Hi again, autism.

Bet you never thought someone would start a letter to you with something that sounds like a greeting to an old friend. But I guess that’s kind of what you are to me by now. You’re like that friend who drives you crazy, and you try to get to rid of, but in the end you always reconcile and move on together. Now, I don’t ever plan on “reconciling,” per say, but I do plan on finding a way to live with you.

However, autism, don’t think this means I like you. If I could get you to go and stay away, I would. Not because I don’t like my life with you but because of the way people see my life with you. If I could, I would get you to leave, even just for a day, so I can experience being a normal kid. But I get it. I get there is no way that’s going to happen, and I finally understand why it’s not always a bad thing that it won’t.

I guess I do owe you some thanks, autism.  So this is it:

unnamed-1 1. Thank you for letting me see the world in a way a lot of 14-year-olds can’t.

2.Thank you for letting me realize how grateful I should be to my friends.

3. Thank you for showing me how much people will give up for those they care about.

4. Thank you for showing me some of the purest kindness in the world.

5. Thank you for showing me I am strong.

6. And finally, thank you for letting me see how hard my brother’s world is so I can finally learn to understand him a little more.

But don’t forget this, autism — If I ever were to find a way to make his life and mine even just a little more free from your grasp, I would. But maybe, if you’re around to stay, I can use the way I see things now to teach other people how to do the same.

And just so you know, autism, I won’t let you take my brother either. John will in the end be able to have control over you. Maybe he has a hard time right now, but in the end he will always be better then you.

So for now, autism, I will greet you as an old, wise friend with an important lesson to teach. And  I will listen, autism, till a time you have nothing more to say. So thank you, autism, but if you really cared you would give my brother something. Even just a little something.

Sincerely,

Your old friend

A version of this post originally appeared on Life As An Autistic Teenager.

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There are things in a parent’s life that gets taken for granted, including the fact that their children will grow up, get educated, get jobs and move out.

But I’ve come to terms with the fact my son will probably never leave home.

At the moment, he’s 5 years old, on the autism spectrum, nonverbal and behind in most of his developments. He needs 24/7 support and care. He’s hyposensitive and demands large amounts of physical stimulation to get any form of satisfaction.

Spinning.

Jumping — on beds, on trampolines, on me.

Dancing (mostly by being held and bounced).

Tickling (hard enough to bruise any other child).

Eating (everything from ice cream to mud).

Making loud noises.

He has no concept of personal safety, and this makes the outside world (also the safety of home) a dangerous place. He will try to touch flames, swallow what looks interesting, climb up anything, run and chase something that catches his eye (cats, sweet wrappers, people, etc.). When upset, he will fall to the floor and roll screaming. This has happened on a main road before.

He’s loving to me and his immediate family. He will hold our hands when out and be led safely. He feels comfortable with people he trusts and knows, but he can also take a shine to strangers (this is a bit worrying).

aiden on log

He thrives on routine, and if that routine is broken, chaos will ensue. If his school bus is two minutes late, he will scream and shout and run up and down the lounge, banging himself into walls and windows to show he’s distressed.

All of this and many more incidents have made me and my wife have the discussion: “What will we do if he never improves?”

This was a short and easy question to answer.

We both agree he’s our son, we love him and we will always be there and do what’s needed for him. The thought of putting him into care is something we both are against (even as he grows older and gets stronger). We will just adapt to his needs as they come. We’ve looked and researched as much about autism as we can, but living through it has been more educational than any book can be. And from what we’ve researched, for us, the only conclusion is that he will be better off living with us.

I’ve long since thrown away the ideas of a relaxed retirement and am now planning for how best to serve my son’s needs. I see articles from parents saying how hard it is to let their child go, but I could not see myself doing this. Yes, I know things will get harder, but my stubborn mindset is fixed. I may be overprotective, naive and scared. But that’s how I feel.

I will do anything to keep my family happy. My son’s future is not yet written, and he could take massive leaps forward, but if he doesn’t then I’m ready. I will always be ready. That’s my mantra.

family photo

This post originally appeared on Autism From a Dad’s Eye View.


Dear Justin,

I trust this letter finds you happy and healthy. I hope by the time you receive this I will have been gone for many decades, and that this last missive in your mother’s attempts to parent you from beyond the grave will be delivered to you when you are old, but still well. Forgive me, but really, why should death preclude me from continuing to control everything?

You may have been wondering all of these years why your brother periodically reads passages to you from me. I wrote all of these letters instead of videotaping myself because I feared seeing me would confuse you, perhaps incite you to ask for me post-mortem, the thought of which I emotionally cannot bear.

