Autism Land……Again

It’s been a jam-packed Autism Fiesta lately…and not on purpose as part of our observance of National Autism Awareness Month.

Kiddo’s migraines have been sunlight triggered the last few mornings and after his meds are on board, he’s fine the rest of the day…..but it sets the tone.  He’s more OCD-y. He’s sneakier.  And he absolutely looks for his opening and takes it.

I have had a busier than usual few weeks…so of course, that’s when the Autism-Fairy visits us  at her most intensive.  I’m stressed. I’m vulnerable.  I’m tired and weepy.  Not good if I’m trying to give the appearance of *normal*.

Because the next few days were to be take-out and leftovers, I thought I would make one of the family’s favorite meals on Friday.  It’s a chicken in wine dish I learned from my mother-in-law and it’s a winner.  Only problem is it has to be made the day before so the chicken can marinate in the wine.  I browned the chicken, put it in a white casserole pan, poured the wine and the rest of the seasonings over it all and put aluminum foil over. Then I put it in my kitchen refrigerator. I thought Kiddo would not be able to see through the pan or the foil so, silly me, he would not figure out what it was.

Kiddo was home but the rest of the boys were not…..I made sure to put the pan in the frig when he wasn’t in the kitchen.  And then went upstairs to fold my underwear and get out clothes for myself for each of five events taking place this weekend….I’ve learned to do this so I have what I need even if I have to deal with something and forget.

I came downstairs and The Middle Boy was in the family room, sitting next to Kiddo…who was chewing something.  I asked TMB if he know what he was eating…he didn’t…..and I smelled Kiddo’s breath….chicken in wine……RAW chicken in wine!  I sobbed and took the pan and hefted it to the frig in the garage…..I should have done that to begin with but the pan is heavy and the wine sloshes….if one of the other boys had been home, I would have asked them to do it for me BUT I didn’t want to lift it, didn’t want to slosh it and didn’t think Kiddo could be that DAMN SMART to figure it out…..if he smelled garlic and olive oil, there was probably Grandma’s Chicken in Wine someplace. I felt like a failure because I didn’t think of all the contingencies. And I was worried he would have some sort of salmonella-type GI reaction.

I had lunch with one of my Autism Mom friends, Gigi (not her name), yesterday….this was one of my events (not really an event, but it is to us since it takes months of planning to figure out when & where!).  She reminded me we old time Autism Moms carry this guilt around with us from the days we had home visits and everything we did as far as parenting was concerned was questioned.  I had to agree…..a part of me worried someone would call me out for taking the easy way by putting that marinating raw chicken in the kitchen frig.  But how can we think of everything ALL THE TIME?  ALL THE TIME? The answer is…we can’t…we are only human. I know I’m human but think of myself as Super Autism Mom….I am, but sometimes, I’m not.

Everything is back to normal here.  I am on my way out to the final event of the weekend in about an hour.  And Kiddo?  Suffered no ill effects from his raw chicken partaking.  He is fine. HE IS FINE!

Every month is Autism Awareness Month at our house!

 

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Listen Up, Teachers!

I’ve mentioned I am a *retired* local ASA (Autism Society of America) Chapter Prez..  I still get autism calls because my phone number is out there on some forgotten website in the cyber-sphere, collecting cyber-dust I would imagine. I spent an hour and half today with one such Autism Call from a Young Autism Mommy and I have to tell you….I am livid.

I really thought with autism in the news and much more *popular*,  all these antiquated and tired views and reasons for autism would be retired.  I really thought the treatment I received thirty-plus years ago because I *caused* my son’s disability would not be happening to the Young Autism Mothers (my daughters-in-autism) of today.  I really thought folks (especially educators) knew about some of the challenges of parenting a young child with autism, such as  lack of sleep, the screaming, the feces smearing, the temper tantrums from even slight changes in their lives, the food and feeding issues, the lack of fear of dangers, and the sheer exhaustion and guilt that goes with all of it…because, well, autism seems to be much more prevalent and trendy than Back in the Day. I was wrong. My Young Autism Mommy has been guilted so much, she is afraid her child will taken away from her by the school district.

Her Little Boy was diagnosed with autism a few months before his third birthday last year, weeks before the District’s Early Childhood Screening. She was able to get a last minute appointment for the screening and, armed with the appropriate papers from the diagnosing physician, off they went. She was told Little Boy was eligible for all services and was given the option of having him begin right then because they had space for him in an afternoon class. She was also told they would be doing a Case Study (For those of you not familiar; Case Studies are done every three years throughout a special education student’s school career and can include behavior, academic, speech, physical, occupational and social evaluations) during the summer no matter if he began the EC Program immediately or waited until the fall.

