27  Apr
Swim, Swim, Swim!

This weekend we were able to spend some quality time with our dear friends Eric, Randi & their PRECIOUS baby girl–Jersi. Some of their family friends invited us to join them at a pool party and crawdad boil on their gorgeous property near Waxahatchie. It was so much fun.

Since Ethan had some fears and difficulties last summer with swimming, we elected to keep him in weekly lessons year round so that this summer will be fear-free, at least in regard to the pool. Yesterday we got a preview of just how successful his year of lessons have been; Ethan had and absolute BLAST in the pool and jumped off of the diving board countless times–alone! The vest he was wearing rubbed his skin raw in a few places, but now we know that investing in a larger, more comfortable vest will be an investment in fun.

Here’s to a swimming success! I’m looking forward to the many more to come this summer.

Posted by Leigh, filed under Family. Date: April 27, 2008, 8:31 pm | 2 Comments »

[See my previous post regarding our ongoing legal battle . . .] 

An update: Our court date has been postponed. The defendants have changed attorneys and guess what?! Their new attorney is not available tomorrow; he has a conflict. <Ugh!> So, I feel compelled to say, yet again, “That’s just not fair!”

Our attorney called just before 5pm Thursday with this “lovely” news. So, while we were hoping to have something amazing to share, we simply don’t. Thanks to EVERYONE who has so kindly kept us in your thoughts and prayers regarding this very frustrating matter. You are all appreciated SO much.

And, as another matter of update, I was far too wishful in my previous post that the hearing would be to “compel” payment . . . this was simply going to be a hearing to compel financial paperwork from the sell of their business so that our attorney could do further digging and work on our behalf. <Double Ugh!>

I can’t help but wonder, Will this go on forever? Will it completely drain our savings in the process?

Posted by Leigh, filed under Family. Date: April 18, 2008, 12:24 am | No Comments »

We did it! We had a check-up and cleaning at Ethan’s dentist’s office (on Tuesday) with ZERO screaming, no tantrums–not one single tear!

Thanks to his sensory issues and Asperger’s-related fears, Ethan has had a very difficult time in the past during his bi-annual cleanings and exams. After the last uber-stressful exam in October 2007, I *knew* we needed a social storybook on the subject.

Dr. CC (Caleen Cantrell) and her staff at ChildSmile Pediatric Dentistry in Frisco (off of Main and Teel) were fantastic in accommodating me (and my digital camera) last week. After downloading the pix, I created a personalized narrative for Ethan with encouragement and helpful information. “Ethan is Brave at the Dentist” made all the difference in the world to him! We must’ve read it about a dozen times between early Saturday morning and his late morning appointment on Tuesday. (Greg also likes to think that the fact he attended this appointment factored in positively . . . I’m quite certain he’s right.)

Ethan’s wonderful hygienist (Ms. Michelle) glanced over about half-way through the cleaning with a look of happy disbelief. She even managed to obtain FOUR usable x-rays of his teeth and mouth. That’s a first! Greg and I were actually able to see where Ethan’s permanent teeth are patiently waiting to move in as well as his back baby teeth where there are absolutely NO cavities! <Long sigh of relief.>

Hooray! What a difference a BOOK makes . . .

Posted by Leigh, filed under Asperger's Syndrome, Children's Writing. Date: April 16, 2008, 3:17 pm | 2 Comments »

I’ll be reading ALL BETTER on Saturday, May 3rd, at Frisco’s independent bookseller–The Bookworm. If you can join us at 10:30 am for Story Time, I’d love to see you there. I’ll also get to read another story or two by other fantastic authors while there.

Please feel free to pass this along to any other friends/family you may have in the Frisco area!

Posted by Leigh, filed under ALL BETTER. Date: April 16, 2008, 1:46 pm | No Comments »

Last Friday, we went for a follow-up appointment to see Ethan’s Biomedical Doctor (see my first post on this subject,) Dr. Seshagiri Rao. It was a good visit; Ethan was excited to tell Dr. Rao about his new-found love of the Playhouse Disney website.

Here’s their conversation, as best as I can recall:

“Dr. Rao, I have a new website!”

You have a website?” Looking at Mom and Dad inquisitively and a little surprised.

“Yes! It is Playhouse Disney . . . I can play LOTS of games.”

“Really? Where do you play?”

“On my Dad’s computer–when he’s not working.”

“What’s more important . . . your Dad working or you playing?”

“Working is more important to my Dad; playing is more important to ME!” said with a big grin on his face and hand gesturing first to Greg and then himself.

Needless to say, Dr. Rao was impressed with this great verbal interaction with Ethan! I’ve been seeing lots of improvements with Ethan’s eye contact lately.

