Thursday, October 16, 2014

South Floridians: New Everyone's Included Special Needs Worship Service.



Have you ever felt that you were unable to attend church without people giving you "the look" because your child was stimming or moving about too much during the service?  We did not attend services for several years because The Prince was unable to endure the long service and was uncomfortable due to the loud organ music, bright lights and other sensory stimulation.  It was lonely.  I missed it.  Especially at holidays like Christmas and Easter, but all the time too.  I missed the support and the spiritual nourishment.  Many of my ASD parent friends have told me they feel the same way.

We were fortunate to finally find a spiritual home at Miami Lakes Congregational Church. This fall, the church has initiated a special inclusive worship service on the 4th Sunday of every month at 4 PM.  The service is held in fellowship hall, which is an open space allowing for movement and easily accessible.  The lights are dimmed, music is by soft guitar, visual supports are used.  The message is simple and presented in a variety of learning formats and the service lasts only 30 minutes.

For us, this is a safe place were families can worship together and everyone understands.

Come join us.  I promise you will leave feeling uplifted, loved, and happy!

Friday, October 19, 2012

Fireworks

I have been feeling more and more uncertain about the Prince’s future lately.  I think it is the reason I have not been blogging here very much.  I have always had a philosophy of hope.  And I still am hopeful, but we are on the brink of the teen years and the differences between the Prince and his peers are becoming more noticeable.  He is a little boy in a big boy’s body. 

Of course I know how fortunate we are that the Prince responded to all the therapies and is now able to speak and that for the most part, has ok adaptive skills.  At age 10 we are still working on certain elements of personal hygiene and tying shoes, but in the scheme of things, that is minor.  He’ll get it eventually, and if not, there is always Velcro.  He is toilet-trained, which I will always consider one of my greatest achievements. He still stims-- jumping, pacing, wringing his hands—and he has some verbal tics--but some people bite their nails  or have equally annoying habits.

I cry for my friends whose children are the same age as the Prince, but have not yet heard their child’s voice and I feel blessed.  I feel for my friends whose teenagers with autism are not toilet trained.  I really do know that the Prince is lucky and our lives are easier than those whose kids have more classical, Kanner’s autism; that is, if the Prince has to have autism at all, at least he has responded to treatment.  Although I am beginning to think he has plateaued and that scares me.

With “high-functionality” (I will always hate those terms, high and low functioning) comes a certain awareness of “being different” that has already led to OCD and depression in the Prince.  At various times when anxious he has pulled out his hair, or his eyelashes.  I see in my friends whose children are in high school and are high-functioning how prevalent anxiety and lack of self-esteem are.  My son is already on two medications for this.  What will happen when he gets older and his social world gets even more complicated?  Right now, his classmates who have known him since kindergarten are sweet to him, sort of protective, like they would treat a little brother or sister.  They love his echolalia, “Do Toy Story,” they say or “Do Cars,” and he does.  But what will happen in middle school next year?

The Prince has a terrible time maintaining focus on anything other than the lovely thoughts in his beautiful mind.  It seems to have worsened over the years.  He escapes into the safety of his inner world whenever he can. His eccentricities make him very likable, especially with adults.  Even his teachers, who have to work really hard to keep him on task, find his special interests to be charming.  But the ability to repeat facts from the NASA website will not get him his dream job working at the international space station—or even working at our local grocery, Publix, which employs many people with disabilities--unless he can master division, or sit still for more than 30 minutes, or maintain a two-way conversation.

Although the Prince has been fully-included with SPED support since kindergarten, we have always felt he needed a para.  But we were repeatedly told “he is too smart, he will become dependent, the other kids won’t like him.”  Fast forward to 3rd and 4th grade, and  his poor over-stretched teachers finally saw the need for a para too.  Now in 5th grade, after two years of jumping through bureaucratic hoops and the assistance of a professional advocate, the para is on the way.  The Prince will never be able to navigate changing classrooms next year without one.  I wonder if school would have been easier for him had we pushed earlier for a para and I feel guilty.
 
We are trying to help him become independent, but giving him supports too.  That is one reason we got Annie, his autism service dog.  She is a companion, a kid-magnet who forces him to be social with other children, and she is a helper for the Prince and for us.  Our current rounds of therapy involve teaching the Prince to control his internal impulses and his thoughts.  It is hard for him and for us.

My beautiful boy goes through life with intoxicating visions of supernovas and asteroids flashing in front of his eyes. I love him so much.  And I worry about him so much.  Will he ever be able to work, or live independently, or drive?  Will a girl ever fall in love with him?  It’s hard to know how to plan for his future with so much uncertainty.  As a cancer survivor (almost 4 years and counting!), I have learned to live with uncertainty for myself.  But accepting the uncertainty for my child is harder.
 
