacity of a 6 year old. So does that mean at 18 he will act like a 12 year old? I don't know the answer to any of these questions, but they are replayed in my mind with a steady rhythm much like the sound of a train moving down the track.
I see old women in the grocery store with their adult disabled sons and I often feel like it is a window into my future. I think of these as my “crystal ball” moments. There stands a woman hunched over and frail trying to give verbal instructions to her son who has a middle-aged body and a child's mind. There is a reason that we are meant to have children when we are younger, it's because the amount of work that is involved in rearing them requires youthful energy and stamina. When a child has a disability, like my son, the child rearing gets stuck forever in first gear, yet the car (the parent) continues to age and decay.
In my best moments, I see my son living the life of Forrest Gump. Being able to travel the world and experience an alternative existence and among other people involved in extraordinary things. However, in my worst moments, I envision him living in our basement with black plastic covering the windows wasting years away in front of video games or the computer.
My son's disability has forced me out of the here and now. Right or wrong, that is what it does. Everything I do for him is in hopes that it will allow his future to be less restricted. At times people will say to me that all children have the potential to end up with a tragic story, “Johnny down the street could end up in jail,” “Becky around the corner could end up pregnant at 14.” Although I consider this well meaning advice, it doesn't lessen the fear I have for his future. The scenarios for Johnny and Becky may come true, but they don't have a diagnosis that virtually guarantees a bleak future.
In one week my son turns 12. The “crystal ball” moments are happening more frequently because he is looking more like a young man and less like a child. My anxiety about his adult life has ramped up to a steady drone. The sound of the train chugging down the tracks used to be very faint and far off. It has become much louder and more persistent, like this morning when my son uttered words that might as well have been a train whistle blowing loudly into my ears. He said to me, “Mom, if you wouldn't have given me those shots, it wouldn't be like this.” He told me this after getting in trouble for leaving his shoes outside in the rain (again); staring off into space instead of taking his vitamins and medicine like he was supposed to; fixating on his lego's instead of getting dressed; and not being able to find his homework, lunch bag and coat. His words stopped me in my tracks. Up until that point my eyes were seeing red. The red suddenly became very blurry. He was right. None of this was his fault. He can't help it that his brain is unable to process auditory commands. He can't help it that he is never invited to birthday parties or after school play dates. He can't help it that he has autism. I should have helped him and I didn't know any better. My eyes and heart filled with the same familiar tears of regret, anguish, and despair. All I could say was, “I'm sorry.”
I didn't or couldn't protect my son. But I'll be damned if I will ever allow him to be hurt again. That is why I will keep looking for ways to help him learn and methods of learning that work best for him. That is why I will continue to buy and cook meals that require the combined knowledge of my great-grandmother, a professional chef, and a naturopath in order to prepare. That is why I say “No” when all of the experts tell me that multiple vaccinations and a diet that includes sugar,gluten, and wheat are perfectly safe and only “wackos” believe the opposite.
What I see in the “crystal ball” at times scares me, at times paralyzes me, but it also makes the fire of determination strong. So, I may end up being the old woman hunched over the shopping cart. But maybe, just maybe, my son will be standing by me, giving me directions and being a much needed and loved companion in my last years on this planet.
Deb Mylander resides in Oregon with her family.
To Parent: Thinking of you again, today, with so many allergies. The same thing has been done now with eggs and milk, that was done with peanut allergies. I hate to refer people to science sites these days, since everything is so skewed, but when I see something that sounds applicable and promising, I feel it should be shared. It's oral immunotherapy (not like the shots that my sister has been getting all these years, to me, bypassing the normal immune system, just like vaccines do.) It seems to be having some success. Both articles are on Sciencedaily.com today (3/1/10)
Posted by: Jenny | March 01, 2010 at 11:55 AM
Very touching essay, Deb. I live your fears, too. My ASD sons are 18 and 19. We are doing all the after 18 services research and implementation we can, and we are lucky as we live in a state with alot of options (Delaware).
My older son is Asperger's. He actually has had more problems than my non-verbal, more profoundly affected 18yr old, as he has had to try to navigate the typical social world. It has not been kind. Luckily, parents of kids coming up now with ASD's have the advantage of more public knowledge, and increased ASD oriented social groups and services than my son had.
As for anyone who chastises an autism parent of focusing on doom and gloom: this is not fair. it is a legitimate, incredibly weighty aspect of parenting a special needs child, and one should be able to purge their fears and negative projections. It helps one feel better to get the supportive feedback, and possible info to help ease the worry. As someone once said to me as I expressed the same concerns, "Just don't THINK about it!" My response was that I HAVE to think about it, as we have to plan, plan, plan. The response was "You're right; I'm sorry".
Deb, all I can say is to plow through, and take advantage of EVERY resource out there to help you and your son. Take proactive stances regarding your local government reps. Go to support groups. I wish I'd done all those things in my sons' younger years.
Most of all, know that you are not alone, and that there are many, many others experiencing the same situation. You and all the families in our situations are in my prayers. Sending a hug your way.
