“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, 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 and you realize another child is out of the question.

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 treatments.

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.

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

  1. 

    This is the 3 chap. Of 2 story..
    http://www.dayinfo.tk
    Hope u will like this..
    If any suggetion please give it on my fb page link is given on blog

  2. 

    Hi, this post resonates with me on so many levels, i read it as though reading my life back to me. My son has aspergers and mild tourettes. He was diagnosed at the age of 2 as autistic. The struggles you encountered, i feel every one.
    I too am now on my own as my marriage collapsed.
    Beautifully written and i have been searching for how to write about my little soldier. You have inspired, thank you. x

  3. 

    This is a beautifully written essay about what it is like to have a special needs child. I’ve been a SPED teacher for four years. I’m always amazed at what parents go through with their children, how they have entered a world that no one ever expects and can’t understand unless they lived with it on a daily basis.

  4. 

    A beautiful, soulful, heartbreaking story, written by a mother who is stronger than most can realize. I wish you and your family peace.

  5. 

    my son is 8 and HF Spectrum Great Little People

  6. 

    Reblogged this on strikeforceshooting and commented:
    Both My sons are on the spectrum one 8 on the Team the other little one 5 early intervention , i did not want or believe it either, it took a long time, but it gets better!

  7. 

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

    Words to live by with Aspergers.

    It is us who may choose to have the problem. They are wonderful kids who experience life slightly different.

  8. 

    How did I miss this gorgeous heart-wrenching piece of writing from one of my best blog-crushes? How, how how?! Just gorgeous. You as a Mom, your son as a wonderfully unique and powerful force, and your writing, all gorgeous.
    Last Christmas my (perfect SAT, single, actuary, used-to-get-beat-up-in-high-school, 38-year-old) brother sat next to me as I set up a FB page for him. He sipped his scotch and asked, “Jennie? Do you think I have Aspberger’s?” And I almost screamed, “Yes, yes, yes!” Because he so totally does, which I, as a teacher, had suspected for years. And when I asked how he felt about finally knowing this, he sort of grimaced/smiled and said, “Good. It’s a relief, sort of. You know. To understand it and have a name. It’s not just me.” or something like that. So cheers to you for figuring out your amazing child now, for empowering him with your love and attention, for facilitating his self-knowledge on a thousand different levels, not just diagnoses, but as a whole, kooky kid. Cheers to you. (And Happy Thanksgiving, blog-grrl.)

  9. 

    Be strong!!! But know that God is graceful. Accepting. God loves you. And maybe you should have a glass of wine today. 😉

  10. 

    My son just turned 26, he was extremely challenging to raise and still takes a lot of positive energy to be around, but a mother’s love is undying and I see so much potential there. All those tests make us stronger. He has friends, a job, a house of his own. He is making it, on his own terms. Sometimes letting go of our own ideas and releasing them to their lives is the toughest thing, but they are here for a reason and we don’t always see what that is. We just have to trust that they have a soul contract and are fulfilling it. On the divine plane, we are all loved unconditionally. I strive to see my son in that light. Love and blessings to you and your son.

  11. 

    So beautifully written. I’m so sorry for all the pain. I too, have a special needs child, now 13.

  12. 

    Wow what an emotive piece of writing! I’ve recently worked a little in s Special Needs school and have a great interest in helping children with ‘additional needs’. I believe as a parent you should keep your child happy and safe and you know if medication is right or not. Also make sure you’re getting some respite, everyone cracks at some point and it’s a tough situation to face. No one expects that when they have the privilege to bring a baby into the world. Your Son is normal and he sounds like a great character!!

    Apparently most people are on the Autistic/ADHD/Aspergers spectrums and it just shines through fewer people. I believe these are the real gifted ones who express emotion in the most honest and open ways a human could.

    Keep writing, you’re great!

  13. 

    Thanks for sharing your story. I have a friend, in his 20’s, who has Aspegers and one occasion I accidentally toughed him and he sqealed at me liek I had stabbed him. I had no idea a simple touch would elicit such a severe response. I am now careful not to touch him

  14. 
    unbelievablyunbounded November 29, 2014 at 3:16 pm

    Wow, this was one of the most painfully beautiful stories I have ever came across. My best friends sister has Aspergers and your honest post has given me great insight to her relationship with her. Thank you for writing this. Keep on keeping on.

