I have often looked at this image, and thought, this is the closest thing I can find to show how I believe my Autistic 4yr old daughter sees the world. With her being the RIGHT brain.
She sees & feels (literally & non literally) things so differently, and it’s not a curse or a disability… it’s an amazing gift. She’s going to do something amazing in her lifetime, something others could never imagine accomplishing, I just know it. I don’t know what it’s going to be, but she surprises me so often by what she does know, and what she can do.
When raising a child with special needs, so often our attention is on what they can’t do (when compared with their peers), and helping them learn to do these things, or to adapt a new way to do these things. So many times abilities are measured by societies standards instead of measured by the actual needs of the child.
As I was sitting at the school yesterday for a IEP meeting, I noticed a quote on the wall, and while I can’t remember it word for word, the point of the quote was this. Equity is not Equally. Children aren’t all the same, and being a good educator (which is what parents are as well) means providing what each individual child needs to learn.
Autism, when you hear that word what do you envision? For some it’s a child who’s a quiet wallflower who can’t speak, or it’s a child who’s loud and throws fits, and for others it’s an adult who’s never quite fit in, misunderstood, has been taken advantage of, a social outcast, and for others it’s YOUR CHILD. The word Autism covers the entire spectrum, and frankly that spectrum is HUGE and can mean so many different things. In fact that’s one of the hardest things about treating Autism, “A treatment method or an educational method that will work for one child may not work for another child. The one common denominator for all of the young children is that early intervention does work, and it seems to improve the prognosis.” – Temple Grandin
My Ava is Autistic, PDD-NOS to be exact and has Speech Dyspraxia.
Ava was diagnosed in Nov. 2011 right after she turned 4, but I “knew” since she was about 2 1/2 yrs old. My bright, easy going, always happy, smart little girl started to pull away from me. She didn’t want snuggles, or to read books with me, she refused to eat all but a few (less than 10) select foods, she asked for a Pacifier (she had not used one much as a baby, and hadn’t used one at all since she was 18 months), she would throw fits and become very upset when we were out in public, she didn’t retain things we told her, and she had absolutely no understanding of danger, and we couldn’t get the concept of danger across to her in a way she could understand. She stopped learning to communicate, and her vocabulary was approx 25 words, and no simple or complex sentences. She didn’t sing songs or mimic, she didn’t like “new” people and had a strong reaction to anyone that wasn’t Mommy, Daddy or Ayden.
Why did it take so long for a diagnosis?
I was told by her pediatrician and everyone around me at the time that; she would catch up, every child learns at their own pace, it’s all in your head. I will never forget sitting in my car bawling after Ava’s 2yr check up when I was told that I was “doing this for attention, there’s nothing wrong with Ava. She’s just a little behind.” NEEDLESS To say I never went back to that Pediatrician and she no longer is employed at that hospital. What a breath of fresh air Ava’s 3yr check up was! We met a new Pediatrician (who we ADORE!), and in that first check up, not only did she agree Ava was delayed, but she put a referral into the school district for ECFE, and Ava started preschool the following month. She also started the evaluation process to figure out what Ava’s need were and how we could get her help. We started with a ENT Full evaluation, because Ava has had some bleeding from one of her ears in the past, and well… Ava is LOUD. lol!
The ENT eval came back normal, she’s just got some “stuff” in her ear so we use Hydrogen Peroxide to help. The next step was to go over the school’s tests & findings. Those tests raised all kinds of questions.
Ava showed signs of; OCD, Anxiety, Autism, Speech Delay, Physical Delays (Fine Motor, Oral, & Large Motor), and Communication Delays (Verbal & Non Verbal). We decided to pursue a evaluation from Gunderson Lutheran, specifically a diagnosis from their ARENA assessment because Ava’s “symptoms” at this time were major communication delays.
