Thursday, December 19, 2013

If She Could Just Stay Little!

If she could just stay little

“One for the kiddie Corral,”  I said to the lady behind the counter. 

Who is it for?”  She asked. 

“My daughter,” I answered pointing to Naomi.

“I think she’s too big,” She said

I felt a jolt of panic “She is?”

“You have to be shorter than that pole over there,” She said pointing

I shuffled Naomi over to the pole.  She wouldn’t say still so it was hard to say for sure, but she was probably a tad taller than the pole.

“Can we please just do it this time?”  I said with pleading eyes.  “I won’t ask for it again.”

She shrugged, took my $4.00 and handed me a wristband.  “Just tell her to be very careful.”

This would be our last visit to Miller’s Dairy Farm.  It’s a place that Naomi likes to visit.  We buy ice cream, feed the goats, and get a pass for the Kiddie Corral, where they have a bounce house and recreational toys for kids.  Apparently Naomi was now too big.  Explaining why she doesn’t qualify for entry will not go over well.  It’ll be easier to simply stop going to Miller’s Farm.    

I see this happening more and more.  My daughter is cognitively set for toddler activities, but she’s not a toddler size.  She likes tiny little girls, but they are afraid of her because she is so much bigger.   There are no “mommy and me” open gyms for 7 year olds. She’s getting too big for story time at the library, the play area at the mall, the equipment at public parks and the kiddie area at amusement parks.     On top of it being hard for her to understand why this is, there is nothing with which to replace these events.  If she could just stay little, I could handle this better but she’s getting bigger.  We just start to get used to this autism thing and then those activities and places you’ve grown to love and count on aren’t options any more.  We’re just going to have to find a way to cope.

I know what someone out there is thinking.  “Just wait until she hits puberty!”  Yeah!  I know.  *Sigh*  For now, I’ll just mourn the passing of our visits to Miller Farm and hope we can find some alternatives.  That’s all I can handle today.

Monday, December 16, 2013

The Fear of Loss

Like most of us, there’s lots of things I’m afraid of losing, but the hustle and bustle of everyday life keeps me from thinking about them much.  What I’m talking about here is the loss that haunts me most of the time.

My most common fear is loss of Naomi’s junk!  And I really mean junk.  The broken zipper from her doll’s dress, the tiny nerd boxes from her Halloween loot, the gift key chains from the insurance company, the expired gift cards from a big box store.  In time, Naomi will also see them as junk, but during a critical period they are as precious to her as gold.  They are her obsession, her comfort, her stim, her grounding.  She will insist on taking them everywhere.   I am grateful for this junk at times.  When Naomi is wrapped up in it, it can help keep her occupied so I can put the groceries away, answer the phone or make a quick trip to the bathroom without her even noticing.  With the tiniest distraction, they’re lost.  Temporarily lost, but lost and that is the precedent for a tragedy.

“Trick or Treat! Trick or treat ,” she screams.  I’ve got 20 seconds to figure out what it is she is looking for and find it.  Yes, the purple and pink Nerds boxes that she likes to shake.  I think she called them ‘trick or treat’ yesterday.   I last saw them on the dining room table.  Damn! They’re not there.   Maybe she put them on the shelf when she went to pick up her dolls.  Strike two!  I am trying to pretend I’m calm on the outside.  “Now Naomi, take a deep breath.  It’s okay.  We’ll find them.  Can you help me look?   If you can’t calm down, I’m not going to look for them. “   I may as well say “Pick it up a notch and throw in some aggression while you’re at it,”  because that’s what she’s doing.  She hits and kicks the floor and the tears start “Trick or Treat! Trick or Treat!” She screams louder.  The adrenaline flows faster through my veins.   We’re getting to the point of no return.  Where are those frigging Nerds?!   I’ve tried sitting down and refusing to look until she calms down in situations like this before.  Let’s just say it doesn’t work.  It's kind of like telling some one  to take it easy when their clothes catch on fire.   “Steven!  I yell.  Do you know where those pink and purple Nerds boxes are? “ 

“I think I saw them on the dining room table,” He answers

Okay, if he saw them there too,  they can’t have gone far.  She starts kicking the floor, pulling at her hair “TRICK OR TREAT”

Yes!  I find them!  They are in her plastic Halloween pumpkin!  I hold them up for her to see.  As she reaches for them, I pull back.  First you stop crying!

