“He Has Aspergers” and Everything Else I Never Wanted To Hear About My Son

November 5, 2014 — 537 Comments

-broken-broken-heart-26794018-299-300

 

 

Do you hear that?

Come closer.

That’s the sound of my heart breaking.

 

My son has always loved the ocean. His eyes match the sea, changing from blue to green with the swell of the tide. My love for him is an ocean, an overwhelming force which is sometimes calm and steady, and other times full of conflict.

A mother’s love is like the continuous miracle of the sea. It begins in the ocean of your womb – but there is something unsettling about the way your baby kicks. So fiercely you feel bruised on the inside. There is something willful and stubborn about his refusal to come out. He arrives weeks late, and even then – after almost 40 hours of labor.

Your baby is overwhelming and mysterious and brutal, like the ocean. He screams uncontrollably for hours a day, every day. And you bring him to one specialist after another, to be told it’s “colic.” You are advised that only a “tincture of time” will help.

 

Your toddler doesn’t hit milestones, and the pediatrician advises you to seek help. And they unravel the mystery of why your little one tantrums constantly, tears at his clothes, screams at the sound of the blender.

He has “Sensory Processing Disorder” – and you begin your quest to understand the crossed wires of his central nervous system.

You spend your days helping him to make sense of, and feel safer in, his world.

Brushing his body every 2 hours, doing joint compression exercises, assuaging his need to sink his teeth into everything by giving him chewy tubes, letting him roll on a huge ball, and crash into a mountain of supersized pillows, and jump endlessly on a small trampoline.

 

And at 3, he is now diagnosed with ADHD. And the doctors offer you their prescription pads. And you refuse. How could a 3 year-old articulate to you if medicine was making him uncomfortable?

 

And so consumed are you with his needs, so absolutely drained, that he is 4 years old by the time you even think about having another child. And your body betrays you, and says, “No.”

You live with that guilt forever.

 

 

A few years go by, and the ocean of his psyche ebbs and flows, in ways you can’t predict or explain; sometimes smooth and peaceful, but often tumultuous, and uncontrollable.

Your child fidgets incessantly. Talks constantly. Makes loud, disturbing noises. Climbs, jumps and crashes constantly. Sucks on clothing, fingers, crayons, anything.

The sun “hurts his head.” If he gets any part of his clothing wet, even slightly, he cries.

He seems to have no body awareness, no sense of spatial relations to other kids. Crashes into other children constantly.

And when playing, gets excited to the point of biting. Never out of aggression, but biting makes him the pariah of playground. You mourn that this gorgeous human being is being sabotaged by some internal trigger switch.

 

You research and find the best pediatric neurological clinic on the East coast, and get on a year-long waiting list.

 

And at 5, after a week of evaluations, it is confirmed. ADHD, Hyperactivity-Impulsive type. In addition to Sensory Processing Disorder. And they offer up their prescription pads, and once again – you say, “No.” So fearful are you of altering his brain chemistry.

Because he is, undeniably BRILLIANT. Creative. Funny. And you are afraid that medication will dull that brilliance. He is the ocean, untamed and magnificent, sometimes raging and destructive.

He is your fierce little warrior. And you are determined to help him flourish, despite his lettered labels.

Another quest begins.

 

Martial arts. Supplements. Structure. Lots of sleep. Cognitive behavioral therapy. Classification. Hellishly difficult diets.

You buy $10 socks for your child. Because he needs “sensitivity socks,” entirely seamless – and even then, an invisible piece of lint will send him into tears.

You spend each morning in an exhausting battle to dress him in clothes he can tolerate – because he cannot wear jeans, or buttons or zippers, or elastic around the sleeves. And no shoes ever feel right.

He can still feel the ghost of the tag you cut off of his shirt, the way an amputee still feels the ghost of a severed limb.

By the time he is dressed and on his way to school, you feel totally defeated.

At 8 am in the morning.

 

You advocate for him tirelessly, through classification and declassification and IEPs and 504s.

The years pass, and some new challenges emerge. When your marriage crumbles, and you are left on your own to deal with this beautiful child, you realize,

YOU CANNOT.

You are so depleted just surviving, you no longer have the energy to deal with his needs – which have grown so pronounced.

The hour of homework, which takes four. Sending him upstairs to shower, only to find him unshowered an hour later, lost in an imaginary world.

The morning dressing battles. His lack of spatial awareness, the constant clumsiness and touching and fidgeting and noises. His lack of social cue awareness, his inflexibility, his fixations.

 

YOU GIVE UP.

You hear yourself tell your friend, “I can’t raise him.

Why can’t he just be normal?”

YES. YOU SAID IT.

Not caring if she or anyone else judges you. For no one could possibly judge you as harshly as you judge yourself.

