Things I Wish Everyone Understood about Autism, My Child, and Me

GoddessI understand that my child really had encephalopathy and mitochondrial dysfunction, but he is still officially diagnosed with autism and I need that label to get treatment.  So autism it is.  Until it isn’t.  A lot of us are like that.  I like the idea on the website “STOP CALLING IT AUTISM,”  but that is what doctors, schools, therapists and everyone else we encounter calls it.  I’m not fighting that battle today — I have another calling – but I am glad there are people out there that are.  It really should be called what it is.

At first I really hated autism.  I was at war with it.  As a dead-end diagnosis.  And by dead-end I mean that the developmental pediatrician basically told me there was nothing I could do, nothing that would help his drooling, head-banging, and constipation, and to join a support group to “get through it.”  What I have come to understand is that I do not hate autism.  At all.  And I definitely do not hate PEOPLE with autism.  At all.  What I do strongly dislike are doctors who do not have enough experience to know that there is a lot of hope out there and that children like mine can get better from symptoms often associated with autism.  And do.

When I say my child will recover from autism, that is not a slight to anyone who identifies themselves as autistic.  I wish that the neuro-diverse population would understand that if my son functioned in Harry Conroy 1society as well as they (as a generalization) do I would be the happiest person on Earth.  REALLY.  I would do a Julie Andrews on a mountaintop.  I embrace all his unique qualities.  I celebrate what makes him special.  He flat out amazes me each day – really.  I love every single bit of him.  I do not want to make him dull and normal in the worst sense of that word,  BUT if I had not intervened I’m not sure he would even be alive at this point.  He had seizures, severe malabsorption and nutritional deficiencies, and the two sides of his body did not work together – he couldn’t jump.  He had severe reflux and vomited after every meal.  Sometimes he vomited bile.  I thought he was deaf – I tested three times.  He never burned or tanned.  The sun really bothered his eyes and, oddly, he sneezed in the sun too.  He was severely constipated no many how many jars of prunes I fed him.  He looked like a child they use on a hunger poster from a third world country.  But I fed him and fed him –  he just couldn’t process any of it.  His liver function was so low that every doctor was amazed he functioned at all.  His head swelled up after his well-baby visit:  He was in the less than third percentile for height and weight (he was a twin) but overnight, his head circumference went from the fifth percentile to the sixtieth.  He banged his head over and over to get to sleep.

And that still haunts me.  It has been years since he banged his head in pain, but a few months ago he was frustrated and banged his head on the wall.  I literally had a PTSD episode.  I could not breathe and had a hard time keeping it together at work that day.  Every once in a while, that happens.  It’s scary when it does.  It bothers me how close to the surface those feelings still are.

When I tried the diet – the one that my pediatrician and the developmental pediatrician said not to try – my son turned to his name for the first time.  And his severe reflux disappeared overnight.  I knew then that I could get him back.  And when I say “get him back” what I mean is this:  I had a child that was in severe pain.  His body did not function properly.  He had a laundry list of medical issues.  I knew then that I could treat those.  As each medical problem resolved, he made great gains and a little bit more of him shined through.  I do not want to squash what makes him, him.  EVER.  I love this child more than I can ever convey in words.  He is love and light personified.  Quite literally, I believe, an Angel on Earth.  He is goodness and pureness defined.  He is so much a part of me, and he has taught me so many things:  patience, appreciation, acceptance, awareness, perseverance, determination, and pure, blissful joy.  To watch him finally say Mama at the age of four  – there are few things that have ever come close to that beautiful, beautiful moment.  Because of him, I have made the most amazing friends who share similar experience.  I have become a better person.  A much better person.

I do not want to “cure” my child of autism.  I do however, want to continue to solve the medical issues he has.  So far we have solved for seizures, malabsorbtion, liver function, constipation, elevated nagalese and viral issues.  We have healed his gut.  He no longer bangs his head or lays over the arm of a chair to give his stomach some relief.  He has better oral tone and he no longer drools.  He has great eye contact and is cuddly and loving.  He plays with his sister and brother.  He is really smart, and at five he is reading and knows all the things he needs to know in kindergarten.

