Saturday, January 23, 2010

Make your home safer...

Toxins are anything that create stress on the body because they are challenging for the body to excrete. Children suffering from autism and other delays are particularly susceptible to these toxins. You will be astonished at the toxins we bring into our homes every day, from cleaning products & bath products, sunscreens, pajamas, crock pots....we have created a toxic environment in the very place we live and breathe and sleep.

Please join me on Thursday, February 25th at 7:00 p.m. for a presentation on how to detoxify your home. I (Sarah Smalley) will be the presenter at Pediatric Therapy Partners' Parent Information Series. Join us to find out what you can do to make your home safer. Pediatric Therapy Partners is in Lewis Center at 640 Enterprise Drive, Suite C. I would love to share this information with as many families as possible, so the meeting is free and open to all who are interested. If you have questions, feel free to email me at autismpuzzlemom@gmail.com. Hope to see you there!

Sunday, January 10, 2010

A Biomedical Approach

No one yet knows the cause of autism, so I can't understand why anyone thinks a possible avenue of treatment isn't worth considering. Biomedical interventions are often tried with kids on the autism spectrum, yet this is still such a highly controversial topic in many therapy centers, schools, and even with some parents. So here is my two cents about the biomedical approach.

Do I believe biomedical interventions alone can recover your child? not in 99% of children. Do I believe biomedical interventions alongside the right therapies can give you your child back...help them reach their full potential...in some cases even reach full recovery? absolutely.

Biomed is about more than vaccines. Brady lost some skills (waving, clapping, speech) right around the time of his one-year vaccinations, which included a flu shot. I don't know if that was his "trigger", but I think its very possible. Brady also shows dangerously high levels of aluminum and other metals in blood testing, which are used as fillers in our vaccinations. These facts led me to the decision that I would not give Ty any vaccinations from birth, a decision I made long before we started down the biomedical path. The problem I think a lot of people have with the biomedical community is that they assume all biomed is about is fighting vaccinations. But the truth is biomedical is about so so so much more than vaccines.

Other people who are uneducated on biomedical therapies believe all it is is a GFCF (Gluten Free Casein Free) diet and nothing more. The GFCF diet can be a great starting point for a child, but again, there is so much more. I have done the diet with both of my children for extended periods of time, and I can say that the diet alone did not progress either of their development. But alongside other biomedical options it has helped to heal their leaky guy issues, so it was worth the time/effort/money in my eyes. I know some children who have drastically improved within days of beginning the diet, which to me is another reason to explore this biomed path with each and every child.

I believe every family (who can afford to) should give biomedical interventions a chance. You can start with your own pediatrician. Some pediatricians are open to helping you get the proper testing, writing prescriptions for an anti-fungal or anti-inflammatory drug, or whatever the starting point may need to be for your child. Since so many of our kids do not consume a proper diet, you can work with your doctor on supplementing the vitamins and minerals your child is deficient in. As you progress through this journey, you will want to get a DAN (Defeat Autism Now)doctor for your child. We have worked with two different DAN doctors, one locally and one we travelled all the way to Florida to see...and both doctors are excellent and know everything there is to know about the biomedical options available to our kids.

Bottom line is this: If you have any desire at all to explore biomedical options for your child: 1. Buy the book "Healing and Preventing Autism" by Dr. Jerry Kartzinel & Jenny McCarthy. 2. Get your child on the wait list for one or more DAN doctors and talk to other parents about these doctors to pick the best fit for your family. 3. Talk to your pediatrician to see what help they can offer through the process. 4. Start keeping a log of food changes you make, supplements you introduce, behavior changes, etc from day one of your biomedical journey. 5. Be prepared to pay out-of-pocket for most if not all of your biomedical expenses.

This blog has been a little all over the place, but that is a good representation of the biomed world I believe. If this is a path you choose to go down you will learn more than you want to know about detoxification, brain and gut inflammation, yeast and clostridia overgrowth in the GI tract, supplements, diets, etc. But is you are willing to learn and grow and become empowered for your child...it could be worth it. We are still early in our biomed journey - 18 months in with Brady & 6 months in with Ty - but we have already seen some obvious improvements, including speech finally from Brady at age 4. We still have a long, long way to go...but we are working at it every day. I will definitely write more on this subject in the future :-)

Thursday, January 7, 2010

Music Therapy


After my last blog there seemed to be quite a bit of interest in music therapy, so I wanted to share some information about that with you now. I don't pretend to be a music therapist or an expert on the subject in any way...if you want a definition of what music therapy is I would recommend visiting: www.musictherapy.org

We tried a music therapy group through our county hosted by a licensed music therapist back when Brady was only 19 months old...and it was a disaster for him! We didn't yet know he had autism, only speech delay and sensory processing disorder. The group consisted of 5-6 other children who were calm and timid and sat with the therapist as she played her guitar and smiled and played with the instruments..and then there was Brady. He wouldn't stay sitting at the circle, he had no interest in anything the therapist or group was doing, and he ran around the big empty room for the entire hour every time we went. After a month of this, I regretfully called and withdrew him from the group. He definitely wasn't getting anything from it and I feared he was taking away from the other kids' experience. I was saddened because music had played a big role in my life and I adored music and had hoped my baby boy would too.