Posted by: Katie | March 01, 2010 at 11:11 AM
My younger sister died at age 14; another younger sister died at age 44. I was older and suppose to go first. Both times I had and still have a broken heart. yet I know they are in a better place and don't wish them back. I have met parents who's kids have been in horrible car wrecks and they tend to them just like we tend to our children with autism. Hoping they will have a better life. I also have a "normal son" who was a super good kid until he was 17 and then totally destroyed his life with drugs. I wonder everyday what I could have done different. You can't even help them. They have to want to help themselves. I pray hard. I always remember we are not promised a tommorrow and we totally have no idea of what will happen next. I also realize that life is short and eternity is forever. Hang in there and God bless you and keep you.
Posted by: n | March 01, 2010 at 06:21 AM
Great piece of writing Deb, very insightful and substantive. I do worry about my child everyday as well. Elika is quite beautiful but I also worry about her sister as well burdened with my bad decision making and trusting these people that are not really doctors with my treasure.
I do not want any of us to do this and we simply have to keep looking harder and harder for answers because I think that there are more answers and we owe it to our children our families our country and ourselves to contiue working to find the pathway back to normalicy for our children and we will. Just pray on it, God sees and hears us and I believe that with all of my heart
Posted by: WILLIE | March 01, 2010 at 04:08 AM
Deb, your analogy of the train is quite appropriate...Family members caring for autistic children often feel like we have been run over by a train, but the saddest part is wondering how bad our children feel, when they can't even really tell us.
"He said to me, “Mom, if you wouldn't have given me those shots, it wouldn't be like this.”
Thank God your son can speak these words, and in an entire logical sentence. If he can speak he can do more than you realize. Children with autism are often so limited in their logical thinking ability that they cannot "think outside of the box", the horrible box that put them where they are. But we can think outside of the box for them and we can keep pursuing answers for them. There are so many avenues of therapy; I have a long list of therapies that we haven't been able to try yet, but this list tells me that there is a "Light at the end of the tunnel", especially based on a comparitive analysis of where my grandson was and where he is now in his recovery process which is ongoing and I fully expect this to continue for many years...I am feeling exhausted after only 2 1/2 years of this, but my grandson is giving me the will to live because he needs my help. And this entire situation has taught me that I am in dire need of Divine Guidance and Assistance; I don't have the strength to cope with this on my own and I can't figure out the answers without God's help and direction....so I just keep PRAYING.
"He was right. None of this was his fault. He can't help it that his brain is unable to process auditory commands. He can't help it that he is never invited to birthday parties or after school play dates. He can't help it that he has autism."
No your son can't help it that the vaccines damaged him, and you can't help it that the government and medical system deceived you into believing that these shots were safe for him. So it is not his fault and it is not your fault, but we all wish that we could just fix it right now and make it all better. Our children may never become totally "normal", but as long as we keep making progress with them there is hope. Your son is only 12 and his brain and body is still growing and developing.
I have been in that place of hopelessness and fear many times, but thankfully God restores me to the place of realization that it is "Progress not Perfection" and that we are all on a journey of "Progressive Revelation" and "More shall be revealed". With God's help we can only live one day at a time and "Live in the Solution instead of the Problem"....
My heart goes out to you and your son and you are both in my prayers. God bless you for everything you have done and will do for your son in the future. That train that is rolling down the tracks might just be that "Peace Train" that Cat Stevens wrote about...
Posted by: Autism Grandma | February 28, 2010 at 10:27 PM
Deb, Beautifully written. I can feel the stress in your writing. 18 will be here very soon. This really got to me. My ADHD son asked me why I got him "the shots" too. It breaks my heart. I feel so duped and stupid.
Posted by: Catherine | February 28, 2010 at 09:59 PM
What a touching piece. Thank you for sharing. I think your son's same thought every time I look at my child. Oh, to turn back the clock and do over those first 18 months. My sweet, intelligent son is locked in a body that can barely communicate at age 7. What will he be like at 14 or 21? Oh, to have a "crystal ball" to see how this is going to turn out for all of us... hopefully it will be better than what I imagine.
Posted by: MelissaD | February 28, 2010 at 07:02 PM
In 2002, My husband and I made a decision that was lonely for us both. He took a promotion to work away from home and I moved back to where I was raised. I hoped my son could help my aging father and take over the two beef farms.
My son has learned a lot, under the watchful eyes of my father and husband.
We also built a new home at this time. I found the contractor was less than honest and found with my husband away from home a great deal fell on me. I had to hang my own doors, put down my own wood floors, sand them and polyurthane the floors, and doors, paint the entire house - even had to dry wall a great deal, and do some electrical work. Even all the landscaping still had to be done especially the ditch running down the hill beside our driveway.
Through it all my son - well he hung all the doors and put on the knobs!!!!! He had the strength when it left me to drive the heavy hammer on the floor nailer, he had the strength to help me lift the drywall, to move in the furniture. He had the strength and patience to pick up the bricks around our house and lay them flat to make a pretty but very long pathway in the ditch beside our drive.
All this while he attended a new highschool and changed seizure medications many times. He did this at times when he was almost insane with depression and was convinced that there was something evil about our new home, and that we must have built our house over an old Indian burial ground.