I wrote the lion’s share of them before I grew truly ancient, because although most of your great-grandparents lived to be almost obscene ages, you never know when it will be your time. I didn’t want to be caught unprepared.

Planning was your mother’s forte.

It was my fondest desire prior to relinquishing my physical self to the mortal world that your last decades on this earth would be productive, safe and engaged. I am certain your little brother, whom I have pestered innumerable times over the last 20 years to watch over you, will be your stalwart companion, your protector, your friend. You two have always been close in your own unique fashion, a fact I attribute far more to your inherent interest in one another’s well-being rather than any scenario your father and I were able to construct over your collective childhood.

For over 40 years I have watched him teach you, defend you when necessary, and stand up to you when the situation called for it as well. We tried to promote a bond between you, to make Zachary see the gifts that came into his life as a result of your autism and his own far outweighed the burdens inevitably resulting from it. He has assured me many times that in its own way autism enriched his experiences, imbued him with patience and a facility for compassion he would not have possessed otherwise.

It is my most profound hope that my love for you, which began long before your cells divided and multiplied in the floating sanctuary of your personal test tube, was passed down to you as well. I hope the strength of my commitment to you became mired in your DNA, a permanent fixture in your cells, a cocoon within which to wrap yourself since I’ve been gone.

I hope you have only remembered the love we had for one another, the unbreakable connection that with luck has sustained you and enveloped you when you were sad, these decades past. I choose to believe in some fashion I have remained with you, that our bond to each other has transcended death.

So, as I’m writing this last love letter to you I will have to summon some modicum of faith, permit myself to trust that your middle-aged years, your descent into the realm of the elderly, and your arrival there have been for the most part a journey encompassed by hard work, various social opportunities, and frequent visits from those who love you still.

I have requested your brother leave these letters bound in a book for your caretakers to peruse, with each entry marking a new passage in your life, an acknowledgement you yourself are moving closer to your own final moments. I hope the people who have cared for you, fed you, clothed and housed you, and enjoyed you to some degree, have read these on occasion. Photos tell a story, but nothing paints a picture more illuminating than words.

If my wish came true, and in their few idle moments they were able to reflect upon these letters I have left for you as solace and succor in your remaining years, I hope those who live with you will understand this. That before them is an old man yes, one who can intimate an entire conversation with his eyes, but cannot emit one from his mouth. That this elderly gentleman is quite contrary at times, but can be reasoned with, does comprehend the subtleties of demand and request, and will comply in his own time.

I hope they fathom your innate intelligence, push you always to accomplish more, solicit from you your best self in all domains. You are capable of so much. I hope that fact has been recognized, and honored.

unnamed

Finally, my deepest desire in creating this legacy of your life is that your caregivers will be cognizant of how loving you are and were, how affection was always a staple of your personality. I hope my words will convey to them how demonstrating your love for those in your inner circle dominated your days. I wish them to see once you were an adorable child who always eventually conquered his anger and his incompatibility with the typical world with a mighty hug.

I hope my anecdotes of your childhood, the extra time I had to build into our morning routine for your embraces, the way your arms would encircle me at night as I sang your baby song to you and you patted my shoulder in appreciation, will stay forefront in their minds even when you are difficult. I pray they will see you as a whole being, an entity capable of the full range of human emotion.

I hope they will have loved you, even a little.

I have long ago gone into my “good night,” and I wish you safe passage into yours. I will say to you what I whispered in your ear every evening I cared for you, whether you were infant, teen, or grown man. I leave you with this, my forever-sweet son.

Sleep well, Justin. I love you with all of my heart and all of my soul. As always, you are my good boy.

Rest.


It’s a gorgeous spring day here in Northeastern Pennsylvania. I stand in my kitchen in front of the window, preparing baked potatoes for dinner. I gaze out the window in a bit of a daze. The time change is still wreaking havoc on mine and Liam’s sleep schedule.

I see all the neighborhood kids outside playing. Smiling. Yelling. Laughing. Playing together and having a blast. My heart sinks. My son isn’t outside having fun. He hasn’t been asked to take part in the games being played. He sits in the other room on his computer. Googling and reading about edible and non-edible plants.

I feel my eyes begin to swell with tears, and I move my work further down the counter. This way, I can’t stare out the window. In that moment, rational thought takes hold. Liam is happy. He’s doing something he likes, and he’s having fun. He’s also learning, and it’s not forced learning. So why am I so sad?