We really didn't push music much again until Brady's 3rd birthday. He had just started doing speech therapy at Helping Hands and his speech therapist mentioned to me that he might really benefit from 1-on-1 music therapy. They had a music therapist who wanted to work with Brady...and so here we went again. Only this time...what different results!!!

Brady began 1-on-1 music therapy with Valerie the fall of 2008, and for the first few months he showed some interest, but not a lot. But as time went on he grew more and more to love his music therapy. There's nothing better than finding a therapy that can help your child that they love to do at the same time! Then fall of 2009 when Brady's words started to come, I finally realized just how much music therapy was doing for him. Some of his best speech comes during all the wonderful songs Valerie does with him..."hi" during the hello song, "Brady" during the hello song, "Vavavee" during the hello song for Valerie, he approximates "Peebut" and "jewy" for peanut butter and jelly during the PBJ song, and more. In music therapy and at preschool he now follows along with many motions that go along with familiar songs, he really cues into music more than ever before. Brady's music therapy has been INSTRUMENTAL in his language development and his imitation skills.

Knowing all of this, I didn't hesitate to put Ty in music therapy as well. He began 1-on-1 music therapy with Valerie at just 18 months old. It was a slow start, he was having "mommy separation" troubles when we began...but we pushed forward. Just 3 months later, Ty is taking Valerie to the piano and wanting her to play for him, he is showing some interest in her playing the guitar and even strumming it himself, and he is using the mallets to play his drum at home that Santa brought him. I am hopeful that music therapy will do the same amazing things for Ty that it has done for Brady.

Music therapy is available in several ways: 1-on-1, pairs, groups, at therapy centers, in a home setting. There is some funding that will pay for music therapy: autism scholarship (as long as you are working on IEP goals in the therapy), early intervention funding in many counties, and others. Consider trying music therapy with your child, music may speak to them in ways we can't even see. And if it doesn't go perfectly from day one...try again...I'm sure glad I did with Brady :-)

Sunday, January 3, 2010

Mother Knows Best

I've been missing from the blog for several weeks, but as you all know well...the holidays do that to a mom! I hope that you all had a wonderful holiday with your families...and I promise to get things going again better than ever with the blog!

I called this blog mother knows best because I truly believe that. I believe this to be true with any child, but even more so with our little ones on the spectrum. The lesson to take from this blog is if you don't agree with it...don't do it...if you think it can help...try it...and if you have a strong feeling about something, whether good or bad...stick with your mommy gut!

My biggest regret in my journey with Brady is his first year of therapy. Brady received his diagnosis in June of 2007 when he was 21 months old. In October, just after his 2nd birthday, we began an in-home ABA therapy program. I hired 2 wonderful young ladies to work with him and we started out at 20 hours each week. When he received his diagnosis, this was the only option presented to me...sort of a "our way or the highway" it felt like. So, I read all the books they suggested, which basically said the only thing that would work at all was ABA...so I was convinced. I put every ounce of my faith in the organization that was running our program. If they said jump, I said how high. If they said we need a big-little program, I bought the materials. If they said he is ready for potty training at 33 months, I paid for a potty party, bought underoos, threw out the diapers, and was in hard core potty training mode. I took their word as the gospel, and that is my biggest regret. I don't doubt they wanted the best for Brady, they do care about our kids...but they didn't know him like I do. They reassured me every month that first year that things were going well, but when that first year therapy anniversary came around, I sat back and looked at the big picture, and we really hadn't gotten anywhere. That is when I knew things had to change.

ABA is the most widely accepted treatment for autism, and for some kids it is the perfect fit. For Brady, at 2 years old, it was not. I wasted too much time, too much money, too much energy on this one avenue. I wish I had placed more efforts in other areas sooner - biomedical options, music therapy, play therapy, more speech therapy, more occupational therapy, groups, etc. Learn from my mistakes...look at all your options from day one...don't assume the biggest option is always the best option...talk to everyone and find out what is working for them. Do your absolute best to keep your child with peers, whether it be in a preschool setting, social groups, play groups, church nursery...they need to be around their peers to learn from them. Brady was removed from other children, from the typical world almost in doing all of the ABA hours that were recommended to us at such an early age.

I am not saying here that ABA is bad - we still incorporate some ABA programs into Brady's every day therapies. I am saying look into all of your options, give your child a variety of therapies, find what fits best for your child, and TRUST YOUR MOMMY GUT!!! If something is working, build on it, make the most of it. If you think something isn't working...do something about it now.