But we are not finished yet.  His most pressing issue now is apraxia.  He is at or above age level receptively, but expressively he is nowhere near where he could be.  Where he will be.  He can sign to communicate, but I know he wants more.  He communicates with me in many other ways and I know with every fiber of my being that he wants to experience speech.  At least one person a week calls to tell me that they dreamed of my son, and he was talking in the dream.  I don’t think it is accidental that this happens so consistently.  He is starting to say many more words, and a few 2 -3 word sentences.  I am so glad I never accepted the “fact” that he might not ever speak.  I cannot wait to sit in his audience a few years from now as he acts in a play, or reads an award-winning story he wrote to the crowd.  I will continue to be the believer because he needs to know that we fully expect him to gain his voice.  Every day I tell him that I am so happy with all he has accomplished, that I love how much he is talking to me.  When he comes home from school he breaks out in a huge smile and literally runs to me and flings his arms around me, hugging me tight.  He knows, and I know, how much we love and support each other.

I have never treated my child as a science experiment, and I have logged thousands of hours in research.  I do not believe you need an MD after your name to understand how to read a scientific study.  I never take a new intervention lightly.  I am not reckless as I understand that what I do will impact my child, either positively or negatively, and I engage and employ specialists to help us.  I cannot stress that enough.  I know that some treatments carry a degree of risk and I would never forgive myself if I caused my child harm.  I will not, however, allow fear to condone inaction.  I do assess, reassess and evaluate before, during, and after each intervention we try, and often that leads me to what we will try next.

I don’t understand when mothers like me are accused of not loving, or wanting, or accepting their child.  All I have seen in this community, for as long as I have been a part of it, is moms just like me who love fiercely, who sacrifice anything and everything to help their child reach their full potential.  I want to state for the record that I do not judge you if you feel differently.  If your child is not in pain, your experience is definitely different from mine, and I respect your position.  But I ask that you respect mine. I think about that old poem that everyone forwards you after diagnosis.  I love Holland; I’ve learned and grown there, but I also love wine and pasta, and we WILL be stopping in Tuscany soon.   Spaghetti is my son’s favorite food; it’s only right he get to taste the Italian version of it.

Harry Conroy 2Most of all, no matter where we end up on this journey, I will always do my best by him.  I will guide him and help shape him as he navigates this life.  I will love him and learn along with him, and I will support him in every way a parent should.  As he grows older and expresses more, I will respect his opinions, and we will make decisions together until he enters adulthood.  I will not leave this community even when we no longer qualify, and I will always be a Thinking Mom.  I will make a difference on a global basis and give back to the community that took me in and gave me hope in ways that will continue to evolve.

My hope, in writing this, is to help build a bridge within our fractured community.  We are all in this together.  If your autism is different than ours, that’s okay with me . . . not that you need it to be.  But I support you.  I do not reject you in any way, and, if my son grows up independent and able to advocate for himself, well, I’ll be happy as can be.   If your autism is like our experience, I will tell you what we did, and who we worked with to help you bring your child out of pain.  Because no child should have to endure what my son endured . . . and not another will if I have anything to say about it.

~Goddess

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38 Responses to Things I Wish Everyone Understood about Autism, My Child, and Me

  1. Danielle says:

    Bravo to you!!! You said what I have always wanted to say!! Can I ask how you combated the drooling? We have not yet found something that works :(

  2. Kris says:

    Beautifully said. I absolutely agree. I am recovering my son so he can live his happiest and healthiest life. I love him more than anything in the world and I don’t want to change his quirky personality, but I will fight to change every little thing I can that affects his ability to feel happy and healthy and realise his potential.

  3. Jaci says:

    My oldest has DS & apraxia and the apraxia is by far the biggest issue!! We’ve started special apraxia therapy and he’s finally making progress but unfortunately people take him at “face” value and don’t expect much!! That’s the only thing I “hate” about DS that it’s obvious unlike ASD
    So I feel ya’!