  15. 

    I have a son with Aspergers and ADD, and it is the hardest thing I’ve ever done to raise him. I can totally relate to each thing that you said here, including how we are our own worst critiques. I judge myself harder than anyone else every could! You are brave, you are stronger than you think, and you WILL get through this with him. They’re special and so are you!

  16. 

    Oh, come on! Having a Asperg son isn’t so bad! Would be worse to have a normal child, which is dimwitted and dull and tries to get some attention by rubbing two sticks together. “Look mommy! I invented fire!” – “Son, you weren’t the first!”
    Be glad with what you got and remember – no one knows your son better than you. Dont let anybody say how to raise your child.

  17. 

    I love you. If you were my mother, I’d be fiercely proud of who I came from.

  18. 

    You are just being realistic about your child and voicing out your fears . The thought about the future is quite scary and I understand that. I am a caregiver of a boy with ASD and in the beginning the parents were also in denial about their child’s condition. Full acceptance is the first big step in dealing with your child. Love your writings about him. Tug the heartstrings. Remember this, no matter what, your child is a beautiful soul inside. Don’t ever give up. 🙂

  19. 

    Beautifully written!
    You seem like an amazing mum – that might just be why your son interrupts his reading to let you know that he loves you!

  20. 

    Autism has become the new “big ugly” word in society today that everyone fears. The struggle and down right fist fight of coping and parenting is real but you hit the nail on the head when you mention that one perfect day. As a parent, no matter what the battle, it only takes one good day to remind us how beautiful, special, and completely priceless our children are – just as they are! I’m sure the quality of your son’s personality far out ways the quantity of his struggle. Sending you lots of love!!

  21. 

    Thanks for sharing. I know you may not feel it, you sound like an amazing mom and an amazing person. I’m a therapist and I deal with some very similar kids from time to time, thank you for sharing. It gives me more insight into what parents are going through.
    http://jwolffblog.wordpress.com

  22. 

    Beautiful…. As a mother of a premie it is difficult to hear what the doctors have to say, even more difficult to hear the only option is a “script.” For us all they talked about was surgery. God plants his seeds where he knows they will be best cared for. No need to plant a shade tree in the Sun.

    All three of my children have special needs and as an educator it is had when you know what they need, but you spend hours explaining to others why they need it.

    Keep fighting for you Angel, you are his biggest advocate.

    Lakisha Tucker

  23. 

    My brother has it too, its not that bad actually
    beautifulremedies.wordpress.com

  24. 

    This reminds me of a song “if love is an ocean wide, we’ll swim in the tears we cried. We’re gonna make it. If love is a raging sea, you can hold on to me. We’ll find a way tonight. Love is an ocean wide.” Having two siblings and a nephew with Aspergers, as well as a brother with dominant sociopathic traits, I have seen how hard my mom and sister battle for their children. There is never a break from the struggle, but God is always there providing love and strength and hope. I now have the privilege of working with kids that have different needs on a respite basis so their parents can have a day to themselves. I work with my therapy dog, Hero. I come away from it feeling like I was given so much more than I was able to give. I don’t know where you live, but I hope you are able to find a place that could help care for your son like that. Like Dorey says, some days you gotta “just keep swimming”. I’m so glad that love is an ocean wide.

  25. 

    My twin sister and I have Aspergers. Not nearly as severe as your son has it but enough that we struggle with it at times. My sister has it a lot more than I do and it’s hard to watch her struggle trying to figure out herself and the world around her.
    You are a very strong woman 🙂 I wish you the strength to carry on and love all the blessings that come from this whether they be small or big . Many hugs to you and your son.

  26. 

    Simply beautiful. This story really has opened my eyes today. It may me feel better in a way that, what I am going through now is nothing compared to what you are dealing with. And I am more thankful for my life and daughter. God bless and thank you for sharing.

  27. 

    Incredibly beautiful, heart wrenching & so deeply honest. I can’t pretend to know how this feels as a biological mother but as the (now ex) step-parent of a boy who displayed ADHD, ODD, SPD, OCD & Asperger type behaviours from around age 2, so much of this reminded me of how I felt.