These have been my feelings for the last several months.  But today I watched a video of Katy Perry and a beautiful little girl on the spectrum, Jodi DiPiazza, perform Perry’s song, Firework.  It made me cry.  The words are so beautiful, “after a hurricane, comes a rainbow.”  Watching this touching performance made me realize I should not focus on the future, but on the present.  To enjoy those flashes of color that brighten the moments of darkness we may feel from time to time, and to realize that I can see the unique ways my son can light up the sky, if I only  look hard enough. 

 

 

 

 

 

Thursday, July 19, 2012

A Child is Waiting: 1963 Cassavetes Film about Educating Children with Special Needs


I recently watched a movie on Netflix called A Child is Waiting.  The movie was made in 1963 by Director, John Cassavetes and Producer, Stanley Kramer and provides an interesting view of the debates about the education of children with special needs at the time.  What was fascinating to me was how many of these same debates are still relevant today.
Burt Lancaster plays the director of the Crawthorne State Mental Hospital, a residential facility for children and young adults with special needs.  Lancaster’s character, Dr. Clark, has strict and rigid views about how the children should be taught, yet, he also fights valiantly against the state system’s representatives who want to cut his funding (sound familiar?).  Dr. Clark believes that emotionalism has no place in teaching children with special needs.  He is not harsh or mean, just intent on being consistent in his methods.

His foil is Judy Garland, who plays Jean Hanson, a Julliard graduate with an uncertain past, who applies to be a music teacher at the hospital.  Hanson disagrees with Clark’s methods and feels that emotion does have a place in teaching her students.  She becomes very attached to 12 year old Reuben, a boy who appears to have high-functioning autism (although diagnoses of the children in the film is never stated, and remembering this was the 1960’s before “people first” language, the word “retarded” is often used as a medical descriptor). 
Jean notices that every week on visiting day Reuben dresses up and waits for his mother to come. She never does.  Jean learns that his parents are divorced and that Dr. Clark feels that it would be better for Reuben if he did not see his parents.  Jean sends for the mother, to make her case, but the mother agrees with Dr. Clark.  As she leaves, Reuben sees her get into her car and chases her.  Later, he runs away (again, sound familiar?).  Dr. Clark is able to find him, and Jean offers to resign but Clark asks her to stay to complete the Thanksgiving pageant rehearsals and preparations.

Reuben’s father hears of the incident at decides to enroll Reuben in a private school.  When he arrives to pick him up, he attends the Thanksgiving rehearsal and is touched as his son recites a poem, with some help from the other students.  Reuben’s father decides his child is doing well and should stay at Crawthorne under Jean’s care.  The film began with Dr. Clark coaxing Reuben from his father’s car to go into the facility.  It ends with Jean assuming this role and coaxing a new student to enter Crawthorne.
To me, the stars of this film are the students, who with the exception of the actor who plays Reuben, are children with special needs from Pacific State Hospital in California.  The Thanksgiving pageant will touch the heart of any special needs parent who has watched their child participate in a holiday production.  The movie is worth watching, in my opinion, for that scene alone.
I did not care for the portrayal of Reuben’s mother as somewhat neurotic, “sensitive” and in need of Valium, although again, I have to remember this was the early 1960’s. The “refrigerator mother” theory was still in the air, no doubt. I did appreciate actor Stephen Hill’s performance as Reuben’s architect father, however, who is tortured and conflicted about his son’s condition and the toll on his marriage; another detail that sadly will ring true to so many parents whose children have autism today.

If you are a Cassavetes fan, as I am, this movie will surprise you.  It is not, in my opinion, representative of his work.  Nevertheless, it is fascinating.  Apparently Cassavetes and Kramer fought over the interpretation of the film.  Cassavetes said “"The difference in the two versions is that Stanley's picture said that retarded children belong in institutions and the picture I shot said retarded children are better in their own way than supposedly healthy adults. The philosophy of his film was that retarded children are separate and alone and therefore should be in institutions with others of their kind. My film said that retarded children could be anywhere, any time, and that the problem is that we're a bunch of dopes, that it's our problem more than the kids'. The point of the original picture that we made was that there was no fault, that there was nothing wrong with these children except that their mentality was lower." (From Cassavetes on Cassavetes, Ray Carney, editor).

