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!

 

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!

 

Ladies Who Lunch

In Loving Memory of JeriLynn

To the casual observer that afternoon, we were just another table of ladies of a certain age catching up.  Possibly old friends from PTA or Little League or Band Moms or any of a number of activities our kids could have participated in together in their school days.  Caryn* and I were the first to arrive, both of us being close to the chic-chic place Jeri had chosen for lunch.  Judy ran in, thinking she was late, with Jeri right behind, and Frannie was late because Frannie was always late.

We hadn’t seen each other for a few years and had much to talk about.  If you had been eavesdropping at this point; you would have had your first opinions confirmed.  Our jobs and our husbands—or ex-husbands—and our kids were topics of conversation as well as what to order for lunch. Salads with dressing on the side, coffee or iced tea and possibly blowing the Weight Watchers points with a real entrée were the topics we began with that afternoon. We are typical of ladies of our age in many ways and our conversation showed it.  We were loud; we were silly, we were happy to be together after years being apart.

The five of us are interesting gals—we always were.  One was a postmaster, another head librarian for a town, one taught foreign languages and another taught children with learning disabilities.  I was the music/arts educator of the group. All of us worked at least part time while our kids were growing up and had some help—or no help—from our kids’ fathers.  Our hubbies were scientists and physicians and English teachers and construction workers.  The ex-husband wasn’t worth mentioning but the grandparents who helped out were! Caryn had one child but the rest of us had two or three—all boys.  And we each had one son who had autism, all very close in age.

Jeri and Frannie started our autism support group in 1986 when there was none–and I mean NONE—in the area.  Breaking new ground, they started something from nothing at a time when autism was a rarely mentioned and certainly did not seem to be as prevalent as it is now.  They met each other at the early intervention/pre-school program their sons, Joshie* and Pete, attended together. They had a need to compare school districts and treatments as well as have some sort of support system. And it was great to talk to someone who really understood the rather bizarre world of autism!  It was a good idea and the little support group soon became part of our state’s society.  Judy and Caryn had been early board members.  I joined the group a few years later, became a board member a few years after that and president a few years after that.

Unlike days past, we didn’t have an agenda for this lunch.  I remember a lunch we had on a Saturday afternoon which took an Act of Congress to pull off and schedule.  During those times, there were coffee meetings and phone meetings and meetings before and after our meetings.  We planned conference topics and fund raisers and talked about our state society’s politics. We plotted who could go to the national meeting or the state meeting or if it made sense to take our families that year and get rooms near the pool.  Some years we did and some years we didn’t but we talked about it! We could never just enjoy each other and relax.

It was Jeri’s idea to get together this time.  She was determined we see each other. We tried before, during the school year, and decided with several of us teaching or working with kids, it was a lost cause.  That was why we were together on a beautiful summer afternoon, having lunch and catching up. It was nice, very nice, to catch up because, just as happened when our sons were younger, we had many things to talk about no one else could understand.

Those of us with other sons spoke of them.  Several boys were still resentful of their brothers needs despite the Sib Shops we so careful researched and took them to.  Most had their own lives, occasionally coming home from college, being swept up in the autism world when they did. These are good kids we’re proud of and not perfect by any means, but they’re good people.  We took joy in all of them and their achievements that day, knowing we all had some part with our Sib Shops and family Christmas parties and pool parties.  We tried to give all of them as “normal” a childhood as possible with friends who could understand and it was wonderful to hear what they were up to.

Then the conversation took a funny turn.  Despite not seeing each other for years, all of us picked up right where we left off in conversations, interests and sharing aspirations for our sons with autism.  It was so supportive, so welcoming, and so comfortable to be able to just be me and not worry about explaining every blessed thing and being with people who could understand.  A peace came over me, like no time had passed. It was as if it were the old days, when the kids were in school and anything was possible. There was such a sense of friendship, of comradely, acceptance and understanding at lunch that day. I wish I could have saved the feeling somehow to bring out when I needed it.

We started to reminisce once our food came about all the treatments we tried with our kids, the crazy ones as well as the more conventional ones.  Vitamins and behavior techniques seemed to help some as did vestibular stimulation and reading programs.  Diets worked to a small extent but not as well as you would think.  We laughed about one “theory” which was very popular during our sons’ elementary school years and the amount of money it would have taken to do it…..and was disproved soon after.  One or two of us confessed to trying something but not telling the rest because we were embarrassed—rose colored glasses—and we laughed and laughed.  No one else could understand why someone would try something like that, but we did.

Soon it was time to leave and we vowed to do Lunch again.  It is to my everlasting regret we did not because Jeri is no longer with us.  She is with us in spirit, I think.  Her sense of fun and silliness and stubbornness and love for her son Pete I will hold in my heart for the rest of my life.  I knew the rest of us will as well.

Every month is Autism Awareness Month at our house!

*All names slightly altered except for Jeri’s