 

And now, his therapist says, “We must have him evaluated again. I’m fairly certain he has…”

You say it with her.

“ASPERGER’S.”

Because you knew.

 

And you’re drowning now, in an ocean of pain and despair. Unable to face yet another quest to unlock the mystery of this latest diagnosis.

Wondering how you can afford thousands of dollars of tests your insurance doesn’t cover; how you both will survive the nightmare trial and error of endless drugs and endless side effects.

How can you possibly keep him afloat, when you are sinking fast to the bottom of the briny deep?

You look up furiously and demand that God explain why he did this, when all you’ve ever wanted for your child was for him to have a better childhood than yours.

 

And then, you spend the perfect Saturday together. And you are reminded of his brilliance. His humor. You laugh together, all day.

That evening, you both snuggle on the couch. While you write this, his story, he reads.

Every so often, and for no reason at all, he looks up over his enormous library hard copy of War And Peace, just to say,

“I love you, mom. So much.”

 

You may be drowning, but he is not. With his beautiful spirit, endless compassion, soulful heart, keen wit – he is simply adrift.

And you will fight for him, as always. You will figure this out.

Yes. The turbulent waves of your uncertainty sometimes rock with indomitable fury, pushing away, only to crash and break, but he is the shore that grounds you. Your love for him is like the ocean; endless, chaotic, fickle, and profoundly deep.

And there is nothing more beautiful than the way the ocean always returns to embrace the shore.

 

 

Do you have a special needs child? Or know of one?

As a parent, do you sometimes feel like you just can’t go on?
Talk to me. I’m listening.

 

This version of Somewhere Over the Rainbow is sublime.
This is not the official video, but it’s our favorite. Filled with the images of beautiful children.

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537 responses to “He Has Aspergers” and Everything Else I Never Wanted To Hear About My Son

  1. 

    Thank you for sharing. You and your son will make it. You two together can take over the world. I have a son who has Aspergers. I tried for years to get a diagnosis for him and it wasn’t until he ran out into traffic to kill himself that he was finally diagnosed. Thank you. And thank you for being so open and honest.

  2. 

    I am in awe of your bravery, dedication and love. Most people would throw away a child if any abnormality arises. But you stuck by your child. You helped him bloom. Indeed, people with aspergers or any other mental health problems are a lot to handle but once you see and feel the briliance in them you simpli cannot help but smile and be proud of them. I am a psychology student and Ive seen first hand what fear and ignorance can befall on a child simply because he is different. I applaud you, amazing mother.

  3. 

    i FEEL

  4. 

    Your son is blessed to have you as his mom.

  5. 

    Beautifully written. A lovely portrayal of a parents love and frustration. I work with teens on the spectrum – never met more amazing people in my life.

  6. 
    girlmeetsworld3093 January 28, 2015 at 8:54 am

    I am studying this at university. I’ve met many mothers. But I’ve never encountered one quite like you. Your honesty inspires me. And from this one post I can see glimmers of the abundance of strength and perseverance you possess. Thank you for this read. You are a very talented writer, as well as an amazing, loving, soulful mother.

    • 

      I am a special education teacher of 15 years, who has decided to start a blog here, to celebrate the gifts of “fierce little warriors” like your little dude. How lucky he is to have a mom who embraces and celebrates his creativity. I just created my account, and you are officially the first blog that I am following, because I deeply value your authentic, unapologetic and honest voice. I have not even written my first blog post yet, but you already sparked a voice deep within that has been “silent all these years”. I have two daughters of my own, who are 4 & 3, and I would consider them lucky to have a friend like your son!

  7. 

    I hope you always feel blessed. May God give you exactly what you both need. Thank you for loving your son. He is a blessing and a handful at the same time.

  8. 

    Reblogged this on Irenadawn and commented:
    This is simply BEAUTIFUL! For the first time I really think I might get what a parent feels about a special needs child and I even understand more about Aspergers . Thank you so much . I am following to learn more . I am a teacher and I cannot have children so to me that lets me show love for them all in different helpful ways . I can’t be a parent ( not as special ) but I can sure help when asked and put my most positive foot forward to help parents in any way raise smart, healthy, kids with high self esteem ! Give me all the ideas you can to help me help your kids ! 😜😜😜

  9. 

    It hurts my heart to read these words. But, do not despair! I have to tell you that your son is an Angel, born to teach you and everyone else he knows! Bless and heal this Angel and his Family! He can be functional, just trust and follow you intuition. I am here to help! L.O.V.E.

  10. 

    my cousin has aspergers, and people sometimes poke fun saying she is crazy. Im deeply hurt all the time because i understand her, she is very beautiful and smart for a 10 yr old. they just need to put in extra effort to stop making negative comments that keep bringing her down, now that she understands what insults mean. i try my best but the insults get to me too sometimes.