“Stop crying.” She repeats

“Take 3 deep breaths. “  She takes those breaths quickly.

“What do you have to say?”

 “I’m sorry mommy”

What do you have to do?

“Calm down.”

We go through this dialogue every time.  It doesn’t stop her from panicking the next time something is lost.  I guess as her mother, I just feel like I have to try something and she knows what she needs to say.

So when she goes to bed I make sure I know where those Nerd boxes are.  Yikes!! After searching out every possibility, Steven sneaks into her room with a flashlight.  Yes, they are beside her bed.

I will sleep better now that I know where they are.  Tomorrow, I’ll buy backups so that I never have to worry about finding Nerd boxes again.  Inevitably, as soon as I’m secured with more Nerd boxes than anyone would ever need, Naomi will lose interest and they will be forgotten junk.

Saturday, December 14, 2013

When Free and Appropriate Isn't Enough

Every person in this country is entitled to a “Free and Appropriate” education. The understanding is that no one should be financially burdened by getting a basic education and therefore it must be free.  That education must also be appropriate for every child.  That sounds good until we consider that free and appropriate doesn’t have to be “effective” “practical’ or “efficient”.   In short, it doesn’t have to actually work for that child to make it in life; it just has to be free and appropriate.  When a special needs parent isn’t happy with the support or education his/her child is getting they often find they have few choices.  The cost of private school for special needs children can be prohibitively expensive and homeschooling can be especially hard when learning disabilities and behavior problems are an issue – (Kudos to those that do this.) The final option is to convince either the school or the legal system that the education the child is getting is not appropriate.  If a parent can do that, the system must pay for an alternative program that makes sure the child gets an appropriate education.  Break open the champagne!  As you may have already guessed, this doesn’t happen very often. 

We live in Ohio.  I believe it is neither the best nor the worst state for autism services.  We are surrounded by states that have an insurance mandate for autism, while our mandate hasn’t been implemented yet.  We have one thing however, that is unique to Ohio and for which I am extremely grateful: the Autism Scholarship. The autism scholarship allows parents to opt out of the public school system and direct $20,00.00 of their child’s education funds to a registered, alternative provider.  This could result with a home program or a school that caters to children with autism.  The most wonderful part of this is that the parent doesn’t have to fight for it.  Parents don’t have to convince anyone that the school is failing or that this is the best option for their kid.  You just get the paperwork, get it signed by the school administration, (it’s a little awkward but they can’t refuse you) make arrangements with the agency or school you choose to work with and it’s a done deal!

I read a lot from other autism parents on the blogosphere and there are some serious horror stories out there.  The worst are stories of abuse in which there is physical evidence of but still considered ‘unproven’, since the parents can’t prove who the perpetrator was.  (Yes, I know this is like saying a murder didn’t take place since all they could find was the dead body and not the gun with the finger prints, but it actually has happened.)  There are cases of bullying that the school refuses to take seriously since the kid can’t communicate well enough to describe exactly what is happening.   There are cases of verbal abuse, which the parents only find out after sending the kid to school with a wire.  Then there are the minor things - refusal to involve parents in decisions, communication reluctance, or using punishment, when the kid really needs accommodation.  Schools will usually not agree that they are not providing an appropriate educational environment; Proving it in court is expensive and has a very high burden of proof.   

