Our Daughter’s Diagnosis

Our Little Girl

I’ve had that burning need-to-cry feeling in the tip of my nose for 3 days now and it won’t go away. There just isn’t a time or place that I can have a good cry and so I’m struggling emotionally to spite that fact that I really have no cause. There’s been no tragedy and our daughter’s diagnosis was expected, long awaited even. It’s a relief to have the label of Autism so that I can get her school to offer appropriate services and start therapy. Yet… I’m feeling bummed out and hermit-y. I don’t really want to talk to anybody for fear of a crying jag and also because it hurts to talk about my baby girl and be forced to really think about what Autism means for her. I can’t be bothered to get dressed. Jeans and a bra, how dare you? I just need sweatpants, to snuggle with my dogs and avoid the outside world for a while. It would be so nice to stop being a grownup for a few days.

We’ve been on this road since Stella was a toddler who seemed a bit more temperamental than one would expect. Over the past 4 years we’ve become more and more certain that there was something going on with our little one and have visited the Family Doctor or Pediatrician periodically to ask for help. Real progress came about a year ago when Stella was 5 and I told the Pediatrician point blank: “There has to be something diagnosable going on here. We need to start the process of evaluation whatever that is.” I got a referral to the Seattle Children’s Autism Center but no help immediately because they had a 9 month waiting list. I was already at the end of my rope and now they wanted me to hold? I had no choice so that’s what we did.

7 months later, 2 months before the start of Kindergarten, I was still waiting and becoming more and more nervous about how she would fair when I’d have to send her out into the fray without me, her advocate and the only person who knew how to handle her. So I visited the Pediatrician again, expressing my concern. She referred us to Occupational Therapy while we waited for the evaluation. Even without a diagnosis we could go to therapy and work on her sensory and social issues. I was amazed at how well she responded. They knew how to reach Stella in ways that made sense to her. It was an emotional experience to watch her understand concepts we had struggled with and to see immediate results. This helped my nerves immensely.

I also met with the counselor at her elementary school prior to the first day to let her know that I had a special kid who was, as yet, undiagnosed but who may have trouble in school. I tried to prepare our girl and to smooth the way as much as possible. By the start of school, she was super psyched and I felt as ready as I’d ever be. We’d already waited a year until she was 6 to start school which allowed her more time to mature and was hugely beneficial. What a difference a year makes!

Now, 3 weeks after the start of Kindergarten, we finally have our Autism Evaluation and have been given a provisional diagnosis in just one visit: Autism Spectrum Disorder. They say she has what was previously been referred to as Asperger Syndrome. The diagnosis is provisional because we still have to follow up with a Neurodevelopmental Pediatrician to do further physical tests. So far I’m told that she’s high functioning and that her physical symptoms seem mild.

Diagnosis is a relief in some ways because my husband & I now have credentials to hold up for the people who shake their heads at our concerns. Many believe that the “antics” of difficult or troubled children to be natural childhood behavior and that fussy parents like us just aren’t handling them correctly. This opinion has mostly come from our elders who perhaps take the differences in recent generations’ child-rearing methods as a personal affront. We have the benefit of science and research that simply wasn’t available to them 30, 40 and 50 years ago. So naturally there’s been a little fine-tuning to the task of raising young’ns.

It must seem smug and condescending when today’s new parents hold up our newfangled rules and standards in contrast to the way we were raised. I can only imagine how annoying that must be.  Some naysayers try to tell us that many of these mental disorders didn’t exist 50 years ago (or today for that matter) and that somehow we’ve caused Autism or are just making it up. It’s nice to be able to say, “See? We weren’t kidding and we’re not the lazy, over-indulgent parents you thought.” My Mom calls it vindication, and I’m trying not to see it that way. Diagnosis really isn’t about (well for the most part anyway) saying told ya so and I don’t want to be that person. Advocating for our daughter isn’t about me but today I’m feeling a little self pity. I really need some time to shake off the sudden depression so that I can move ahead with all the energy and enthusiasm needed to keep fighting for her future.

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An Open Letter to Moms Complaining About Public Assistance

Delilah making mommy a silly-face
This was taken the month we started collecting food stamps back in 2008. We had no idea what financial strain lay ahead.

To Whom It May Concern:

Your posts on Facebook and Twitter (complaining about the hassles of getting free food) are hard to read because it’s kinda awkward to watch another person make an ass of themselves, even in writing. I hear where you’re coming from and suspect you just don’t know any better. Maybe you were spoiled as a child and are self-centered as a result. Perhaps you’re spoiled still as is evidenced by the fact that you post from your smartphone and spend a sizable chunk of your income on manicures and cigarettes while complaining about your unfair circumstances.

We can all sympathize- to a point- with whatever it is that’s wrong with you which makes you act this way. It’s understandable that you have a character flaw but may not be aware of it. How could you be? Such flaws generally cause a person to believe themselves infallible. Your constant need for attention practically forces you to broadcast all your perceived troubles on Social Media in shameless attempts to garner sympathy and attention. You’re clearly unaware of how your whiny indignation is annoying to those of us living in similar circumstances yet still managing to behave like responsible adults. We’re over here wincing at your loudmouth rants about a system which you benefit from and should be grateful for yet somehow are the opposite of grateful: entitled. You’re a mess of your own making. Please stop. Big girl panties, now.

One can only assume you have no idea how low class and selfish your public complaints make you sound. So, from someone who understands, I want to break it down from one broke Mom to another in the essence of Sisterhood, but mostly because you’re making the rest of us look bad. Oh yes, I’ve been in your shoes and can relate. You’ll find no self righteous condemnation here, my friend.

