Potty Training at Last!! Hurray!!

For any parent potty training is a challenge.  For us, parents of ASD children, potty training can be downright difficult, hair pulling and just plain awful at times.  Before we knew that Aleks was on the spectrum, we thought she would be potty trained sometime after her second birthday.  Then came her third birthday and we thought for sure that this is it!  Then came the autism diagnosis and we just prayed that potty training would eventually happen.  We thought last August that we might be close.  She went on the toilet, told us she had to go, had a great day wearing panties then kaput she was done with it.  Seriously, done!  She wanted nothing to do with going the bathroom and would actually freak out if we suggested it.  

This past fall had its ups and downs with potty training.  Some days she would go for her teachers at school.  Other days she would have a wet Pull Up.  We were sending her to school with panties and a Pull Up over them.  It was suggested that this would help her to recognize when she was wet and would help avoid accidents by having the Pull-Up as a backup.  The good news is that she would be so excited when she went at school and got a sticker for going.  We were also doing the stickers, reading the 'potty' book and rewarding her with a sticker on her potty progress chart here at home.  We also tried pictures to explain the process and were setting the timer as a reminder.  It was a sloooow process.  

Finally, last Sunday I had an epiphany.  All of her teachers and therapists were telling us how smart she is.  They were telling me that she understands and is capable of so much more than even we all know.  So I decided that if this is true and I believe it is, then wearing a Pull Up was just giving her the excuse to go in her panties/Pull Up combo.  So on Sunday, I told her no more Pull Ups and that she was going to wear panties today and go on the toilet.  She still wasn't telling me when she had to go so I would set a small timer, put it on the coffee table and when it went off we would head to the bathroom.  What I found out is that she can hold it a long time and is capable of being potty trained.  In fact it's been a week now and we've had just a couple of accidents.  She still isn't telling us when she has to go, but she also is willing to go on the toilet when she has to and understands the premise.  She's going to school dry, coming home dry and using the toilet at school as well.  Even today she went after her gym class at the gym!  

Potty training is not something I ever thought I would openly talk about like this.  It's also not something that I would have thought would be such a celebration and prayer laden activity.  For some children it's just a right of passage, but for our daughter with autism it is another miracle and huge developmental accomplishment.  It is huge in our world and in hers.  I didn't know if we would be here by her 4th birthday (March 27th) but I thank God that we are.  It just shows me that she is capable of so much and has come so far.

Blessings-

Melissa

To ABA or HBOT or Not?

Are we missing it by not having Aleks in ABA therapy?  Should we also be trying HBOT?  

It has been several months since we found out that Aleks has autism.  We jumped into the diet and supplements and are thrilled with the results!  We also dove into working with our DAN! doctor, ST and OT plus have Aleks in a special preschool with an amazing team of teachers. What I am wondering now, is are we doing enough?  Aleks will be 4 in a month and we are questioning ABA and HBOT because it keeps coming up.  I believe in God's bread crumbs and am just wondering if these are part of our crumbs to follow and what we should be doing about it.  

I talked to one former ABA teacher who said that it's not for everyone and who was not a fan of the 40 hours a week.  Honestly, I am not willing to cancel Aleks' school, OT & ST to get her into the 40 hours of ABA that some say are recommended.  I am willing to do half of that in addition to everything else, but my gut says for her the 40 hours isn't right.  I've been surprised at the few outspoken parents who tell me that it's not worth it if I don't do the 40 hours and that I am cheating her by not doing ABA.   We honestly couldn't have handled it before now.  Even now and with TEFRA here in MN the cost for us will be outrageous.  We are willing to do all we can for her, but is ABA the right fit?  How do we know if it's right for her?  Also, we have the opportunity to try HBOT.  Our DAN! doctor in Stillwater is one of the few around here who offers the oxygen chamber.  We are still researching HBOT at this time to try and figure it out as well.

In the short time that we've been in this journey I feel like we've come a long way.  The problem is that it is a journey and we have to much further to go.  If you have any suggestions, thoughts or just insight please post a comment and let me know.  Thank you!