We were unhappy with Naomi’s school for one main reason.  She was miserable and made it clear that going to school was a nightmare for her.  We didn’t know why and trying to find out left us in that communication stalemate.  “Sometimes they’re just like that,” we were told.  Issues, I brought up were dealt with lame excuses and out-and-out lies.  They were not huge lies that I could take to court, just inconsistencies and contradictions that were enough to make me distrust her teachers.   They were defensive and dismissive and our concerns were not being taken seriously.    If we were required to prove that the school was inappropriate for Naomi, we would never have met the burden of proof.  Yet we knew, the school was not meeting her needs.  Parents are good at stuff like that.   I am extremely grateful that we didn’t have to prove anything, we didn’t have to convince anyone and we were not left with choosing between homeschooling and paying a private school out of pocket.  We could go with the autism scholarship.   We found a provider that we are happy with.  Naomi has a shorter school day and there is a lot more driving for me, but when Naomi is well adjusted and I trust my concerns will be dealt with responsibly, it is worth it.   I only feel badly that every parent does not have this choice.  They should.  I encourage anyone outside of the state of Ohio to get their legislators looking into the possibility of an autism scholarship.   With such a diverse population, we need a diverse choice of education sources.  The money is to educate our children.  Parents know where it can be used most effectively!

Friday, December 13, 2013

Book Review: Our Wild Card by Sarah Hensley Montz

When Our Wild Card, Sarah Montz’ book about raising a child with autism, first came out, I thought “Maybe I’ll get to it later.”   A few years ago I would have bought it immediately and stayed up all night reading it.  That’s what I did with many autism mother’s stories.  When  Jenny McCarthy, Kim Stagliano, LeeAnn Whiffen and several others came out with their books, I immediately devoured them.  After so much reading,  I felt like I’d reached a saturation point.  I guess I thought that I’ve seen it/heard it/read it all.   When I got around to reading Our Wild Card, I realized that I was wrong.  Montz’ book has its own flavor, its own style and its own events.  It reminded me that I haven’t read it all and we can still all learn from each other.

 I would love to see this book become required reading for all people who work with autistic children and their families.  Administrators, therapists and teachers know how important parents are, but they haven’t lived the autism family life.  Montz’ book could help them get that perspective and put it to use.  The events reviewed in Our Wild Card made it clear  that autism doesn’t occur in a bubble.  When autism enters a family’s life, life still happens.  Financial issues, personal slights, family dynamics, caring for other children and the weighing of time, energy and money against the benefits to the child all get covered in this book. 

If you are an autism mom or a veteran, there’s a lot in Our Wild Card you will enjoy.  One of my favorite parts of the book was at the end when Sarah met up with another autism mom in the waiting room of a therapy center.  The two women seemed to have very little in common to the outside world, but they shared something huge.  They were both autism moms.   The woman in the waiting room was going through a very rough time with her daughter.  With Montz at her side, she let all of her frustrations and fears come out.    Another person likely would have judged this mom for speaking so candidly or even questioned the veracity of what she was saying.  But Montz is an autism mom and knew what the other woman was going through.   The understanding that they shared outweighed any of the differences between them.   It was a strong example of how much we can mean to each other through our sympathy and kindness.

 With each chapter I either got new insights or I thought “I know exactly what she is talking about!”  Sarah Montz clearly ‘gets it’.  It was like autism reality cloaked in comfort!  It doesn’t end with a miracle recovery or any profound meaning to life, but we see how Montz’ son, Travis brings his own gifts and love  to the family.  All mothers can (or should be able to) relate to that!    

Overall, I highly recommend it.  Whether a parent, a professional or a friend, anyone who has been touched by autism should find something honest and heartwarming in Our Wild Card.

Tuesday, December 10, 2013

I've Been Thrown Out of Better Places than THIS!

So I hit a new low.  I was thrown out of a Taco Bell.  Yes, I've been thrown out of better places.  It had nothing to do with Naomi nor autism. (Well, sort of, but only very indirectly.) I guess it serves me right for eating at Taco Bell.  Maybe I should have let this go, but I just couldn't.  The letter should speak for itself. 

