Young Autism Mommy Update

A week or so ago, I wrote about a Young Autism Mommy who called me by mistake.  I met her and her ADORABLE Little Boy last Monday at the local McDonald’s playland. Her Little Boy was a very *busy*, very *active* very *typical* of many an almost-four-year-old. And yes, I could tell he had autism just by looking at him. No real eye contact. No real communication other than taking his Mommy’s hand to show her what he wanted.  Some communication is better than none but it still is very stereo-typical of many people with autism.

All Young Autism Mommy wants is to feel respected at her IEP meeting and wants to know what to expect. She feels she was blind-sided a bit when, after the Case Study was finished, she had her first IEP meeting. When she was told she had to sign it before anything could be implemented (not true….you can initial the items you approve of and not initial things in dispute and then sign the new, REVISED document after the revisions. An IEP can be revised at any time during the school year as long as BOTH the school and parents agree to the revisions), she signed against her better judgement.

Her IEP Meeting is the week after Mother’s Day. We’ll go out for coffee the week before so we can go through what needs to happen this time. I’ll suggest to her speech therapy and OT total minutes per week for a half day program.  I’ll also strongly suggest the district hire an autism consultant to help get the most out of what is available in the district.  And since I know *where the bodies are buried* in her district, so to speak, I can honestly say this district has hired an autism consultant in the past–ten years ago, to be exact–because I am the one they called for referrals. School Districts just love precedent!  Ho-boy, this is gonna be fun!

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!

 

Childhood

I can see that day–that perfect day–as if it happened last week or last month.  That perfect day in my boys’ childhood.  That normal, perfectly ordinary day.

It was a Monday in late October.  One of those days that is bright and warm during the day and cold and crisp as it begins to get dark.  It was like so many Mondays at that time in our lives; busy.

I was in graduate school and arranged to have early days on Mondays most semesters.  Our Kiddo had swimming class and The Middle Boy and The Youngest had piano lessons on Monday afternoons.  Rather than have their sitter take them to their activities, I wanted to take them as much as I could.

This particular Monday, my friend, who also had an autistic son in the swimming class, arranged to take Kiddo with her son.  I would pick them up and take them home.  I dropped The Middle Boy and The Youngest at their piano teacher’s home and went back to our house to get things ready for dinner.

I had baked chocolate chip cookies the night before and made ice cream sandwiches with the cookies and put them in the freezer.  I set the table and folded napkins.  There was homemade ice tea in the frig and all that was left to do was put the chicken and potatoes in the oven so that we would have only thirty minutes to wait when we got home.  I punctured the potatoes and sprinkled some salt, pepper and paprika on the chicken.  The salad could wait until we got home.  A very simple meal but one I knew my family–and all three boys–would eat.

Looking at my watch, it was time to pick up The Middle Boy and The Youngest and grabbed my purse and got in the car.  I never listened to the radio when driving with my kids–I wanted to hear what they were saying and pay attention to them!  I pulled in front of their teacher’s house and the boys tumbled out, and she waved to me.  They were happy–good lessons for both–and had had a chance to play with her daughter’s Game Boy.  They enjoyed the Game Boy part of waiting for their lessons; since I was such a mean mother I wouldn’t allow them to have one.  Each was arguing about some point of one of the games and the bickering and teasing continued down the street as we headed to the Special Rec Swimming Center, where Kiddo had his swimming class.

It was near dusk, and rush hour.  Traffic seemed to crawl.  Nevertheless, we were five minutes early picking up the boys.  I always parked very close to the entrance of the swimming pool and in that cool, crisp air we could feel and smell the warmth and chlorine–the air was heavy with it.  I looked out of the car window and could see the lights begin to come on outside of the building.  I could see the children–the children with autism–begin to leave the pool area and go to the dressing rooms.  It would be a few minutes before The Kiddo and Joshie would be ready–I could see their aide lead them to the changing area.

I ran in and led Kiddo and Joshie by the hands to my car with all of their swimming stuff as well.  I put the boys in the car and opened the trunk to put their bags in.  It was then it hit me–what I was doing, picking up kids and carpooling–was something very normal, something people with Neuro-Typical children take for granted.  I wouldn’t get to do a lot of this in my life with Our Kiddo and I should savor it while I could.

I can still smell the cool, crisp air, the chlorine, see the petrified French fries on the floor of the backseat of my car and hear The Middle Boy and The Youngest bickering about their video game.  I can see Frannie’s face when I dropped off Joshie with his soggy gym bag.  I can remember Hubby complimenting me on the ice cream sandwiches and asking me if there was anything new.  I remember my answer as well–not anything new, honey, not a blessed thing.

Every month is Autism Awareness Month at our house!