This film shows the conflict between Kramer and Cassavetes, as it alternates between both perspectives.  Although the movie is not the one that Cassavetes was hoping to make, the conflict between him and Kramer is the same one prevalent in society at the time and seeing those two perspectives presented is revealing.  I think the film is actually more powerful to have both opinions represented.  I wonder how special needs parents viewed this movie when it was originally released?
As an autism parent living in the 21st century, however, all you have to do is look in the faces of the beautiful children in the film, all of whom have special needs, to see that Cassavetes, not Kramer, was right. 

Tuesday, July 17, 2012

One Hope Wine Online Donates To Underprivileged Families Fighting Autism






I am convinced there is an unwritten law that the best therapy for your child must be located at least 30 minutes away from your home.   This summer, I have memorized all the exit names on I-75 between my home and The Prince's therapeutic summer camp.  It is an hour drive round trip, twice a day. 

At this time of year in South Florida, inevitibly there are thunderstorms, usually in the afternoon right about the time I set out to pick-up my son.  This adds an extra element of fun to the daily I-75 trip.
I don't know about you, but after a long day schlepping my son to therapy, working part-time, shopping and preparing GFCF meals,  trying to stay healthy, and keep everyone in the household happy, I sometimes imbibe in a glass of a robust Cabernet.
Now, you can enjoy your wine and help other families struggling with autism.  One Hope Wine Online donates 50% of the profits from each bottle of their Cabernet to grants for underprivileged families struggling with autism. 

We are fortunate to have been able to pay for our son's therapies with the help of our families and to have some of his treatment covered by health insurance.  Nevertheless, it has cost a small fortune to get the Prince to the happy place where he is now.  I cannot imagine what it is like for families whose bread winner may have been laid off, or who might be facing foreclosure.  Change is difficult for our kiddos under normal circumstances, but when a family is in crisis, it is must be heartbreaking.

I am delighted that One Hope Wines Online has included financial help for the families of children with autism who truly need help.  We already have enough organizations funding research, but what many families need even more is immediate financial help.

One Hope Wines Online also donates profits from other wines to charities for breast cancer (which you know is a cause near and dear to me), Aids, Support Our Troops and others.
You can go here to check out their Cabernet Sauvignon and other wonderful wines.

If you click here, you can see the infographic on the left in greater detail and read all about the health benefits of drinking red wine.

Cheers!


Photo credit:
Presented By ONEHOPE Wine Online Fifty Percent of Profits Go To Charity

Sunday, July 1, 2012

Bob's Red Mill Prize Pack Give-away

Earlier this year, I shared the news with you that Bob's Red Mill had partnered with Autism Speaks to create Bob's Red Mill Birthday ClubWhen you register your child for the club, Autism Speaks will receive the small registration fee as a donation, and your child will receive a birthday kit which includes gluten-free vanilla cake mix, a puzzle, an apron, and a measuring cup.

Now, in order to sweeten the deal, Bob's Red Mill has agreed to send a prize pack full of additional gluten-free goodies to the first 10 people who sign up for the birthday club and leave a comment here, letting me know you have joined the club.  I will contact you if you are among the first 10 to leave a comment and get your mailing address so that Bob's can send you your gift.

Go here to register.  Ready, set, go!


Monday, May 21, 2012

Review: Betty Crocker Gluten-Free Cooking


When I was offered the opportunity to review this cookbook, I jumped at the chance.  General Mills and Betty Crocker were some of the first mainstream grocery providers to initiate gluten-free lines. They seem to have a commitment to making gluten-free products affordable and widely available. I have enjoyed their gluten-free website, Live Gluten Freely, which includes recipes, product information, online shopping, and gluten-free blogs.  I was hoping that this cookbook might include some of the recipes on the website.  It does, and much more.

Betty Crocker Gluten-Free Cooking offers recipes for what I would consider basic comfort food.  Recipes are coded “easy,” “quick,” and “low fat.”  It would be a good book for someone who is a novice cook or new to the gluten-free diet. The photographs are gorgeous!  Most of the recipes are very-kid-friendly.  Those that do include dairy are easy to adapt for our dairy-free kiddos.

I was particularly impressed that Betty Crocker contracted with Silvana Nardone, author of Cooking for Isaiah: Gluten-Free & Dairy-Free Recipes for Easy and Delicious Meals who wrote the forward and Jean Duane, author of Bake Deliciously! Gluten andDairy Free Cookbook.   Both of these great GFCF cooks submitted recipes for the book.

The introduction to Betty Crocker Gluten-Free Cooking offers an overview of the basics of gluten-free cooking and Celiac Disease. I was amazed at the amount of information packed into a few pages and written in an easy to understand style.  Topics covered include nutritional considerations for those on the gluten-free diet, sources of gluten, tips for working with GF ingredients, tips on dining out, and how to read labels.