On the medical side, we will be making a few changes to Ethan’s protocol. We’ve changed from Nizerol to Diflucan to fight the yeast overgrowth in his system. We also picked up a new probiotic to add to his rotation of probiotics. So, we’ll be using Dr. Edo’s, Pro-Bio Gold and Therbiotic Complete in 2 week rotations to provide all of the good bacteria his system is lacking. I also requested that we add a digestive enzyme in hopes that it will help “break the yeast wall” and aid in getting the Diflucan inside to effectively kill those nasty boogers. Dr. Rao recommended Kirkman’s DPP-IV and we’re giving it “a go.”

We’re also looking to add some L-Theanine and are going to try a spray version called EndoTrex. With lots of issues with compliance and outright defiance lately intermixed with some pretty extreme tantrums and impulsive aggression, Dr. Rao wants us to give the EndoTrex spray at the trigger of behavior. A trial presented itself tonight. Not sure if/how it helped the situation, but I’ll be watching again, closely, the next time a trial presents itself.

Finally, our next biggest concern is ridding Ethan’s body of the Mercury, Lead and Arsenic. We recently did a challenge of DMSA which pulled more of each of the elements, but still not quite enough, so we’re going to do another challenge with EDTA added to see how much is pulled. If the results are good, we will likely begin regular chelation with DMSA (oral) and EDTA (in suppository form) this summer. Otherwise we may need to consider IV forms of chelation, which have proven to be very effective in many families with children like Ethan.

Very effective; that’s exactly what we need and want. Ethan’s system simply has too much Mercury, Lead and Arsenic and cannot process them out without assistance. I pray that we find that “effective” combination of agents soon.

Posted by Leigh, filed under Asperger's Syndrome. Date: April 14, 2008, 8:57 pm | 1 Comment »

Another successful school visit took place this afternoon with 6 classes of Kindergarten kiddos in Frisco ISD. I am always amused and inspired by school visits. This visit proved especially fun thanks to having my own personal fan club in attendance. [Teeheehee!] Thanks, Melissa, for meeting me at the school and helping to pass out bookmarks and signed books.

After the kind librarian, (big thanks to Nancy Fuller,) asked me to share with the second group of kids how I get new ideas for writing, they listened intently. They all giggled when I shared that some of my best ideas come while I’m in the shower. Then, an adorable little girl in a pink shirt shared with us that she likes to write her ideas down while on her bunk bed! Her enthusiasm and declaration led me to share with them that many of my ideas come when I’m just about to fall asleep, thus it is necessary to keep a pad of paper on my bedside table; sounds like this little girl is going to have to do the same in the future. Who knows, maybe she already does . . .

Here’s to the next generation of writers! I’ll be watching for Little Miss Bunk Bed’s first bestseller in about 25 years.

Cheers. 

Posted by Leigh, filed under Children's Writing. Date: April 7, 2008, 8:00 pm | 1 Comment »

06  Apr
Elijah’s Retreat

Friday I was moved to tears as I learned of a couple, Kathie and Jeff Moore, who are actively working to create a retreat for families living with Autism! [In honor of Autism Awareness month–I am passing this along to everyone I’ve ever met–quite possibly everyone I’ve ever shared cyber-space with; please bear with me!]

The Moore’s have an 8 year old grandson who suffers from Autism, named Elijah, whom they adore. Elijah’s Retreat is being established in his honor, as a tranquil destination for families living with Autism. Located in East Texas, Elijah’s Retreat will have private, two-bedroom cabins, each with a small kitchen. There will be a playground, a lake for fishing and access to gentle ponies, horses and therapy dogs. The Moore’s vision is to offer nightly stays to Autism families for as little as $25! Yes, that was not a typo–a private, two-bedroom cabin with a kitchen for only $25 a night!!! (Since most of us spend ton$ of money on our children’s therapies and services–this would be an almost unfathomable gift; an ultra-affordable vacation or weekend getaway where our children will be 100% accepted no matter how they behave! Cue the tears!)

Through several generous donations, the process to build and furnish the first cabin and create the retreat on the Divine Acres Ranch, has already begun. However, with 6 total cabins planned, the Board of Directors is still looking for donations of many items, including: appliances, beds, linens and towels, kitchen supplies, sleeper sofas kitchen/dinette sets, other cabin furnishings and of course–prayers.

If you, your family, your church or your company might be willing to support the development of this amazing retreat, please visit the Needs and Praises page on their site to see how you can help. A mission team from Mississippi has offered to help build the first cabin. Imagine if all of the following 5 cabins were built by other mission groups . . . now that would be tremendous.