  4. Marie says:

    I loved reading your piece, nicely written and inspiring. Would love to know what helped your son!

  5. Lisa Crutcher says:

    Beautifully said! You have helped so many parents on this journey. I know you’ve helped me many times! So thank you!!!

  6. Paula glass says:

    What really burns me up is the lack of insurance support for kids with autism. It makes me so angry that not every state recognizes the costs involved with caring for a child with autism, and I’m not just talking about doctors appointments. I’m talking about the intensive behavior and academic therapy needed to help kids with autism meet their learning style and the dietary requirements that help them absorb everything their bodies need.

    • Thinking Moms' Revolution says:

      You are so right. I couldnt agree more – we have been fortunate to have good jobs and supportive family members. I still think you can do it without spending a fortune (check out Kerri Rivera) but it does help. There are grants out there and people willing to help if you let them. Good Luck.

  7. Courtney says:

    Fantastically done! It’s so hard to be in a community that judges you for striving for recovery. I accept everything about my son and love him more than life itself….he is my world. Acceptance as a word doesn’t even cover what I feel towards him. But I know who my son is. I lived, laughed and loved with him for almost two years before he disappeared. I’m sorry it’s different. I want my son back because that is who he is, I want him whole again, I want him well. I wish others could understand that. It would make our journeys so much easier.

  8. Kathleen Brooks says:

    I can’t tell you how comforted I am to know that I, we, are not alone in this. Thank you so much for writing this. I am in the midst of the battle with my son and struggling to keep my head together through diet changes, supplements, the whole nine. Thank you for encouraging me to keep going!

    • Thinking Moms' Revolution says:

      You are SO not alone. There are, unfortunately, so many of us. We are at the tipping point though – be loud and be strong. Tell your story to save other kids. And you can save your own too – I’ve seen it happen. Recovery is real :)

  9. Judith says:

    Wow, beautiful article!! I do recognize that I do fight the label; not my daughter, but I want to give her help. Not because I have higher expectations, but because I want that she can be herself. My daughter is not in the physical pain your son is in; but my daughter has mainly sensory issues. And I have the feeling that the images in her head and the sensory stuff are making it difficult for her to express. She is cuddly, and I do recognize that she is pure, and a real angel, she taught me much about keeping faith and letting go, having trust, living in the moment, trusting my own instincts.
    I feel who she is, I know her, she is smart, brave, she just needs some more time and space to cope with. On one hand she developed very fast, on the other hand she created a delay. To me it is unfair to stuck her to the label autism and thats it.
    I had difficulties also expressing myself as a child; very sensitive, feeling a lot of thoughts and feelings from others, trying to please everyone and loosing myself in it. Smart but afraid to show it, very insecure. And if you have sensory stuff going on (I did too and still do I know now) it can make it a bit more complex to keeping up with the other kids. I became very verbal; I can guide others in their feelings and thought because I can sense them and translate them to words. What, not empathic? How? I heard a lot in life that I was to sweet, to good for this world, maybe I had that same purity my daughter has? I have faith in my daughter. She just needs some more time and space. And she seems to learn topdown, so that wont make it easier in an average school. Now it is as if she cant learn, she wont; but at home she started writing at 3,5 y/o. She started bilanguar at 18 months, still has a speech delay, while she can speak difficult words, making jokes and real meant compliments, outside of the house she has way more difficulties speeking; sensory stuff? As a mom I just get frustrated, my daughter seemed to have seizures too; but the pediatrician wouldnt look into it because my daughter was already diagnosed with autism, and autistic kids kan make weird faces and such, or tics (Her eyes turned white on more occasions, while eating and talking people at the same time, now she just avoids those situations, twitches in her face which didnt really look like a tic, and we thought of absence seizures). I want to help my daughter, not just a label to put her away. I want to help her develope to her own potential, and that she can be who she is and will be acknowledged and respected for that!

