Avery Grace

Avery Grace

Friday, April 24, 2009

Hardest Part

What's the hardest part about having a child with Autism?

Depending on which parent you pose this question too, your results would be as varied as our children themselves. For some, it's the inflexibility... the difficultly some children on the Spectrum have with changes in routine, trips out of the home, new environments etc. For others, it might be the challenges some children have with receptive or expressive language, or both. Or that your child doesn't smile at you very much, or laugh with you, or even look at you.

While there are "core deficits" that all or most children on the autism spectrum have, for the most part, they are as different as any two neuro-typical children would be. They are individuals with various strengths and weaknesses. My child, like yours or any other, is special and unique, quirky and fun. But she is also disordered and sick... but we choose to define her as angelic and amazing.

The hardest part for me is the unpredictability of it all, and the absolute unknown about both what caused her to regress into this condition, and what is yet to come for her development, health and overall capabilities. I hold a tremendous amount of hope for her, and am perhaps her biggest fan, but really, I have NO IDEA what lies ahead. It is something I have really had to learn to deal with, and even more, to be at peace with. For me, this has been the biggest challenge.

I can handle the stares. The dirty looks. The pity. The financial strain. The lack of language. The indifference. The meltdowns. The sadness.

and I am learning to handle the unknown. The unfairness of it all, and the resentment.

It's not that I am resigned. I am FULL of hope. But I am also learning to be okay with the "what if's." What if she can never talk? What if she can never live on her own? What if she stays locked inside herself? NONE of these things do I want for her... but I also want to move on. To be okay with who she is, and not spend her life wishing she was more. She IS so much more. She is my heart, and extension of my soul, and my every wish, hope and joy all wrapped up into a little, silly, happy, non-verbal 3 year old.

Will I spend our every last dollar ensuring we get her the best medical, therapeutic, and natural intervention available. You betcha.

Will I always wonder if I had made different choices would things be different. A little bit.

Will I worry about my needing to live forever to care for her. Every moment.

But more than all of this... Will I enjoy her for WHO she is, for what she CAN do, and for the grace, love, inspiration and hope she brings to my life every minute of everyday. Absolutely.

April is Autism Awareness Month. Be aware.

Please check out the team Avery's Aunt and Uncle created to raise money for Autism.


Tuesday, April 21, 2009

Tonsillectomy Drama!

My apologies for the length of time that has passed since our last update. My role as mom is now blended with "nurse" as I have been helping Avery around the clock as she recovers from the removal of her tonsils, adenoids and the placement of her ear tubes. I thought this would be "no big deal" and BOY was I wrong!!! We are on day 12, and she has YET to take a drink of anything on her own, and is only just now starting to willingly eat a few things. She has been on the verge of dehydration since the surgery, and I spend much of my time drawing up fluid into a syringe and shooting it into her crying mouth so she will swallow. Good times.

The nights are the worst part. I guess her throat dries up and the pain is unbearable so she wakes up screaming. Last night was only one time, but before that we are talking about every hour to hour and a half of painful whimpering or full blown hysterical crying. I also think the narcotics were starting to make her crazy. As if we don't have enough issues... now I have a drugged out 3 year old with Autism who is starving and dehydrated. Let me assure you that if I knew it was going to be this hard... we would have waited a few years until bribery or reasoning was more effective with her. Lesson learned.

But, what doesn't kill us makes us stronger, right? Let's hope so, because at the moment I feel pretty worn down.

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.

Friday, April 3, 2009

New School

We've had some big changes around here! Avery turned three last weekend and though it was too cold to go to the zoo as we had planned, we quickly adjusted and had a fun day anyway. Avery also started her new school. She is in a PPCD-TLC class which stands for: Preschool Program for Children with Disabilities- Total Language Class. It is at a nearby elementary school, and so far she seems to be adjusting well! She is the only girl in her class of five kids with 3 teachers, and all of the kids have moderate to severe Autism. She will get Speech therapy, Occupational Therapy, and Physical Therapy as part of her school day, as well as all the additional therapy we supplement privately (including more Speech, PT, neurofeedback therapy, ABA and RDI). The most difficult part of the whole week is getting everyone ready, fed and out the door by 7:25 am, so she can be there around 7:30am. Since neither of my kids are good sleepers, especially Avery, this will certainly take some getting used too.

Though I choose to celebrate every laugh, every look, and every interaction with Avery, I must admit that her turning 3 was a little bittersweet. As she gets older, the differences between her and her same aged peers are greater and greater, and our every moment of every day can seem to revolve around her disability. Taking my "just turned 3" year old to a public school is also mind boggling. She has experienced the joys of preschool where her teachers love and adore her... but somehow this is a bit different. A bit more institutional. But I have every hope that it is the right place for her to be. I have every hope that she will thrive.

Kaylin is now eleven months old, and not to sound too much like a cliche...but I really don't know where the time has gone. With your first child that first year seems to drag on and on... but with the second, it has flown by. Kaylee (as we call her) brings lots of noise and fun to our family. She is sure to be heard, and is a spitfire in every way. So far her development seems on track, and since she doesn't have Mastocytosis, we have every reason to believe it will stay that way. Avery having given us the beautiful gift of perspective, we have learned not to compare, not to borrow trouble, but to just enjoy Kaylee for the neat and spectacular little person she is becoming. I am beyond grateful that she is part of our family, as she adds so much character, spunk and JOY to everyday.

We don't worry about the small stuff. We don't agonize over the economy, or performance, or what might be. We have endured what we once thought of as inconceivable, and have stared fear in the face and come through stronger than we ever imagined possible. How lucky for us that we got to learn these lessons through the eyes of our beautiful child, and that BECAUSE of her, we will live our lives more fully, and with a perspective that allows us to experience complete joy and acceptance of our children no matter what.