I enjoy time to myself. I would much rather be alone with a good book or creating something than to be outside with a bunch of people, wondering when I should speak or fearing I may cut someone off unintentionally.

I think sometimes, as parents, we see what all the other kids are doing, and we long for our children to be taking part in that too. That doesn’t always make them happy.

Yes, there are times when Liam longs to be included, and that is truly heartbreaking. But in moments like this, when he’s perfectly happy being himself and doing his own thing, why do I long for him to be included, where he doesn’t care to be?

Sometimes I think we need to step back. We need to assess the situation, and we need to think. Is our child happy? Does he/she care that they are alone? Why do I care? If my child doesn’t care, then neither should I.

So I asked him if he wanted to go outside and play. His answer? “No, Mama! I’m learning about plants here!”

Just yesterday as we came into the neighborhood on our way home from town, there were kids playing outside. Liam commented nonchalantly, “Now that all these kids don’t like me or are mad at me, they don’t ask me to play. But that’s OK. I don’t have to worry about anybody bein’ mean to me.”

From the mouths of babes, folks. Sometimes, the best advice comes from the mouths of babes.

unnamed (3)


Hey Girl,

It’s been a while. How have you been? Tired, I bet. It’s been like 10 years. What is Bob now? 15? 16? I always lose track of time. I bet he’s grown. I’m pretty sure you’re so proud of him. I just wanted to drop you a line to remind you of a couple of things — things I hope you did on this journey. You know the one.

img_4030 The one called life.

I hope you took time outside of therapy to enjoy him. Childhood is short. I know you want the best for him. But I hope you took time to watch him grow — from kindergarten to high school seems like forever, but it’s over in the blink of an eye. Seriously, I hope you didn’t blink. Because if you did, you missed it. You missed some awesome things. I hope you didn’t.

I hope you took some time for yourself. I know his schedule is hectic, and you’re busy. Truly I get it. But I hope you did. I hope you remembered that before this little person, you were a person too — with wants and needs and hopes and dreams outside of your precious angel. You see, it was important for you to do this. Not only important for you but for him. He needed you at your best. I hope you didn’t disappoint. It was so important that you be on your A game.

With all the ups and downs, I hope you understood what this was all about. In the grand scheme of things everything is the same — we’re all on our own journey — autism or not. We’re all stumbling through life. It’s not always on your shoulders. You can’t always fix everything. And that’s OK. It’s truly OK.

Life will continue moving on, regardless of the outcome or the circumstances. It just does. Thank God it does!

Xoxo,

Your future self

This post originally appeared on I’m Bob.

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Two years ago I withdrew my child from mainstream education after a regime of bullying (from children and an adult learning assistant) shot his self confidence to pieces.

He was 5 at the time and made to feel worthless. The psychological affects of this were vast, including an inability to speak fluently anymore and other distressing physical behaviors.

Since then, he’s progressed by being home educated, having plenty of play therapy to rid his memories and in some cases, reenacting the bullying with dolls to help him process and transition.

DSC_1546 Today, after a few months of nothing unusual, he awoke and began to cry. He said he can remember how the other children would sit at the table not talking to him, that he could feel what they felt, and it was horrible. That they wanted to leave, and so did he, that it feels like there’s a traffic jam in his stomach and memories in his legs.

I got him some paper, and he drew these bad memories, putting them securely into an envelope. We then dressed warmly and took the envelope out in the rain and went for a walk. We found a quiet wooded area and I pulled out the spoon I’d brought. We dug a hole, and he buried his worries.

As we walked away, he jumped in puddles saying his memories had left his legs. I presume they’d made him feel heavy and sluggish, like when you walk and you’re feeling sadness.

My darling came home and had a warm bubble bath full of ducks and empty bottles for pouring.

If your child is having trouble processing unpleasant memories, I suggest writing or drawing them on paper, tying them to a helium balloon and letting them go in the garden or burying them (not in your garden, as they are still there). Somewhere a bit further away. Toys are brilliant for reenactment; please try not to show distress at what’s enacted but do show reaction (i.e. “That’s not nice of them. They shouldn’t do that to dolly.”).  Never break role. Over time, your child may talk about it, but if they don’t, this is an excellent way of finding out what has transpired. A mood diary is also good; they can write their feelings and recollections down.

Our children replay situations in their heads, reliving each experience and memory as vividly as when it happened; they need help to process it sometimes, or it can lead to frustration and in severe cases, like my son’s, regression.

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