She and her spouse decided to wait until fall since Little Boy was in a Montessori Preschool in the afternoon with teachers who loved him and he loved them too.  Since the EC Program he would be in was only half-day, they reasoned that in the fall they could keep him in the Montessori program he loved for half the day and do the therapeutic Early Childhood Program the other half. As well, she was promised the Case Study could be done during the summer. As you can imagine, nothing went according to plan.

They tried to bully  her into enrolling him right away and when she refused (beginning a school program the last 6 weeks of school with a young child with autism….were they NUTZ?), they became belligerent.  They told her he would NOT be able to start school in the fall until the Case Study was finished and oops, they misspoke, couldn’t do it over the summer. They scheduled him for the morning program, as she requested so he could continue with his Montessori Pre-School. Then just before school began at the last minute, decided he would be in the afternoon program afterall.  The Montessori School didn’t have room for him in their morning program so Young Autism Mommy and Young Autism Daddy decided to try the EC program alone.  It took the District four weeks to do their initial Case Study (their home visit didn’t go well). Then, it was as if the District had never heard of autism when Little Boy had daily meltdowns, lost what speech he had, had to be put back in diapers, flapped his hands (loudly) when he was required to sit for any length of time and ate crayons behind his teacher’s back. He’s now improving, behavior-wise, but they have to get these things under control before real learning can begin.  Transitions are hell for children with autism and you would think the school district would have a plan for children such as Little Boy. Apparently, not. And the District is blaming his family environment for the regression.

I am going to Young Autism Mommy’s first spring IEP meeting with her.  I haven’t gone to an IEP meeting since Kiddo aged out but I feel so outraged by her treatment, I am going.  Don’t think me gullible; I am meeting her and Little Boy at our local McDonald’s Playland next week, a week before the IEP meeting, to meet her and her child to see if this is the real deal.  My instincts tell me it is.

We’ll decide what she wants when we meet at McDonald’s and what Little Boy really needs.  If I do end up going to the meeting, I will explain it’s Young Autism Mommy’s show, not mine. I will be there for moral support and to *translate* from education-ese to regular English anything she doesn’t understand.  Young Autism Mommy is going to need to step up and not be emotional……in a way, the District is manipulating her by frightening her by their vague threats.  If she’s frightened, she is less likely to push for what Little Boy needs and is entitled to. And if Little Boy doesn’t get all the services he’s entitled to, it’s less money for the District.  (A quick IEP tip from Your Autism Cuppa here–it’s all about money so you should follow the money!)

I’ll try to write about what happens at McDonald’s next week.  The more things change, the more they stay the same!

Every month is Autism Awareness Month at our house!

 

Hello, Is this the party to whom I am speaking?

It’s been busy around here. The usual holiday stuff on steroids since I have a profession which is busy, very busy, around this time naturally.

Kiddo is excited once we put up Christmas wreaths, so he’s giggling and happyhappyhappy which is never a bad thing.  We always wait to put up our tree until a few days before Christmas simply to keep Kiddo from *arranging* ornaments the livelong day but do  other festooning in December.

Anyway, I’m really writing to complain today about Medicaid.  Mostly, Kiddo is very healthy other than his food triggered migraines…..no meds (except pain meds if he has the occasional  migraine triggered by light or he sneaks a food he shouldn’t have) and has a yearly flu shot from the pharmacy we’ve been taking him to for ten or so years.  His Medicaid primary care doc changes at least once a year so we avoid going to whoever that is unless we absolutely have to because it gets tiring having to explain autism (yep!) over and over again.

Last week as I getting ready to leave for a business meeting, Medicaid called and wanted to speak with Kiddo. I explained he couldn’t speak with them because he is non-verbal and I was his co-guardian and it should be in his file since we have faxed, emailed and written this fact with the corroborating papers  to them from the first time he applied for Medicaid.  She asked me what I meant by NON-VERBAL and she didn’t have his file in front of her.  I told her that means he can’t talk and it should be in his file and if she really needed to speak with someone about Kiddo, she should look up his file.  She countered with “can’t talk or won’t talk”…..I explained he has autism and he is not able to speak. She countered with “has he ever had speak (yep, *speak therapy*) therapy?”…..I explained he began speech therapy at the age of 27 months.  Then she accused me of not letting her speak with Kiddo and hung up.  I figured someone else would call again if they really needed information but as I was putting on my coat, this person called again and left a message on the machine, wanting to speak with Kiddo and only Kiddo, explaining they want to do a health screening for diabetes.  There is nothing to point to diabetes for Kiddo…he’s about as healthy as healthy can be……anyway, I will wait for a call from someone with his file in front of them.  I hate being treated this way since it takes away from what the focus should be and that’s My Kiddo!

And this, Kids, is one of the frustrating parts of parenting an adult with autism!