His grandmother told him now that he was a sopomore in high school to stand when a girl entered the room and open doors for them. He did this at the same time I know he kept in his back pack figures of Dragon Ball Z toys and played with his legos in the evening before bed,or as he listened mostly (not much to talk) to a girl that called him from school.
He is 23 years old now, no girls call anymore. He acts like six sometimes, sometimes 12 and sometimes 50. He could easily live his life out in front of a video game and maybe be happy.
He has more character in his little finger than all the people on the IACC committee put together. It is not that I am unsatisfied with what he is. It is just that the whole family, town, county, state, and nation is going to really miss what he could have been at his full potential.
Posted by: Benedetta | February 28, 2010 at 04:41 PM
Oh how the pair of an aging mother and her disabled adult child never fails to bring tears to my eyes! It's usually in the grocery store ie: a public place, so by now I've learned to quickly force back the tears and muster up smiles and a kind word for one or both of them.
I so appreciated reading and reflecting on this, thanks for writing it.
Posted by: Amber | February 28, 2010 at 01:34 PM
I can only hope that my preschooler with an ASD will be able to communicate his thoughts so eloquently at age 12. You are clearly doing some great things with your son.
But I wonder if anyone can give me some insight into an aspect of what your son said that day. I think it is great that he knows that the primary source of his difficulties are the result of something outside of his control. He has a hard time remembering to bring in his shoes, and focusing on the task at hand, absolutely not because of a weakness in character, but because of a difference in the way his body works, due to an external factor. *And this is where my reference to your son ends Deb, for the rest of this post I am thinking of my own son, and our future, and my future ability to shape his point of reference in the world.*
And if my son said something like that to me, I think I would have collapsed, it's a punch in the gut. I know kids say similar things to parents all over the world. But after the initial shock, and in discussing it with others, with loved ones and other parents in similar situations, I think that the message of possible victimhood and helplessness would seem to jump out at me. At least it seems to foreshadow a possibility of future feelings of victimhood and helplessness. Is it just me? Am I reading something into this that isn't there?
It seems to me that one of the lessons that we should be teaching our children is that we are not alone in being dealt terrible hands in life, and even when we believe we know whose fault it is, and it isn't ours, we shouldn't focus on that part, we should acknowledge it and accept the consequences of actions we cannot take back, but we should focus on moving forward and learning to grow in our new reality. I am not talking about teaching our children that their bodies will never function any better than they do right now, but that we cannot snap our fingers and automatically undo what's been done. And knowing that, we all have to work our hardest and sacrifice to gain as much as we can of what's been lost. And it's not their fault, but that isn't a good reason to indulge too long in feelings of despair, victimization, and helplessness. Of course, all human beings need to indulge in these feelings at some points in our lives, but we should teach our children not to stay in these feelings too long or too often, just as we teach them not to hit when they are angry, and how to tie their shoes, shouldn't we?
Posted by: Just wondering | February 28, 2010 at 11:58 AM
Deb, You gave words to my thoughts and feelings regarding both my boys. Our oldest will also be turning 11 this year, and that thought really has me panicking at times; and it has me looking back and examining the "what ifs". Thank you for the encouragement, and keep up the good work you are doing with your son!
Posted by: Deb | February 28, 2010 at 11:55 AM
Amen and thank you so much. This must have been difficult to write but so important.
Posted by: Gatogorra | February 28, 2010 at 11:11 AM
This is the reality that is so true for all of us. God help us all. And I don't believe in anything anymore. My world was turned upside down 7 years ago and nothing has been the same since. I want my kid fixed and my life back. I don't want to have to worry about what happens to my kid when I die. I blame myself first for letting it happen and "this great country of ours" for not fixing it. Find a cure for autism damnit. Yes, a CURE.
Posted by: emilysmom | February 28, 2010 at 09:58 AM
Praying for you and your son Deb, and all of us.
Posted by: Parent | February 28, 2010 at 08:34 AM
As if our children with ASD can't wind up in jail or with an underage pregnancy? And in neurotypical situations, at least you can understand what is happening to you and you can voice your needs. If you are not able to do these things for yourself, you are pretty much already in prison.
Posted by: ginnie | February 28, 2010 at 08:21 AM
"But maybe, just maybe, my son will be standing by me, giving me directions and being a much needed and loved companion in my last years on this planet."
From the little you've told us about him, I think you have a good shot at this scenario coming true. With all you're doing for him, he will continue to progress even after he's technically an adult. Keep up the great work and the wonderful writing. And leave no stone unturned for your son.
Posted by: I know how you feel | February 28, 2010 at 07:45 AM
Well, I'll be in the grocery aisle with you. Hopefully our boys can help our arthritic bones by bending down for the epsom salts on the bottom shelf. Truly, there will be so many of us. Perhaps we will create a sort of alternative 'Golden Girls' with our ASD kids right there with us. They'll have to add gfcf to the early bird special at Denny's.
In all seriousness, this is the fear that I breathe in and out everyday. All I can do is try to remember that all of you will be doing this with me and with humor and love we will create communities for ourselves that help us make sense of the ridiculousness of our situations.
Posted by: Alison MacNeil | February 28, 2010 at 07:01 AM