She Did It!

Congratulations to Zoe on her graduation from speech and occupational therapy. When she first started therapy Zoe was unable to speak, made little to no eye contact, and had significant delays in her fine and gross motor skills. Eight years later my girl can talk up a storm, rides her bike, performs with a song and dance group, takes piano lessons, and is more present than she ever has been. Sure there are challenges; Zoe has her difficult days–but they are far outweighed by the good, great, and just plain wonderful ones.

This is her first post-therapy week, and Zoe’s concerned about the fact that something that has been part of her routine for eight years is no longer there. She even asked for new goals, since the ones set by Miss Amy and Miss Lisa (her therapists) have already been met. That’s our girl for you. To commemorate the beginning of a new chapter in her life we threw a party for her this weekend, and what’s a party without cake?

Moving On

Change isn’t something that Zoe–or just about any other autistic child–takes to very easily. When she was in kindergarten, changing what she ate for lunch on a given day was met with a resistance not seen since the French Revolution. And you could forget about last minute schedule changes; oh, the wrath that would ensue! As Zoe’s gotten older, her ability to transition has improved dramatically. She still puts up a fight sometimes, but in general she has a much easier time of it.

Today Zoe got some news that, while very exciting, threw her for a bit of a loop. Her occupational therapist told us that it may be time for Zoe to “graduate” from therapy. She’s met all the goals the therapist had set for her, and she has improved in that area to the point where therapy may no longer be needed. I had a similar conversation with her speech therapist not long ago; so it appears that after the present evaluation period ends, Zoe may be done with private speech and O.T. after nearly 8 years. That’s right folks; she has been in therapy for 8 of her 10 years. So you can see why Zoe might be a bit apprehensive about closing that chapter in her life.

Zoe loves the therapists, staff, and friends that she’s met along the way; and I know that’s the reason she doesn’t want to leave. So part of what we’ll be doing during her Thanksgiving break is talking about how we deal with moving on when things in our lives change. It’s fascinating to see how she handles this; Zoe has reached a level of maturity that I guess I didn’t really notice until now. That’s the mama in me, always seeing my baby as, well…a baby. But today my baby came home from therapy, and sat at the desk and proceeded to write in her journal, no doubt about the changes in store for her now.

Jenny

Today I’m off to the bookstore to pick up a copy of Jenny McCarthy’s new book, Louder than Words: A Mother’s Journey in Healing Autism. Jenny’s been promoting her book on various talk shows, getting out the message that help is out there for families affected by ASD. Among other things, Jenny writes about her experiences with the GFCF Diet–and I’m always interested in hearing about other families’ experiences with the diet.

I’m a bit behind in picking up this book–I meant to do it last week. So to say that I’m chomping at the bit to get this book in my hot little hands would be an understatement. Lately I’ve been up to my eyeballs in homework (I’m drowning in logic problems and chemical formulas over here!) and rehearsals. A chance to sit and read a book of my choosing will be such a treat. Flamenco Dad and I have 2 shows this week, and after that I’ll be able to give Jenny’s book my attention.

The Special Mother

I received this via e-mail yesterday from a friend whose child was just diagnosed with Autism. I had read this essay once before, and I think other moms of special needs kids may have seen it before, but it’s certainly worth sharing with all of you. If you have a friend with a special needs child, you may want to pass it along.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

“Rutledge, Carrie; twins. Patron saint, Matthew.”

Finally He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.”

The angel gasps – “selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ’spoken word’”. She will never consider a “step” ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

“And what about her Patron saint?” asks the angel, his pen poised in mid-air.

God smiles, “A mirror will suffice.”

Meltdowns

When Zoe has a rough time, she is prone to having meltdowns. They don’t happen as often as they used to–the gluten free/casein free diet has a lot to do with her success–but they are still tough to handle sometimes. When Zoe was a toddler her meltdowns would be comprised of hours of uncontrollable crying and screaming, and a heightened sense of urgency about the fact that everything needed to be just so. Now that she is older and more verbal, the crying and screaming have been greatly reduced; but oh man, she gets very rigid about things when she’s having a meltdown.

The past two days have been a challenge. I think part of it is because Zoe’s been off her typical schedule due to spring break. She’s obsessing (rather loudly) over things that typically wouldn’t get much attention from her; she’s chewing on her clothing again; and she’s doing a lot of “stimming.”