Hearing about this project filled me with such hope and inspiration. I’ve offered to donate some of my time to help with PR down the road for Elijah’s Retreat. If you are moved by the genosity of this family and vision of for Elijah’s Retreat, I’m sure the Moore’s would love to hear about it. Even if you are not able to give items or money–the power of positive energy, thoughts and prayer are absolutely invaluable. Feel free to post a comment to this entry (I’ll pass the word along) or contact the Moore’s yourself via the website!

Finally, if you have heard of other similar projects/retreats being established for families of autism around the country, I’d love to hear about them. Drop me a note through the comments form.

Special thanks and prayers go out to the Jeff and Kathie for taking on this generous mission.

Posted by Leigh, filed under Asperger's Syndrome, Family. Date: April 6, 2008, 12:35 am | 1 Comment »

Today is a very special day; Around the world, people everywhere are focused on increasing awareness and knowledge about Autism and Autism Spectrum Disorders, which now affects one in every 150 kids, 1 in 94 boys. 

April is Autism Awareness month. As such, I challenge anyone who reads this to learn something you didn’t know about Autism, during the month of April. Read an article . . . watch a news show dedicated to ASDs . . . talk to a family “living in the trenches” . . . heck–babysit for a family you know with Autism in their lives to allow them a night out! I imagine you’d learn a few things that way.

With statistics rising as quickly as they are, if your life is not currently affected by Autism, chances are it will be soon. If not through one of your own kids, it may be a niece or nephew, a grandchild, neighbor or your kids’ playmates/classmates.

It is of utmost importance that parents, preschool workers, nursery workers and pediatricians be vigilant of the signs of autism. Fortunately, there are some amazing groups which can help to educate us. Here are links to some of my favorite websites:

Autism Speaks | Autism Society of America | Talk About Curing Autism

Online Asperger Syndrome Information and Suport | Autism Research Institute

Tonight, Larry King will be hosting Jenny McCarthy, mother of 5 year old Evan. McCarthy has proven to be an amazing advocate for Autism families around the country because she is a High-Profile Hollywood Mama unafraid to share her thoughts, opinions and all that has worked for her precious son. I’ve watched her speak on many shows in recent months and have read her book. Louder Thank Words: A Mother’s Journey in Healing Autism was both heartbreaking and encouraging. 

Our story: My wonderful, unique and handsome son, Ethan, is one of the 94 boys mentioned above. Ethan lives daily with Asperger’s Syndrome, a high-functioning form of Autism. In the 15 months since his diagnosis, Ethan has made tremendous gains. We are thankful that we were able to find diagnosis early and begin interventions. According to my extensive reading, early intervention is the key to successfully treating ASDs and enabling our kiddos to lead happy, fulfilling lives. I’m always willing to share more information when asked–so ask if you’d like to know more about our journey.

Thanks for your attention to this matter so unbearably close to my heart.

Posted by Leigh, filed under Asperger's Syndrome. Date: April 2, 2008, 1:17 pm | 1 Comment »

Lately, Ethan has taken the phrase, “That’s not fair!” as his personal mantra when things aren’t going his way.

Well, life just isn’t fair, is it? I’m not tempted often to say it myself, but I’m giving myself permission tonight; That’s just not fair!

In a couple of weeks, Greg and I will be in court to “Compel” payment from a legal settlement with the Moving & Storage Company we used to move to Frisco in 2006. On Friday, April 18th, the matter is scheduled to go before a judge in McKinney regarding the company’s owners neglect to pay us after the first two monthly payments, which was last August, by the way.

We need your prayers and positive thoughts, once again, in this matter. $400 dollars a month is a BIG cut in our monthly income and without it we’ve had to rely on our savings account far too much to cover our monthly expenses. Add to that fees for our attorney and we’re quite frankly–worried! I want to continue to offer Ethan the therapies and activities which have led to his tremendous progress in the past year-and-a-half, while continuing to spend my days and evenings at home with him. Taking a job, part- or full-time, would be very taxing on my emotions and energy level at this point. When Ethan is in Kindergarten all day next fall–things will be different–but for now, me working just doesn’t seem like a good option for our little guy. Especially with summer just around the corner putting Ethan with me 3 more hours per weekday than at present.

So, while I really don’t want to be a whiner, I tend to agree with Ethan in this matter: That’s just not fair!

This company LOST our stuff and has yet to repay us for it. We need the money . . . they agreed to pay us . . . they’re not paying us. Again I say, That’s just not fair!

Thanks in advance for your prayers and positive vibes as our court date approaches.

Post Script: The company mentioned above is no longer in business, so don’t worry about them doing the same thing to you that they’ve done to us!

Post Post Script: This is not an April’s Fools Joke! Oh, how I wish it were . . .

  

Posted by Leigh, filed under Family. Date: April 1, 2008, 10:28 pm | 7 Comments »