Blessings-

xo

Melissa

Follow the Bread Crumbs

I just finished working my radio station's annual radiothon to benefit children here in the Twin Cities.  We raise money for two very special organizations that help children with cancer and disabilities.  As I was interviewing different parents I was reminded of one very special mother that I had met last year.  Her name is Theresa Lao.  She had two little boys with a condition that caused their skin to shed off of their bodies.  When I met her there was no cure for this condition known as EB.  Yet, she continued fighting and petitioning for her sons and finally found Dr. Waggoner at the U of M Fairview Children's Hospital who was willing to try to find a cure.  She moved her two sons out to MN from NJ and lived in a hotel so that they could be part of a medical trial that just might work.

One of my questions to her was this, "How did you know the next 'right' thing to do for your children...How did you know what your next step would be?"  Her answer was simple, "God always gives me the bread crumbs and I just have to follow them."  She was referring to the Hansel and Gretel story and it made a visual impression on me that stuck.  I met her in the Fall of '07 not knowing how my life would change that following Spring.  That Spring I would find out that my daughter had autism.  I have so often thought of Theresa and I have taken the 'breadcrumbs' piece of advice to heart.  Whenever I wonder if I am doing all that I can for Aleks and question what I should be doing next, I think of the breadcrumbs.  I have found that God truly does give us breadcrumbs of knowledge.  He'll use someone else to mention something that is working for them, I'll then get an email about it or have a second person mention it and then it hits me that this is a breadcrumb moment.  I have found that He'll keep giving me the breadcrumbs, but that it is my job to follow up on them.  It is also my job as the mom of a child with ASD to be aware and open to wherever God is leading us.  

My advice to parents struggling with the question of 'What next?' is this, look for the breadcrumbs.  Just be prepared that they may not be where you thought they would be and they may not be what you expected at all.  You may also be surprised at who God uses to show you a breadcrumb.

Blessings-

Melissa

The Debate on BIomedical Including the GFCF Diet

There seems to be an ongoing debate between parents of autistic children, doctors and even friends about the GFCF diet and other biomedical treatments.  I have met mothers and fathers who are open to trying anything,  parents who are scared and overwhelmed about making any kind of a change and other parents whose doctors have told them that it won't work.  To those doctors, I say shame on you.  Shame on you for destroying the chance that a child with autism could get better and shame on you for destroying the hope of a parent.   I know my own personal convictions on biomedical.  I've been to these 'doctors' and heard their lack of belief.  These are also the same doctors who told me that nothing was wrong with my daughter and that vaccines are not harmful.  Here is my response,  "There is hope and healing!".  For us, the diet, supplementation, therapies and schooling have been her miracle treatment.  In Dr. Bock's book he talks about developing a healing program.  This is ours and thanks to it we have a totally different daughter then we did a year ago.

The problem is not in whether the diet works, but in the support we give one another.  Not just between parents of autistic children who do and don't practice the diet but also between spouses.  One of the things I am so grateful for is that my husband had his doubts, but was willing to try.  Before we had read all the books and were convinced in the science behind biomedical, we knew we had to try.  The question became, what is the worst that could happen?  She'd try different foods, get good quality supplements and we'd be out a little money.  In the long run it seemed like a small price to pay for a ray of hope and the chance at recovery.  Today I am so grateful that we tried.  

I have to point out that the diet, supplementation and therapies aren't the answer for everyone. For some children it won't have the same results that we have had.  For some the healing will be more moderate, but for some it will be truly a miracle.  The best part is that it won't hurt your child.  Your child won't get sick from taking out the gluten or dairy.  They won' t get worse.  The great news, they just might get better.  Isn't that worth the chance?

Supplements - Part of the Healing Equation

I am often asked about what supplements Aleks is taking and where I came up with the list. Before I put the list of her supplements up, let me first state again that I am NOT a doctor. I am working with Dr. S (DAN! Doctor) , have done my own research and have also had blood/stool/urine and hair analysis done. This is the list that works best for Aleks, but it is not a one size fits all supplement list. I strongly recommend Dr. Jaquelyn McCandless book, Children With Starving Brains. It explains the supplementation and how it helps to heal the body. I used the results of Aleks' tests, Dr. S and p. 116-117 to come up with her supplementation program. Dr. S has been key in helping with the dosages, supplements and the why.