  11. 

    Beautifully written Samara. Although the saying goes “when you meet one child with autism, you’ve met one child with autism” this should be the story for all the moms out there. Your feelings of hope, then the mourning of what could have been, then survival, then defeat, then advocate, then despair, then moments of joy, are so parallel to mine. Rollercoaster it is and I hate the parts where I just want to puke. But all in all, there are some great thrills.

  12. 

    Two. Two times I set out on this journey. All the twists and turns, therapies, worries, joys, and ten dollar socks . . . they are men now, we are still on the journey together, still in search of the perfect pair of socks 🙂 Beautifully written. So very beautifully written.

    • 

      We’ve given up on socks. Sometimes his feet are cold. He’ll live.

      Thank you so much for reading, for commenting, for understanding, and mostly for fighting the good fight for those boys of your own. xoxooxox

  13. 

    My kid did have colic and/or some digestive issue…but just with those months of dealing with that, or on days where J is just in a shitty mood and testing me at every turn, I feel so overwhelmed and I think “I could never do this by myself…” All I can say, it’s hard to imagine it being that way all the time, and I have mad awe and respect for you.

  14. 

    He sounds like a wonderful boy, and he is very lucky to have such a fierce and dedicated advocate in you. My 14-year-old has an Asperger’s diagnosis, although his issues are not as severe as what you describe. I wouldn’t really want him to change, because he is who he is and he’s delightful in many ways, but the challenges are exhausting sometimes. (We gave up on socks long ago. He wears Crocs year round.)

    • 

      *Fist bump of Croc solidarity*
      Yep! Some battles are just not worth fighting.
      Thank you for reading, and commenting, and most of all for understanding. xoxox

  15. 

    I have never had my son officially diagnosed, but he definitely has something going on. I have researched everything from ADHD, Asperger’s, SPD, ODD, you name it and he fits about half or more of the criteria for each. He hit and bit and rolled around on the floor at preschool and even started a couple ‘riots’ in which he started chanting ‘We want recess.” until the rest of the children joined in. He is 16 now and still horribly frustrating on a daily basis because of poor impulse control, but when he was 3-8 I figured he would have had to be sent away somewhere by now so he wouldn’t kill anybody as he got bigger and stronger, so that’s a pretty drastic improvement. I never got a diagnosis because I knew I didn’t want to medicate him. I think it would dull some of the really awesome things about his personality and I didn’t want to give him (or myself) an excuse to quit trying to do better.

  16. 

    Parenting of a special ability child requires the heart of a saint, the body of a soldier and a community of angels.

  17. 

    You are my hero, Samara. I’ve watched a friend struggle with her special needs son – clueless, desperate, hopeful…are just some of the words I would use to describe her from the moment she knew the baby in her womb was a Down’s Syndrome child…She fought to see him healthy and happy and at many levels he was. Sadly he couldn’t fight a chest infection and passed away at age 7, changing many lives in the short time he graced this earth.

  18. 

    My 15 year old has Asperger’s, diagnosed when he was 10. Like you, it brought a sense of relief; I knew what I had to work with. We have gone through many of the same things that you have but I wouldn’t want him any other way.
    Today, at 15, he is an amazing kid. Everything is still black and white; sensory and social issues are still there but he has strategies to cope. And he has a sense of loyalty and commitment that I see in no other teen. Ask him to do something and it is done. When he sets a goal, he achieves it. He can work with adults and kids alike and always gives 100%. He has two part-time jobs, 500 community service hours under his belt (our province dictates 40 to graduate; he loves to give back) in the past 18 months, does well at school, sings in a top-notch choir, runs, and coaches soccer. He is not a “normal” kid by any means but he is thriving and he is respected.
    Hang in there. It will get better.

  19. 

    Keep writing. Your style and perceptions are as strong as the story itself. Few Blogs matter much. Yours matters a lot.

  20. 

    Yes- I have a high-needs autistic/psychotic adult brother. He is lucky enough to to have supported accomodation and a supported work environment. He is funny, witty, and very clever. He also ‘loses it’ completely if triggered (sorry, Cliff Richard, but you are one!) and yells, screams, shouts, and attacks things around him physically – not fun when he is 120 kilos+, and ambulances have been called when he has ‘ lost it’ on public buses etc. But I never lose sight of the gorgeous, strange, loveable, white-haired boy who was our brother, and his awesome minimal emails to me, and the fact that he reaches out to me as his big sister. So much more could have been done, but we did not understand this syndrome in the 1970s.

  21. 

    I know of no mother better equipped to kick this in the ass. You are an amazing lady – and it is no surprise to me that you are raising an exceptional child. You’ve got this.

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