Stimming, for those who have not been introduced to the term, is a common behavior of autistics. It’s a self-stimulation behavior, and different kids have different stims. For many, it included things like hand-flapping and rocking in place. Zoe’s stim includes rocking back and forth while squeezing her left hand and wrist with her right hand. If left unchecked, Zoe can do this for HOURS.

Truth be told, if her stim wasn’t harmful to her body I wouldn’t mind it so much. Parents of other autistic kids I’ve spoken to all say that their kids find comfort in it, since it helps them deal with their sensory integration issues. However, Zoe has caused damage to her left wrist and hand due to the stimming–even with us stopping to remind her to stop when we see the behavior. Ayden even tells Zoe to stop stimming if he sees her doing it.

These behaviors appear periodically, and the worst of it never lasts for long. That’s something that I always keep in mind while we’re going through it; that certainly helps me keep my cool (somewhat). Zoe is a child that’s going through a transitional period, so I’m trying my best to remain calm and keep a positive outlook. Her classroom situation is gradually changing; and hey, she’s growing up. Moving from childhood to early adolescence is tough on many kids. It’s different for her because she has other social issues to work on, so it’s tough for her to process these changes sometimes. Sometimes it’s hard for parents too.

I Heart Toys-R-Us

We went to Toys-R-Us today so that Ayden could pick out more Thomas trains (good Lord, how many are there anyway?) and Miss Zoe could get some new Leapster software. As we walked up to the building we saw a humongous sign. From a distance it looked like it said “Autism” but I wasn’t positive. Sure enough, it did say autism. Toys-R-Us is now the national sponsor for Autism Speaks International. Autism Speaks and Cure Autism Now recently merged to become the largest foundation for autism research.

The world’s biggest toy store is accepting donations and is sponsoring nationwide fundraising walks. The Flamenco Family completed a 5k for Cure Autism Now a year ago, and we’re planning to do it again this year. For information on walks and other fundraising events in your area, visit Autism Speaks at www.autismspeaks.org.

Presenting a Different Point of View

I stumbled upon an interesting essay while surfing for sites about autism. It was written by a man named Frank Klein; he is a high-functioning autistic man in his mid-30s. Klein’s argument is that finding a cure for autism would eliminate what makes him him. Klein says that he is on board with finding cures for the painful aspects of autism; but that since being autistic is so closely tied into a person’s identity, that curing the disorder is equal to destroying the person. Certainly a different perspective on curing the disorder. Anyway, I found it fascinating; I read some of his other essays and found them all to be interesting reads. Here is the link:
http://home.att.net/~ascaris1/dontcure.html.

Why I Do What I Do

In the four years since I started cooking gluten and casein free, family members, friends and people I’ve met along the way have had tons of questions. “Why do you do it? How can you not feed your kids stuff like bread, cheese, and ice cream? Man, I couldn’t live without that stuff!” is usually how those conversations start. Truth is, cooking without gluten or casein is a challenge—especially at first. Learning to tweak favorite recipes takes time. And believe me, it takes a lot of patience, time at the health food store, and many hours at the library and online. For me and my family, the extra work does not outweigh the benefits of this way of eating.

I started researching the GFCF (gluten-free/casein-free) diet as an intervention for the treatment of autism after my daughter was diagnosed. I began to look for any information I could find on the subject, and started finding ways to modify recipes for foods I already made that would be suitable for the whole family. For the sake of simplicity (as well as my sanity), most nights dinner is gluten and casein free for everyone. I do make both traditional as well as GFCF breads and cakes for us; and truthfully, I do stock cheese in my house (I love me some yummy feta and Gouda). But I keep plenty of GFCF cheese on hand for things like grilled cheese sandwiches and pizza that my family enjoys.

I hope that readers of this blog will find valuable information. What I am really aiming for is to demonstrate that cooking and eating this way does not have to be a total downer. There are many dishes out there—even cakes and cookies and bread– that can be made that still adhere to the GFCF diet. I’ll be posting recipes and photos of the foods I prepare; I’ll include the results of home taste tests (my husband and kids are very willing participants); and along the way, I’ll post links to websites and articles of interest about living the GFCF lifestyle.