Taco Bell

1 Glen Bell Way,

Irvine, CA 92618

Dear Taco Bell,

I had an unpleasant experience at the XXXX, Taco Bell tonight.   I thought you may be interested in what happened.

While my daughter was attending a special needs recreation event, I went to find a place to eat and pass some time until I had to pick her up.  I went to Taco Bell and got a soft chicken taco and a drink.  After I had eaten, (but had not yet finished my drink) I did what I often do in waiting rooms, fast food restaurants and other public areas when I have free time.  I made some nutritional supplements for my daughter.  You see, because of her condition, it has been recommended that she take several nutritional supplements.  Unfortunately, she cannot swallow large capsules, so I have to split them up and put them in smaller capsules.   This can be very time consuming so I carry around the necessary parts in my purse ready to assemble them when time opens up.

Soon after I started a staff member came and told me I couldn’t continue to do what I was doing.  I can’t remember exactly how she phrased it, but she conveyed that it would be disturbing to other customers.  I didn’t want to create a fuss, so I cleaned up after myself and left.  However, I don’t understand how silently assembling some small nutritional supplements was going to be upsetting to other customers.  There were plenty of seats and tables available, I had been there for less than a half hour, I didn’t make any kind of mess and I was bothering no one.   I have witnessed people spending extended periods of time talking on cell phones, working on laptop computers, reading newspapers or just hanging out with friends well after their meals were finished at Taco Bell and I have never seen those people told that their activity is inappropriate.  Many Taco Bell restaurants even have Wi-Fi available so evidently it’s acceptable to take part in surfing the web after you’re finished eating.   Why was assembling small nutritional supplements so unacceptable?

I have frequently done this at Chick-Fil-A and McDonald’s and I have never had a problem.  One time a McDoanld’s staff member asked me what I was doing and when I explained, we had a quick conversation about a special needs person in his family and he bid me a good day.    I guess I learned tonight where I am welcome and where I am not.  I will not be going to Taco Bell again and I am going to tell this story to anyone that will listen.



Saturday, December 7, 2013

Conference Call on the Link Between EMF and Autism

This is a very important topic, worthy of research and consideration now that everything is going wireless:
 Register for this Collaborative for Health and the Environment conference call Tuesday at 4pm EST with Martha Herbert, MD from Harvard Medical School and the Transcend Research Lab at Mass General (autism focus), and Cindy Sage, authors of the recent papers showing a potential EMF-Autism connection. This is important work that essentially shows that the physiological changes in autism and those from EMF are 'remarkably similar'. They suggest autism's behavioral and sensory processing difficulties may be SECONDARY effects from the physiological effects, and that removing EMF may halt the interference in natural repair processes from the EMF, creating the physiological and thus behavioral effects. There are over 800 genetic 'associations' with autism but never have they found a genetic mechanism of action. This new work is VERY IMPORTANT and deserves our close and continued attention. Join the call by Registering with Collaborative for Health and the Environment now at the link below.

Featured speakers:
Cindy Sage is an environmental consultant and public policy researcher specializing in EMF issues since 1982. She has provided professional consulting services to cities, counties,  states and a national EMF policy group on the issue of EMF policy and prudent avoidance. Ms. Sage has numerous publications and invited presentations in the areas of EMF public policy, public perception, land use planning and computer modeling of EMF, real property impacts from transmission lines, and remediation of high field environments.

Dr. Martha Herbert, MD, is an Assistant Professor of Neurology at Harvard Medical School, a Pediatric Neurologist at the Massachusetts General Hospital in Boston, and an affiliate of the Harvard-MIT-MGH Martinos Center for Biomedical Imaging, where she is director of the TRANSCEND Research Program (Treatment Research and Neuroscience Evaluation of Neurodevelopmental Disorders). Her main research interests are in addressing autism as a “dynamic encephalopathy” (something that can change) rather than a “static encephalopathy” (something that is fixed for life) and in how environmental vulnerability affects brain and body health and function.