    I’m with you on the avoiding the medication route, in the UK the medications prescribed to children with these ‘disorders’ is stopped when they hit 16 or 18 (I can’t recall which), I think it’s far better to help your child manage their behaviours and hopefully prepare them for the world around them in a natural way rather than medicate them to diminish the behaviours & then have the medication withdrawn and them not know how to cope.

  28. 

    Your son is truly beautiful, keep being strong the two of you! 🙂

  29. 
    Paula Nolan Photography December 26, 2014 at 1:54 pm

    Wow that is a wonderful piece. I can relate to so much of it. I have 8 year old twin girls with Aspergers. I wrote a blog about them in September and it got a great reaction. I love how you write. Your descriptions of your boy are so vivid and lovely. Well done. You’re doing great. Here’s my piece about my girls. Hope you like it.
    http://paulanolanphotography.wordpress.com/2014/09/05/double-trouble/

  30. 

    My son has Aspergers but he is not in need. I am. In need of his continued presence in my life, in need of his quit wit, the depth of his pale blue eyes that seem to look beyond the boundaries of this limited world. I committed to allow him to develop without dulling medication and therapists pointing out that he is different. But he is, in the most magical way and he is loved beyond words. Watching a child with Aspergers grow is like watching the creation of a masterpiece.

  31. 

    Wow, Sounds like my story written for me. I went through many doctors as well as many diagnosis. One day I said I am the best doctor for my son and read everything I could. I found that many diagnosis were incorrect as each one has similar symptoms. What I did know for sure is that my son does have ADHD and was doing him unfair not allowing him to take the medication so he could concentrate in school. At age 14 my son welcomes taking his medications because he states it allows him to stay focused and get excellent grades in school.
    As a single parent I spend every minute I can tutoring and staying involved in my sons life. I find many of the issues he had at a younger age resolve themselves as I don’t give in and allow them to stay on the surface. My son use to bite his nails until they would bleed, causing him to have to wear gloves to school. He would put eat crayons and many other things that were not food. He would not be still in class causing teachers not to want him in there classrooms. I learned that when a child has an IEP parents can ask for what ever they want. The school district had to hire a paraprofessional to shadow him in school and help him with his work. I soon found out how smart my son actually was but was unable to focus. I was against medication until I spoke to a friend that had made the choice to put there child on medication. Best decision I ever made. My son is now in control of his emotions and is loved by all his teachers and peers. He has self confidence in which he did not have in the past. I did have to try a few medications until we found a good fit. Overall my son still has issues but many resolved themselves.

  32. 

    Thank you, Samara, and every commenter here, for helping me realize that my 21-year-old’s milestones will be reached later than expected, but love and understanding will ease his transitions. Who cares if he doesn’t fit “normal” expectations of graduating from college at 21/22, moving out by 24/25, etc. He’ll get there, or wherever he needs to be. We just have to stop worrying and sometimes let them follow their own drummers.

  33. 

    Both my siblings have aspie… I understand your challenges, but your working and creating a beautiful soul. Never forget that.

  34. 

    This is a good post. I have aspergers, and so does my son, now 8. I’m a single dad, and he’s not my only child, but the one thing I get is him. It’s ok not to make sure he has the perfect socks and the perfect meals, because he has to learn to adapt to the rest of the world as well. There will be nobody in the real world to care about his idiosyncrasies, except for him.

    He’ll do fine. Don’t fret about how to make his life perfect, have him also examine why it bothers him about the socks, and give him tasks like how can he make it better. One day, he’ll be successful, and he’ll buy his own $20 socks because really, they are comfortable.

    Don’t baby and over parent a child with aspergers. These kids, and these adults, are awesome problem solvers…let him start solving his problem, and you, Mom, just watch him and see how he attacks these problems 🙂 You’ll see creativity there. Don’t stress too much either over some of these things. He’s your child, just be easy and mentor him. It’ll make it easier for you also.

  35. 

    Thank you for being there for hurting parents…as a doctor I work with all types of individuals and at times reaching out to parents fears can be challenging. I will refer those who need understanding to your blog…I know it will help. Thanks again!

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