An unadressed letter

Next week, January 12th, my local Center for Autism and Related Disabilities is heading to the capitol to hand deliver letters reminding them who they are funding. They sent me an email asking for a letter and possibly a photo if I couldn’t come with them in person. CARD’s funding is cut year after year while ASD diagnoses rise exponentially. This isn’t just in our state of Florida but in all states. Consider writing your own letters to government or contacting your local government funded office to see what you can do to help.

Here is a copy of my letter, copy it if you’d like (change what’s not applicable) and email it in. I can’t really make it any simpler and you never know the impact you might have.

 

 

To Whom It May Concern:

I am the mother of five children. I take college classes at home on my way to becoming a teacher and educate my children at home. My husband works full time and is a Captain in the Florida National Guard. We’re regular people. Well, we thought so anyway.

On November 15th our youngest child was diagnosed with Autism Spectrum Disorder. While the news wasn’t a complete shock, the impact was still jarring. I didn’t know anyone with an ASD child. I didn’t know what this all really, truly meant for me and my son and our other kids. I didn’t know how to find the resources I needed to help my son. Time was ticking away for my child and I had no idea how to find the clock. I was scared, hurt, no…wounded. Hearing the word “autistic” felt like my world had crashed down around me.

CARD was there to help me pick it all back up. The 15th was a Tuesday and that Friday CARD had their monthly parent orientation. I was ten minutes early. I had spoken to relatives after the diagnosis and the conversations left me hollow and aching. I felt disconnected and disjointed. I felt alone. As I picked up the literature, was greeted with friendly faces of the CARD staff, I started to feel whole again. Listening to Margie Garlin explain how CARD worked and allowed me a glimpse into her life as an ASD parent, things started looking brighter.

Everyone in the CARD office was friendly, warm and helpful. The things I shared about my child and my fears, were met with kindness and understanding; something I hadn’t been able to find elsewhere. They offered me resources to help my other children and at a time in my life where we are struggling financially, the opportunities offered by CARD were life-saving.

I don’t feel that there is any other places in the country that offers what CARD offers. From the people they employ to the services they freely give, there is no comparison. To look at my son you would think he were no different from any other nuero-typical child, yet he is very different and there are too few resources available to allow him to become a meaningful adult that contributes to the world. With one in seventy boys becoming diagnosed every single day do not take away this service from them. This is an epidemic. Soon, we will have a generation with an enormous population disabled and unable to function in society. The small burden you may feel CARD has on funding right now will be miniscule to the explosive number of individuals that never received access to the services they so desperately needed.

Thank you for your time and consideration.

Sincerely,

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It changes nothing. It changes everything.

Autism. It’s just one word. We can discuss Autism all day long, the signs and symptoms, if it’s environmental, genetic or both. If it can be treated or cured or just left to be. If diet, drugs or therapy will help. We can talk about support groups, funding, public education and screening.  We can debate the history, progression and societal impact. We can evaluate the merits of weighted blankets, melatonin and communication devices. Or hash out IEP’s and treatment plans.

Whether used as a noun, an adjective or a verb, it’s just a single word but when applied to a person it becomes so much more.

It becomes a child, partner, mother, father, neighbor, student, cousin, friend.

It becomes my child.

And in that sense, we can still talk all day long but there would be a new spin on things. Because Max, isn’t just Max anymore. Max is autistic. Max becomes “my autistic child”. “My child with ASD.” Because in order to understand Max you need to understand autism. And in order to understand my life you need to understand autism. And if you don’t, we can have that all day long talk, I’ll even bring the coffee, but it will be for nothing.

Everyone tells me that this diagnosis changes nothing. That Max is still Max and in that I agree. He is still my smart, funny little boy. Still my last child and by default my baby. He’s the one that takes little shuffling baby steps away and looks out of the corner of his eyes when he knows he’s in trouble. The one that raises his eyebrows at new things in an “I don’t really think so” way, even when he refuses to look at you. The one that strips as soon as his foot hits the house floor and sometimes sooner. The one that fidgets sitting next to you trying to contort his little body to mimic your exact position. It’s endearing, and makes me laugh. It’s also Autistic.

And everyone that I hear those words from, that it changes nothing, doesn’t have a child on the spectrum.

In a way it really doesn‘t change anything and in an even bigger way it changes everything.