    • Thinking Moms' Revolution says:

      Get a new doctor. Look on the askdrsears.com list to start, or ask on our fb page. there are good doctors out there that can help.

  10. Shel Moore says:

    Beautifully said! I don’t understand the fractures within our community here either…never have. Like you, I refuse to give up hope on dreams and the efforts we’ve invested in therapies, medical care, and research have paid off tenfold. Uneducated doctors should never squash the hopes and dreams we have for our children. Ours told us initially that our son may never talk, never say he loves us, never have any independence. I left the assessment in tears crushed over four years ago. Today, my son is becoming a regular motor-mouth with dreams of becoming a secret agent when he grows up, and engaging more every day. Today, he’s mainstreaming Kindergarten and has mastered all but one core skill as of his first progress report. If I’d believed in the words uttered by those docs in the beginning where would we be instead? I, like you, truly celebrate each and every one of my son’s unique quirks and interests. I have learned so much from him and continue to become a better person myself each day because he is a part of my life. I’m thankful for the few brave doctors we’ve encountered on our journey thus far-as well as the teachers, therapists, and other professionals on our team. The diet (GFCF/Non-GMO) has helped immensely-as have holistic medicine (NAET), various supplements, and OT. I’ve learned that doctors will never care as much as I do to read the research available that provides clues to understanding the underlying health concerns that ultimately cause my son’s autistic behaviors and with each successful discovery we succeed in improving his health, well being, and learning abilities. The truth is that many of these therapies may help so many of our children, but the dogma throughout the medical community is thick and so many are resistant to accepting change. Autism IS medical for many of our kiddos. That does not mean we don’t low them for who they are. How are we wrong to give the the best fighting chance possible for a truly independent life, when possible?! If environmental factors weren’t contributors to the cause, then how could these biomed interventions provide so much improvement for my son? We must come together and respect all sides of our struggle because the prevalence rate is not decreasing, but instead rapidly increasing each year! Why are today’s doctors not better informed on autism today? Why isn’t this required study in med schools across the country and when will politicians stop dancing around vaccine damage predisposition? The evidence that connects the dots continues to stack up in favor of a vaccine-autism link-and if you’ve lived it, like we have, each small victory proves that recovery is possible for some-despite the advice from appointed experts.

  11. Karen G says:

    What you wrote has really resonated with me. My feelings and journey with my son son are son similar to yours. We’re farther along in our journey, my son is 14 now and has come so far! He’s talking, socializing, and doing so many things I could only dream about! Thank you for sharing your heart.

  12. Filly says:

    So beautifully and lovingly expressed Goddess! I loved it!

  13. Judith says:

    I cried as I read this…we went trough something similar. You said it perfectly.
    I was able to see it soon because it was my second child. We started treatments early: Supplements, diet change, homeopathy, naturopathy, and energy healing work(Neurolink, BodyTalk). The last two really help with adjusting the brain, language, removing energetic blocks to healing, and sensory integration disorder. He is in normal school, talking, reading and socializing well. We are very grateful.
    And I also do the energy healing for me to release all the pain, sadness, guilt, fear, anger and frustration that I stored during those hard times…Time to be free and keep going from a loving, centered place.
    You are so right, we are in this together and no one should go through this!
    Best of luck, you are an amazing, courageous mom. Keep going!

  14. TxMom says:

    Beautifully written. Thank you.

  15. Allie says:

    I LOVE this…every single word. Beautiful, beautiful job!

  16. Stephanie says:

    Loved this article. My heart breaks for you and what your son has had to endure and of course for you and your family as well. Your progress is amazing, keep up the good work and if you “cure” his autism you should be quite proud of that. No shame in wanting the best for each and every one of your children.

  17. Jackie says:

    I hear you. The world is a very confusing place for my son and if I could change that for him, I absolutely would.

  18. Mary Cavanaugh says:

    Beautifully written and expressed! You go Mama!!!

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