Although some of the recipes call for Betty Crocker Gluten-Free mixes, many do not.  Several use Silvana Nardone’s Gluten-Free All Purpose Flour Blend, or Juan Duane’s Gluten-Free Quick Bread Mix (recipes for both are included).

The appetizers are delightful, easy, little bites; such as Basil and Roasted Red Pepper Bites, Greek Salad Kabobs, and Bacon-Wrapped Figs.  There are a couple of recipes using Rice Chex, such as Italian Chex Mix and Chili and Garlic Snack Mix. Ginger-Rice Crunch was the favorite at our house, which includes banana chips, almonds, peanuts, dried cranberries and coconut.  Several of the appetizer recipes call for cheese, but you could substitute casein-free cheese in most cases, or just leave the cheese out.

The breakfast section features Silvana Nardone’s Hazelnut Streusel Coffee Cake recipe, several variations of "bacon and egg” recipes (frittatas, quiches, scrambles).  The main course selections include many kid-favorites, such as pizzas, meat loaf, and chicken pot pie. The Prince loved “Ultimate Chicken Fingers” which uses GF Bisquick (the recipe calls for parmesan cheese, but I omitted it and replaced the butter with Earth Balance buttery spread).  For more adult tastes, the Champagne Shrimp Risotto and Chickpea and Tomato Curry were easy and delicious.  I also was happy to see a simple recipe for Cranberry-Orange Stuffing which uses cornbread and a gravy recipe.

The bread and dessert chapters, in my opinion, are the best in the book.  Duane and Silvana’s expertise shines here.  Duane’s quick bread mix is the basis for several yummy recipes, such as Cinnamon Raisin Bread, Applesauce Quick Bread, and Gingerbread-molasses Flax Muffins.  All of Duane and Silvana’s recipes are GFCF, so you do not need to worry about converting ingredients.  There are two scone recipes and even one for doughnut holes!  Banana bread, sandwich bread, pretzels, there is a recipe for any kind of bread, muffin, or roll that you can imagine!

The dessert section is decadent!  Duane’s Chocolate Snack Cake with Creamy Butterscotch Frosting is a knockout.  The Chocolate Chip Cookie Cheesecake is super easy and delicious (I used Tofutti Better Than Cream Cheese in place of the Cream Cheese). Nardone’s Blueberry Pie with Cornmeal Crust looks fabulous, though I have not tried it yet, but I will.  There are several berry pies which have innovative crusts.  I happen to love crisps and Duane’s Apple-Cranberry Crisp is easy to make and Prince-approved.  There are several brownie, cookie, and cookie-bar recipes.  I am looking forward to trying Nardone’s Peanut Butter and Jam cookie bar recipe.

If you are looking for gourmet fare, this book may not be for you (you might enjoy Barbara Kafka's  The Intolerant Gourmet, but that is another post!).  But if you are looking for easy to prepare, every day meals for busy school nights, this book is for you.  I was very impressed and can tell I will use these recipes quite a bit.  I highly recommend it and am grateful to Betty Crocker for pulling this together.  I know it will benefit many families facing the challenges of cooking without gluten and casein.

Betty Crocker Gluten-FreeCooking retails for $19.99 but it is currently on sale for $14.99 if you purchase it here.  If you are trying to decide if this book is for you, check out the recipes at Live Gluten Freely here, and Duane and Nardone’s websites, here and here.  If you like what you see, you will love this book.


Thursday, May 17, 2012

Bob's Red Mill Birthday Club

Bob's Red Mill has long been a favorite of GFCF Mommy and many with Celiac Disease or gluten intolerance.  The company has more than 70 gluten free and casein free flours, cereals, baking mixes, and grains.  Their website is a terrific resource for gluten-free information and recipes.  They also have gluten free "start-up kits" with samples of their gluten-free products that you can read more about here.

I was delighted to learn that Bob's Red Mill has partnered with Autism Speaks to create Bob's Red Mill Birthday Club.

Here's how it works:  if you are interested in signing a child up for the birthday club, go to this link at Autism Speaks.  With a donation of $30 made to Autism Speaks through the link, you can register a child for the club. The birthday child will receive Bob's Red Mill Gluten Free Vanilla Cake Mix, a recipe card puzzle, a child-sized cooking apron, and a measuring cup.  The kits are limited to the first 1,000 people who sign-up.

"As a leader for the past 30 years in providing safe and delicious gluten free and casein free products, we saw Bob's Birthday Club as a way to enhance the birthday celebrations of autistic children who are on gluten-free diets," said Dennis Gilliam, executive vice president of sales and marketing at Bob's Red Mill.