It changes our days. Some days we have therapy, NT kids don’t usually have that. It changes how I deal with him. It changes how his siblings interact with him. How I have to question whether this is typical 3 year old behavior or if it’s his autism and he just can’t help it. I have to second and third guess why he’s doing what ever it is that is causing him to “misbehave” because he can’t tell me. I have to guess at what is making him shriek at the top of his lungs over and over again. I have to ignore the stares from onlookers while we’re out and tip toe around snarky comments half whispered from the onlookers that have big mouths. If you’re an ASD mom you know the ones, the ‘whispers’ that are loud enough for you to hear even over the shrieks. The things they want to say to you but are too scared to do it to your face.

And then the comments that you don’t hear, the ones after you or they leave but that you can see in their eyes if you ever meet again.

It changes relationships with peers, friends, relatives. It changes how you deal with insurance companies, vacations and schools. Your future is different because you need a fail safe plan if your ASD kid never becomes independent and you die. You need alternative means to communicate if they never speak. It changes sleeping arrangements, grocery shopping, clothes. It changes how we evaluate “safe” places and when and where we can do things, because sometimes, somethings just aren’t going to work for my autistic child.

It means that I spend an enormous amount of my time researching and learning how to care for my son. It means that I have less time for everyone else. It means that if I want something for him I have to go out and get it because no one is going to do it for me. It means that I get to talk about autism all the time to people that couldn’t give a flip so that maybe when they want to give “that look” or whisper when they see another ASD kid out there maybe they’ll think twice. It means the first thing I get to do when we move is look for ASD doctors and therapists in addition to horse back lessons and ballet for the NT kids. That the baby sitter I need to hire can’t be a flaky teenager but someone actually qualified to deal with ASD children or be willing to learn. It changes how much money we have and where the money we have goes. It means that other might have to change how they deal with us, coming here instead of us going there, not getting bothered when we don’t call or realizing that I’m not being unthoughtful if I forget something but that my thoughts are just too full. And listening to me use the word “autism” more than once in a conversation and not getting annoyed because, guess what? I’m an autism mom, now. It changes who I am.

Ignoring it isn’t going to change anything though. Telling me he might grow out of it or making ignorant comments about his development isn’t going to help. You can pray and hope and wish all you want, and by all means, please keep my kid in yours if you don’t mind. But don’t tell me it changes nothing because all you’re doing is making me feel that my feelings are petty, that all of these changes I have to make are meaningless, that I don’t have a right to my level of stress or helplessness or loneliness or overwhelm. That dealing with Autism isn’t a big deal and it tells me I can’t count on your support by belittling the enormous changes I actually DO have to face.

And for the simple fact that you’re wrong.

Autistic Photo Shoot

On Christmas Day I took the kids outside in their new fancy clothes to take some photos. My in-laws have been asking for certain shots for a while now but taking Max to the mall to get photos done is just not going to happen. Our last set of professional photos was on his 1st birthday and let me tell you, it was horrendous. The photographer was patient but it was Hard.

So hard, I hadn’t taken them back since.

I think a lot happened Autism-wise between that 1st and 2nd birthday. Fast forward to his 3rd birthday and it’s a little sad the lack of photos we have of them all together. I tried over the spring (before we got a diagnosis, this was the time I just thought he was “hard to handle”) and this is what I got.

Chaos theory - Applied.

Max sleeps in late because he has a hard time settling down at night (that’s another post!) so before he was awake I took the big kids out to do their photos, it was by far the best photographic decision I’ve made. I was able to shoot at leisure the older kids before Max got up and dressed. When he joined us the shoot went downhill quickly but I improvised as best I could.

If you look really close you’ll see my brown slippers and the hem of my jeans behind my daughter’s legs. Max was not interested in standing facing me. It was really helpful to have another adult on hand (which I didn’t have in the spring photos) to man the camera while I handled Max. I have a few more like this but with Max degrading in mood when he realized that I was behind him yet he wasn’t allowed to move to me. After the group shot I tried to get a few of him alone. What ended up working was me running backward as he chased me. I’d go as fast as I could then kneel down and quickly snap as many shots as I could.

I was able to get some really great EYE CONTACT! shots with this method. He looks so big *sniff*.

I should have probably looked up advice from professional photographers on how to shoot Autistic children but I rarely do things the easy way. I did find on my own, these things helpful:

Use natural lighting, my vision sensitive kid HATES flash and bright lights. Also, we know that the flourescent lights in stores/malls disturb him. Also try and use either mid morning or mid afternoon lighting (which is just a regular photography tip).

