Avery Grace

Avery Grace

Tuesday, April 7, 2009


From the moment your child is conceived and onward, the choices we make as parents become subject to all kinds of judgment. Sometimes critical and harsh, other times well meaning and heartfelt, but judgment nonetheless. Timing of pregnancy, whether to find out the sex, how to take care of ourselves during pregnancy, whether to consider a c-section or induction, to breast or bottle feed, to vaccinate on schedule, alter it a bit, or skip it all together, to let kids cry it out or not, to co sleep, or start them out in a crib... and so on and so on. It is endless. Everybody seems to have advice to give, and opinions to share, when really, we are all doing the best that we can.

This world of critique also exists, and can even be far more intense, in the community of special needs parents. I am on several online support groups, and the because the treatment options for a child with Autism are so vast, the outlooks on how to move forward can and do vary drastically depending on who you ask. As if we aren't under enough stress, anxiety and despair with our child's diagnosis, now we are being judged by therapists, doctors, other parents, friends, online acquaintances, and family as well.
It astounds me.

This is why I have purposefully left out some of the more controversial topics related to Autism diagnosis, treatment, and even prevention on this blog. I don't need the backlash. But really, shouldn't we all give our selves a collective "break" and admit that sometimes we make mistakes, but in the big picture, we are all just trying to make the choices that work for us and our families.

I don't want to be afraid to admit that Kaylin has yet to have had the first vaccine because I truly believe they haven't been tested enough on children with autoimmune issues, and can't even fathom why they haven't done a simple comparison on vaccinated verses un-vaccinated children and the rates of Autism in those two groups. I don't want to worry what people will think of me when I tell them my daughter is NOT on any of the special Autism diets because I don't want to take away one more thing she likes and enjoys in her life that is hard enough. I don't need to be concerned when others snicker when they hear about some of the more alternative approaches we attempt... until they have walked in my shoes, they know nothing of desperation and longing to reach your child again.

With a heavy heart this week I watched as "experts" in medicine argued theories on causal factors and Autism, and felt the stab in my heart as one even stated that "regressive autism" doesn't likely exist as it is most likely related to parents "missing" early signs. SCREW YOU Dr. Expert!!! I have VIDEO to prove my daughter HAD and lost skills.... she is the definition of regressive Autism. I have a masters degree in child development and not to mention over 8 years experience working with kids who have Autism. I am not an idiot. But thanks for nothing.

I am tired of not knowing answers. I am sick of walking on eggshells. SOMETHING is making Autism an epidemic of gigantic proportions! A new study in the UK discovered that 1 in 60 kids has Autism. When is enough enough? When are people going to stop judging, and come together to figure out why? It's the WHY that haunts me and keeps me up at night. It's the WHY that makes me want to come unglued.

I am OVER being critical of how someone parents. Unless a child is being neglected and/or abused, how they choose to feed, put to sleep, medicate, and treat their child is none of my concern. I welcome useful ideas, but what we need is SUPPORT, not anguish. My 3 year old can't sleep at night, and sometimes we rock her. My almost one year old slept in the bed with us until she was 9 months old. I choose to breastfeed, but I do it because it helps me bond, and I don't have to clean bottles. Avery was on a bottle after the breast until she was well over 2. She also still eats baby food from time to time because it's the only way I can get her to eat some veggies. We do ALOT of things "wrong," but we are getting by. We all have to do it our way, and just because my way is different, doesn't make it detrimental.

I think we all feel somewhat insecure about the choices we make, which makes the differing opinions of others fuel our already abundant guilt. Let's try, all of us, to let it go.

It is worth repeating: What we need, what I need, is SUPPORT.

Avery is having her surgery on Thursday. Part of me is a nervous wreck, and I feel a tremendous amount of guilt and anxiety about subjecting my sweet and unknowing daughter to pain, fear, and more pain. Please keep us in your thoughts and prayers, and remember that April is Autism Awareness month. Remember that we are all giving this our best. Remember that it is not our place to judge, but to love and build relationships based on truth, equality, respect, and adoration.


Antonia said...

This is a powerful and moving post- There are no real answers in this path you are traveling on and I think about you and your family often and will be sending little Avery lots of prayers. You are an inspiration!

Anonymous said...

Anyone who would judge any parent who has a child with a disability and how they handle that child needs to be given the opportunity to care for that child daily. There is nothing easy about having a child with a disability. I love to read the writings you post. I don't have a child with a disability but I worked with a family who had 2 children with autism and it was a stressful household. Teachers in/out 8 hrs a day 5 days per week. Avery is SO fortunate to have a mother is aware of autism and can get her the best treatment possible. Keep up the good work and don't listen to doctors who have never walked a day in your shoes.

By the way, my son just turned 4 and he still eats baby food fruits and veggies. Who cares??????

I hope to make it to Dallas soon so visit you all. I went to college with Bryan. I just need to see when Lani is available.

I hope all went well with Avery's surgery.

Julie Volkland in KC