Please note that all supplements are mixed in either organic apple juice or Dari-Free. I also started using an additional flavoring with the apple juice to hide the supplements flavors. I use either Kirkman Labs Strawberry Flavoring or Stevia Valenia Orange Flavoring (Fresh & Natural Grocery Store).
**Probiotics & Digestive Enzymes should NOT be taken at the same time.

Super Nu Thera - Hypoallerenic Capsules -- 1 capsule 2 x day in juice

Nordic Naturals Children's DHA strawberry flavor - 1/2 t. 2 x day (Whole Foods or Fresh & Natural)

L-Carnitine - 1000 mg day -1/2 t. 1x day (Dr. S office in Stillwater, MN)

Unbuffered Vitamin C - Unflavored - Hypoallergenic - 1/4 t.(1100mg) 2 x day (Kirkman Labs)

Zinc- Hypo-allergenic - 60mg - 20/40 breakdown in AM & PM juice (Kirkman Labs)

Calcium - Hypoallergenic - 1000mg - 1/4 t. -Mix with lunch Dari-Free & Probiotic (Kirkman Labs)
*Vitamin D - 175mg - 1x day as part of the Calcium powder

CoQ10 - Hypoallergenic - 50 mg. day - 1 -25mg capsule - 2x day (Kirkman Labs)

Probiotics - 1 capsule - 2x day in DariFree - Metagenics - Ultra Flora Plus DF Capsules - (Dr. S office)

Faith, Hope & Healing-

Melissa

Manic Since Being Sick

I am writing this blog and am totally frustrated at the moment. Aleks was sick for 3+ weeks, had 3 different antibiotics because some weren't working and then 2 rounds on 1 antibiotic. We know that in the healing of her leaky gut that antibiotics are not always good for the healing. What we didn't realize is that in healing her massive double ear infection and temperature of 104 we would see such regression in her autistic behavior. To say it has been rough is an understatement.
While on antibiotics, Aleks started walking on her toes again, using more 'baby' words and just overall irritated and manic. We talked with her ST and learned that there is a typical regression of 2-3 weeks after an illness and then she will be back to her post diet, therapy self. It has been soo frustrating to watch her suffer again and to experience the manic, controlling behavior again. My biggest fear at the moment is that this behavior will stay and all the progress we made will be gone. As I just wrote that, Aleks came up and gave me a kiss and told me that she loves me. Thank you God. I think that is His way of reminding me that although we've regressed we aren't back to where we started.

Faith, Hope & HEALING-
xo
Melissa

My Daughter Came Alive During Her High Fever

The other night my daughter's fever spiked to 104.7 after being diagnosed with an ear infection. We gave her a fever reducer, got her fever down to 102.5 but were still worried. Yet, the 102+ fever brought about something amazing. As Aleks crawled in bed with us at 2am, she started chatting away. Although Aleks' speech has been improving with speech therapy, she still struggles with her vocabulary and comprehension. That night at 2am she wasn't struggling. In fact it felt like she had just awoken from a coma and had so much to tell us. She was talking about school, her books, her babysitters dog and what was it's name. Her pronoun use was correct and words she has never said before were flying out of her mouth. Both Bill and I turned on the lights and just watched her talk. She couldn't say enough and seemed to have so much to tell us. Bill looked at me at one point and said, "What is going on?". That's when I remembered in my research that I had read about a fever phenomenon.

The sad part of this is that once the fever was back to normal so was my little girl's autism. It almost seems like it was a dream, but then it happened again last night. Her fever spiked to 104.7 and she was lethargic and miserable. The fever got down to 102.4 and she started chatting again. My friend Sandy came over to check on her after I called her in a panic and witnessed it too. Aleks was affectionate, chatting and overall just happy. This morning that little girl is gone. Her fever left, her sickness (ear infection and a viral infection) is still here and the chatty happy little girl is also gone. I told my husband that it seems like a cruel joke. I love his answer, that maybe it is a glimpse of things to come. That is what I am now holding onto. What I have learned is that my little girl is still trapped inside and wants to come out. This has renewed all my efforts to find her healing formula and get her out of the demon grips of autism.

Faith, Hope & Healing~
Melissa