The call will be moderated by Antoinette Stein, Coordinator, CHE EMF Working Group. Michael Lerner, President, Commonweal, will provide opening remarks.
The call will last one hour and will be recorded for archival purposes.

Wednesday, December 4, 2013

There Goes Another Friendship

We were at the playground.  I saw my friend Kim and her little girl Sofie.  Sofie is 7 year old like Naomi.  Naomi and Sofie had played together before.  In the past, I had told Kim that I appreciated Sofie’s kindness.  Not everyone is patient with Naomi.  Lately, I had seen Sofie’s kindness waning but I realized that this is likely to be the case as children get older.  They notice more of a difference between typical  and kids like Naomi and they keep more of a distance.  It’s sad, but a fact of life.   On this particular day, I saw a side of Sofie I hadn’t seen before.  She was deliberately being unkind. 

Sofie was playing with another little girl and Naomi was intentionally being left out.  Sofie and her friend were actively avoiding her.   They were ducking away when Naomi walked by so they couldn’t be seen.  They walked  to another spot every time Naomi went to join them.   Sofie wasn’t saying anything mean aloud, but there was a lot of whispering and pointing that was clearly about Naomi and clearly not nice.    Kim and I could see from 30 feet away that Naomi was unwelcome in their play.  “She’s only seven,” I told myself.  “She doesn’t understand.”

“Sofie’s not intentionally ignoring  Naomi,” my friend Kim said.  “She just has trouble playing with more than one person at a time.” 

This was the most ridiculous thing I had ever heard.   Sofie is the kind of kid that makes a friend in 30 seconds and is always in the middle of a group.    Of course, I couldn’t point this out.  “That’s okay.  We’re used to it.  Naomi has trouble keeping up socially, so it’s just the way it works out,”  I said.

I had mixed feelings about this interaction.  I guess it was nice that Kim recognized that Naomi was being left out, but I was bothered by the fact that she refused to acknowledge the obvious.  She knew her daughter was being unkind and she excused it.  Even some brief mention of talking to Sofie when they got home would have satisfied me.   Sofie is only 7 and she can’t be responsible for understanding something as complex as autism. But how should I feel about Kim?  I suppose Kim never stopped to think about what it feels like to watch her daughter from my angle, but it would be nice if she tried.

 The next week was Sofie’s birthday party.  I think Naomi had only been invited because they felt they had to reciprocate the invitation Sofie got for Naomi’s birthday a few months back.   It was going to be just be a bunch of kids at the mall’s play area and some cupcakes.  “For a gift, Sofie likes Rapunzel – ‘Tangled’ things and Dora,” Kim told me before I could even ask.   I bought a gift – a Rapunzel doll.  I will get the gift to her, but I made an excuse for us not to be at the party.    I imagined Naomi wouldn’t be missed and I wouldn’t miss seeing her left out.     

Kim is also pregnant.  I asked if she’d like me to get her some baby clothes or a box of diapers the day that I saw her and Sofie at the park.  “What I really need is formulae.  I’ll be using Similac. ”  Kim said.   I agreed to get her some and a few days later I got a phone call.  It was Kim.  “ I was wondering when you could drop off that formulae.  I have the C-section scheduled for the 9th so if you could drop it off in the next couple of days, that would be great.”  - Alrightie then!  I’ll drop it off with the Rapunzel doll.   I wish that I could give for these occasions from the heart, but it’s just not a feeling I can muster.   I will simply give quickly and bow out graciously.  I will avoid Kim and Sofie in the future.  Maybe I’m too sensitive.   Maybe I should be more understanding. Maybe I should try to work things out.  However, I just don’t feel I can dispense with the emotional energy these days.  Bye Kim; Bye Sofie. I wish you both well.