Pick a time of day that is *best* for your child, mornings are better for Max than afternoons.

Be the photographer or be *in* the photos. Max has a strong attachment to me and sitting on the sidelines wouldn’t have worked at all for him with someone else giving direction. Max is leery of strangers so inviting someone in that was new probably wouldn’t have been best. See if you have a familiar person in your family that could do it for you if you lack the skill or equipment to get the types of photos you want. I have a DSLR with amateur skill, for me that works. I’m okay with the product, though I do want to learn more about photography.

Know your kid. Which sounds stupid but sometimes we need to remember that. We want a picture to look a certain way and that just won’t work with our children. Max hates clothes (he’s nude about 85% of the time) so trying to get him into a nicely pressed suit wouldn’t have worked, instead I chose comfortable clothes that wouldn’t irritate his sensitivities. I chose the location outside our front door, knowing that car rides, strange places and strangers would exacerbate any uncooperativeness he’d display.I made sure I had photographed all the other kids in various poses before even introducing him to the environment. Once Max arrived “on set” I only needed a couple shots, 1 of him with all the kids and 1 of him alone.

Work fast.  Do I need to explain why?

Have low expectations. Trying to get that *perfect shot* is just going to make both you and everyone else frustrated and make what could be a fun time into a hot mess. Do I have the best photographs? not really, but they’re perfect to me because I have captured all of my kids together at a moment in time. I can look back at them fondly and smile, remembering Max and his difficulties with a positive spin instead of remembering the hair-pulling-out emotions I still remember two years later at his professional photos in the mall (he had darted from the store more than once!).

Have fun! Nothing will upset your child more than you barking orders at them to smile or getting frustrated with the lack of cooperation. Work around their sensitivities, incorporate things they like or will draw their attention, instead of yelling “Cheese!” to Max I yelled “A!” because he’s super interested in letters and that grabbed his attention. I ran and he chased, another thing that draws him out of his bubble.

Stop when the child needs to stop. There isn’t any good going to come by forcing the subject no matter how much you want that “one forward facing photo”. Learn to like profile shots.

 

What has your experience been photographing Autistic children?

Home School and Heart Ache

Six weeks after I had my first child I got a position in a daycare as a childminder. At the time it seemed like the perfect solution to my problem of not wanting to separate from my son. I still had the job downtown at the real estate firm waiting for me. I had toured the childcare centers in that area, had found one that was close enough for me to take my breaks, dash across the street and breastfeed my baby. But with every center we looked at I felt the same empty pit opening in my gut, the one that sucked all the air from my lungs and blood from my veins.

My mind kept repeating the same phrase as I looked around the rooms that looked too small for so many kids, the playgrounds that seemed under supervised,  “How will they know what he needs? How can I grow my bond with my child if he depends on others to care for him?” the broken record jumped and scratched against my conscious. It led me to leave a $25k a year job (which was pretty snazzy for a 20 year old high school drop out) for $8k and free child care.

I worked at the daycare for three days before turning in my apron.

I just couldn’t do it any longer. Each time I looked in on my baby he was alone face down on the floor, or his bottle propped under the chin of the worker while she rocked one kid with her foot and spoon fed another applesauce, or alone again in a crib on the far side of the room away from anyone’s notice. Every day I left the daycare with my little boy wrapped up against my chest and cried.

And that’s when I stopped working full time and took on being a full time mom.

When school-time came and my little boy, now a brother twice over, was supposed to be picking out miniature back packs for three hours of “school” a day, I couldn’t do it. I have a very hard time thinking that anyone else knows more than I do about my child or could care for them more than I care. Since Alex started reading, spelling and writing at age four (that’s a WHOLE ‘nother spectrum post) I knew that pre-K wasn’t going to cut it for him.

That was when we started homeschooling. That was nearly six years ago.

Since then, we’ve welcomed two other children into our lives and no one has been sent to daycare or institutionalized schooling. I think they’re thriving. I know they’re smart. I have a pretty good idea they’re happy. But life doesn’t always go the way you want or need it to.

My ASD child is proof of that.

And now we come to the base of the mountain, the one that erupted in front of me the moment the doctor diagnosed Max. It’s gigantic, splotched with hues of blue and purple, it’s white cap hidden behind a thin veil of gauzy cloud. I can see it, see my toes touching it’s massive base. I can crane my head, my eyes moving up, up, up and never truly see the top. My hands have found some edges to hold, my toes some crannies to wedge into as I start my ascent over this mountain called Autism.