After 2 long days of testing, we received the results. I actually giggled when we received the diagnosis, yep giggled right out loud. Part of it was due to relief that the tests were over, my concerns were noted by others, I was tired after “handling” Ava for the past two days of testing (new places & routines = a bad Ava day), and the main reason for the giggles.. “PDD-NOS is what we feel Ava’s diagnosis is because Ava is a complicated puzzle”. Really? Tell me something I don’t already know! I’ve been calling Ava those exact words for 2 years, my little complicated puzzle (who LOVES to do puzzles).
Any Autistic diagnosis can feel overwhelming, but PDD-NOS can feel especially overwhelming. Because there is no, this is what your child has, this is how to treat it. In fact the definition of PDD-NOS is to tell it is not.
“This category should be used when there is severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes “atypical autism” – presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.” 1
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., rev.). Washington DC: Author. (Pg. 84)
Frustrating huh? One thing that everyone agrees on, no matter where a child fits into the Autism Spectrum is that early intervention is extremely beneficial to the child. If you are interested in more information regarding how Autism is diagnosed, and signs to look for visit the Autism Speaks website, and check out the M-CHAT a (The Modified Checklist of Autism in Toddlers).
I think one of the hardest things for me about Ava living with Autism is how society sees her, and judges her before getting to know or understand her. Autism like many other things that affect us can’t be seen. We need to teach our children acceptance & understanding so society as a whole can change their point of view.
It would be so much easier if we all wore little name tags that told others around us how to react wouldn’t it? Like facebook statuses but on a ticker across our chest that updated every 30 seconds.. Mine would read, “Don’t wake Momma Bear”. Simple & to the point, don’t you think?
Seriously, though please STOP JUDGING, STOP BULLYING, STOP HATING. START LOVING.
I came across something on Pinterest (LOVE IT!) and it’s been sticking with me ever since…
Think about it. It’s so simple isn’t it?
So now that I am off my soap box, I will leave you with some pieces of Ava.
This first piece is one of the reasons for the soap box. Ava’s “EW” (pacifier). If you would of warned me of the looks, stares, whispers, gossip, the things I’ve heard through the grapevine about how society see’s Ava’s EW, and in turn me as a mother because of her using a EW at 4 1/2. I would never of believed you.
Ava is has Oral Sensory Needs, and since the age of 3 has used a EW. She will suck on it to soothe herself, or she will bite it (always on her left side) when she is stressed. She does not take it to school, instead there she uses a Chew Tube, or Chewelry (chew necklace) for her Oral needs. We’ve offered at least 10 different chews to her over the past year, but nothing holds a candle to her Ew. She loves it, She NEEDS it.
and sometimes, the EW just isn’t enough. Yesterday was a “Star Day” (out of her normal routine), we had to wait while her big brother did Karate.
She did this to her EW in 30 minutes and I never had a clue she was upset. She watched a movie in the car with a big smile on her face. She is getting better at communicating, but things like this remind me how much work we still have for her to be able to truly communicate her feelings.
Another piece of Ava is she loves PRESSURE. I was told by one of Ava’s therapists that children with Autism don’t feel the world around them like we do. They don’t feel the couch underneath them as they sit on it, they don’t feel their clothes on their body how we do, they don’t feel the space around them how we do.
Ava NEEDS Pressure, and she gets it in:
her clothing- we wear lots of “Dance, Dance” – leotards, leggings, tights, heavy dresses & skirts that move
her weighted blankets & lap pads
Ava loves to swing, we have a platform swing & this snuggle swing, we use both Ava requests the swing she wants and she knows which one she needs & when. After yesterday’s “Star Day” (different than our normal routine), she needs her snuggle swing (lots of pressure), she asks for Big or Little Pushes and tells us how many. We do this 2-3 times a day for 20-30 minutes. She also has swing time at school (she requests it). As you can see, she LOVES it. We sing, do flash cards, puzzles, social stories, & more while in/on the swing. Sometimes Addie joins Ava in the swing. Which has made their bond GROW 300% over the last 2 weeks.
I hope you’ve enjoyed reading about my Ava. She’s my beautiful butterfly, funny monkey & complicated puzzle all rolled into one.
My next installment will let you into our lives a little more, and will cover another piece of Ava… Sibling LOVE.