An Open Letter to Pre-Regression Friends with Children

Juicy-FruitI am so glad for you that your lives have moved forward.

I know you stopped calling because you didn’t know what to say and you felt bad that we were in different worlds.   I know I stopped calling because for a long time it hurt too much to see how your well child – my child’s peer until the MMR ate his brain – is such a rock star.

When you asked me recently if I was bitter, I was so surprised.  How could anyone not see the bitter written all over my soul?

bitter poisonI did everything right – had a midwife instead of an OB, declined vaccines for the first two years of my kid’s life, breastfed, used cloth diapers, de-chemicaled my house, etc. And my son still regressed after a delayed MMR at 30 months. He was perfect – walked early, talked early, even potty trained early at 2 1/2. And then he regressed into Autism.  At age nine, he’s not playing instruments in elementary school.  He’s not reading.  He’s barely conversational (and let me tell you I’m thrilled, because until just a few months ago I would’ve told you he’s non-conversational and now we’ve graduated to barely.  It’s a huge difference).

It is really hard to turn off the little voice in my head that says “What if . . . ?” And when confronted with the reality of how truly far behind his peers he is, it’s even harder. You better believe I’m bitter about it. Because it’s not fair. And if one more person tells me that the universe doesn’t give you more than you can handle, I will scream. I keep myself held together most days with spit and frayed string. Regardless of how well put together I seem, I am really not.  It barely takes anything to derail my composure.

After the regression, we became insular.  We focused solely on getting through each hour, because it was too much to look further ahead than an hour.

My social life dwindled to nothing.   You didn’t call, and I didn’t call.  My marriage hit rocky times, and I still didn’t call . . . There was nothing we had left in common to talk about – you didn’t identify with a five-year-old smearing poop on the couch and screaming all night long, and I couldn’t shift my focus out of my world long enough to relate to yours.

bitter poison2Then I connected to other autism moms online.  I realized that there were other people on my same path, and I made friends with them. They don’t mind the bitter – they have their share of it. They ‘get’ poop smearing and sleepless nights and marriages in rocky times as a result.  They are my best friends – they are the ones that I call in the middle of the night when I can’t stop crying.

We don’t get milestones in the autism world, so we celebrate the inchstones.  I know that in your world, a nine-year-old asking for presents to be put under the Christmas tree seems blasé, but in my world it’s call for a giant celebration, because until this year, he’d never noticed.

I don’t expect you to celebrate with me.  I understand your life is now about what I dreamed of – a gifted child, reading, playing music, having friends.  I also understand that’s not my life.   I am really truly happy for you, and I want you to know that I am glad for you that this is the life you got.

And I will celebrate the life I have.

~ JuicyFruit


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9 Responses to An Open Letter to Pre-Regression Friends with Children

  1. Jaelyn Grace says:

    You read my thoughts!

  2. JLiz says:

    Thank you for sharing this heartfelt experience. It brought tears to my eyes and I can understand how you feel. I worked fulltime with children with autism for 7 years and there was not a day that went by that I didn’t admire the strength and determination of their parents. I was able to go home after 8 hours working with their amazing, yet at times very challenging child, and their day was just beginning. I now have twin, two and a half year old daughters of my own who were born 6 weeks early and have been on the fence about the MMR vaccine after conducting much research. I just finished reading your article about eczema being a red flag and low and behold, my 3 pound preemie twin has severe eczema which started the week after the DTaP vaccine was given at 6 months (which was the only vaccine she had gotten). As she still struggles with her eczema daily to no avail (modified diet, vitamins, topical prescriptions, etc.) and I have to watch her suffer and scratch her self until she bleeds, I feel intense guilt that I didn’t follow my gut and avoid/delay vaccinations even further. Both daughters also suffer from multiple food allergies as well. Thank you for your article because it reinforces that no matter what age the child receives it, the MMR vaccination has risks that outweigh the benefits for children who are immuno-compromised as my daughters are. Stay strong and continue to be an advocate! You never know how many other children’s lives you are impacting from educating and sharing your story with their parents. God Bless you and your son!

  3. Karin Schuetze says:

    Thank you for your heartfelt article. I think you capture the feeling that so many of us parents share. I am thankful everyday for my friends that help support me and bolster me and my family on those tough days. Parents that walk a similar path understand in a way that others just don’t. I think that parents of a child with autism have an almost immediate bond. I am also very thankful for some friends of mine who do not have a child with autism, yet have embraced us and walked our path with us as well. I know those friends are rare, because they don’t have a child with special needs, but somehow can still empathize and are there as a true friend when I call. So thanks for your article and just bringing to light those treasures we have called “true friends”.

  4. nhokkanen says:

    Thanks for sharing your spot-on insights. Observing the various reactions of family and friends to vaccine-induced autism is highly instructive about their priorities, and changes to our pre-regression selves. Autism’s wake-up call broadened my depth of concern about personal tragedies and questionable public policies. How tragic that the clear vaccine injury patterns of uncounted children are pompously dismissed as “post hoc ergo propter hoc.” Science investigates.

  5. Billie says:

    Oh dear god how I wish I had you guys in my life.Friend what are those :/ Grateful to at least have a supportive husband <3

  6. JSB says:

    “inchstones.” So. Perfect.
    Loved this article.
    Thank you!

  7. Maryann says:

    You know you are one of my best friends. One of the people I truly love in this world. And I have been on the same exact road as you. Sometimes we pass each others, sometimes our paths diverge through the woods and we can only catch a glimpse of each other through the trees but we ALWAYS come back together. Because we are on this same journey. Even though Matthew has “recovered” he still struggles with things other “normally developing” children just “get”. I text you all the time from Karate telling you how he is struggling and how much I need a drink (just a joke folks) to get through another lesson. I don’t have a lot of non-special needs friends. Most don’t understand at all. And interestingly the ones that are non-special needs parents are actually children of folks with Alzheimer’s, something my family is dealing with too. So see they are the same people anyway. As we get older we find our tribe. Sometimes they are people we have known before, but very often they are new folks that can walk with us. Bitter. I know it well. I hope that the other autism moms, and myself, can add some sweetness to that bitter and make it bearable. Love you girl!

  8. Amazing Juicy Fruit…simply amazing..
    Lost friends are one of the many things I have greived on this journey.

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