But one question that popped up just as instantly as that mountain did is “What about home schooling?” I have to wonder how this will all work. How can I home school four NT (neuro-typical) kids and meet the demands of Max’s therapy requirements? How can I choose which group, the NT or the ASD, is more important than the other? Because that’s what it feels like I have to do. I have to either sacrifice home schooling for therapy or  the copious therapy for home schooling time. There just isn’t enough of me to do both and not enough hours in the day for it if there was. As a mother, how do I pick one child’s importance over another?

Do all ASD children go to school? Does every family with ASD kids send the NT ones to school? I’m having a hard time finding resources for home schooled ASD/NT blended families. Or even ASD home schooled ones.

I feel alone. Hurt. Torn in half. Faced with an impossible challenge even bigger than Mt. Autism. And at the end of each day I still haven’t figured it out. I sit listening to the broken record playing a new question, “What do I do?”.

And no one and nothing is answering.

Product Review – Boba Classic Baby Carrier

I literally cringed over the price tag of this carrier. Four NT kids and Max’s infancy and I have never spent this much on a carrying device. But with that last sling I knew I needed something. Max loved being close. So, the Boba Carrier got ordered. This one has child size recommendations, up to 45lbs, which gives me another 18lbs for Max to grow.

At first he was like “what? I climb on your back? seriously?” but with facial expressions, not words. I swear his facial expressions are so, well…expressive, half the time he doesn’t even need to speak. As soon as I stood up though, he figured out riding on mommy’s back was a Very Good Thing.

The first time I used it I just took him on a little trip outside, probably less than 5 minutes. I just wanted to see how it worked and felt before deciding if I wanted to take it on a longer run.

 

That was Saturday. Today (Tuesday) we were having a “fragile day” so I pulled out the carrier and strapped him on my back. Instantly, he quieted and I was able to walk around the house, even sit at the computer and fold laundry with him happily secure with me. I wore him for about an hour.

I’m still building up my core strength so I had started getting tired. Max freaked out as soon as I took it off (but c’mon I HAD to go to the bathroom!) but after he calmed down went on to have hours of really fantastic time. He eased through transitions, took a bath without fuss which he’s been really rejecting lately, ate and even became more verbal. It was truly a miraculous thing

His legs did get little marks if they dangled for too long but we’re talking half an hour here, not less than 15 minutes. This comes with feet stirrups that I haven’t put on yet so he can put his feet up and take the weight off the backs of his thighs. I need to put them on. There are four adjustment places; the chest, the waist and under each arm so I can make these areas as loose or tight as I need to relatively easily.

The miraculous inner workings of my house.

He’s not so heavy right now that I can’t get up and down without assistance  but I can see that being a problem for some. I also had to make sure I kept my abs tight and my core stable or I’d start hunching forward which after another hour session in the evening really took a toll on my shoulders. Getting on the back was easy, IF he’s compliant (which he was because he loved it) the front really needed another set of hands to clasp the chest buckled shut. I could release it but not maneuver my arms behind me to clasp it. And the buckles are HARD to clasp which is good because they won’t accidentally become unclasped but you do need a little arm strength to get them together.

For long term, all day wear, I can’t say toting a 27lb 3 year old is going to work but for short periods of time scattered throughout the day this is definitely going to make my life easier. I liked the back wearing better than the front though we tried that out too. On the back he can lean back better which gives him great space to play on my iPhone or drive cars on my back.

Overall we give this carrier four puzzle pieces out of five for comfort, ease of use, the pretty pattern and safety.

Please vote for Max

Today is Christmas. It’s also Max’s third birthday. It’s also the first day of Joovy’s holiday photo contest. Joovy (the manufacturer of one of the strollers we’re looking at for Max) is giving away a $200 credit to their store for the winner of their contest (and 2 runner up $100 credits). Please take a moment to vote for our Christmas baby Max. You can vote for up to 5 photos a day (one per photo) and vote every day starting today until December 31st.

I appreciate any time you’re able to take to vote, this would really be a blessing to us.

 http://promoshq.wildfireapp.com/website/6/contests/175416/voteable_entries/40491477

Happy Everything.

Happy Everything, folks. Focus on the little things, the small strides, the tiny miracles because those happen every minute of every day all around each one of us and when we forget to look at them, passing over the small points of light looking only for the brightness of the sun, the world becomes a dark and scary place.