My husband & I received “Food Stamps” from June 2008 to just this past spring, 2014. We still participate in WIC for our son and each of our three kids are on Government provided health insurance. I’m what some people refer to as a “Welfare Mom”, though we’ve never actually collected Welfare, ever. The recession hit us hard since my husband was, at the time, working in new home construction and we had just bought a home 2 years prior. We fell hard, crashed & burned but learned a lot and are thankful for the wisdom and fortification that hard times gave us. So I have a lot of experience jumping through the hoops involved in benefiting from Public Assistance.

After all the years we’ve collected Foodstamps & WIC, I’ve come to appreciate how much red tape was involved in collecting those benefits. I figured all that free help was worth the hours it took to get someone on the phone-being disconnected over and over- or the hours spent waiting my turn at the DSHS office with two toddlers in tow only to find out I was in the wrong place or that I had the wrong paperwork. I decided to be thankful for what we received even though there were constant mistakes and hassle working against me to take advantage of that much needed help. My attitude was, “This is how I work for it”. After a while I got pretty good at navigating the system and it’s pitfalls.

Reality check: Be thankful. It would be in your interest to stop complaining about the hassles you endure in the process of receiving free assistance. Trust me, people will pay more attention to what you say- a benefit that surely appeals to you- if you sound less like an undeserving ingrate and more like you’re trying to make the best of it. I mean, we get it, but nobody’s impressed by your “hardship” so buck-up. Say thank you to a government employee and mean it. They’re overworked, understaffed and being chewed out by people like you who seem to think they’ve called Amazon Customer Service rather than DSHS. Funding cuts always seem to hit the programs we rely on most and so their job cannot be easy. It’s unfortunate for the un-manicured, unselfish, hardworking folks who are also collecting benefits to be painted with the same brush as you. However, due to that unfortunate character flaw which causes you to behave this way, I suspect this advice will fall on deaf ears. One can only try.

Warmest Wishes,

from Someone Who’s Been There

6 Reasons Moms Dread the First Day of School Too

I love when our kids are on summer break. We can play and explore while not having to watch the clock or stick to a rigid schedule. Another perk: casual dress and messy hair are totally fine. For them I mean. I’m a mess on the daily so more of the same here. Also I don’t have to be strict on bedtime which is nice because… laziness. Yep, summer is legit. Let’s itemize the reasons back to school sucks shall we?

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1. No more sleeping in I like the quiet summer mornings when my kids are sleeping in an hour later. I watch tv or do dishes, while slupring my mocha in peace. Me time, ya dig? And then when they do wake up all they want is to watch a show and stay in their pajamas for a while. This is the polar opposite of mornings during the school year.

2. Handing Them Off to Total Strangers We’re asked to blindly trust the public servants who will have our children at their mercy. Trust that they are competent in their job as educator and not at all abusive or creepy in any way. That’s a tough one to swallow.

3. Breaking the Bank Our school has a uniform policy which will be sorely missed when our daughters start middle school. It’s affordable and it’s an equalizer. But for two years we were in a different district that did not have uniforms and so I can speak from experience here: Having to keep our daughters stylish in order to give the mean kids less fodder isn’t cheap. However we still buy nice new backpacks, shiny light-up shoes, hair accessories that they’re sure to lose… It all adds up so bend over and kiss your cash goodbye.

4. From Playing to Sitting Still All summer long I push the kids outside to run and play and be fit. To get their wiggles out and to breathe fresh air. Recesses today are much shorter than they were when I was in elementary school in the ’80s and, in some places, have been cut out altogether. Educational demands are higher and so things like recess and music are being squeezed out to meet those standards which means our kids are asked to sit still for far longer than is natural and healthy. And with the amount of classwork they bring home there isn’t time to play after school either.

5. Sickness My kids get sick more during the school year than any other time. There are two things which parents who defend sending their sick kids to school like to say that really makes my ass hurt:

“Don’t be a germaphobe! You can’t keep kids from getting sick, they’re all going to get it no matter what you do so why try?” and “If I kept my kids home every time they were sick they’d miss the whole year which is just unrealistic.” 

If this is you, rethink your stance on hand washing and contagion and stuff because you’re doing it wrong. How about I wipe a booger on every one of you awesome people for making my kids miss weeks of school and costing us hundreds in Doctor’s visits & prescriptions each year? Huh? And (And!) for compromising the child that has a suppressed immune system or weak heart who has to swim in that petry dish alongside your snotting, coughing, non-handwashing kid? I would gladly be the finger of justice if it weren’t completely gross to do so. Okay, stepping down off the soap box and moving on…

6. Fundraisers I’m a boxtop clipping FIEND and am more than happy to support the PTA but loathe having to hit up friends & family to shell out money for some cheap (expensive! $12 for wrapping paper? You must be trippin’) stuff that nobody needs just to raise money for I-don’t-know-what. Run-on sentences are my thing, okay? Also, I resent the school using my kids as little salespeople blatantly exploiting their cuteness to make a buck. Sure, for a good cause but still…

My list of complaints is multi-tiered and ultra whiny so I’ve summed it up for you.  No doubt you, The Reader, could add a few to this list or give me a good upbraiding for my crappy attitude. To each his own and all that. Yesterday I saw our girls off on their first day and it went well. They were both so excited to get to school- especially the Kindergartner. I took about 30 or 40 pictures to remember the day by and then followed the bus to school to get more pictures. I keep scrap books as momentos to remember their school years and therefore have to acknowledge that it isn’t all bad. In fact, I sometimes wonder if I’ll ever be the Mom who celebrates at the bus stop and chugs mimosas with the neighbor ladies out of sheer relief that the kids are finally back to school. Not quite there yet but I’m sure I will be. Someday?

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