Beautiful Son

A few weeks ago, during one of my Autism Google-a-thons, I came across a trailer for the documentary, Beautiful Son.  As soon as I watched the preview, I was dying to see the documentary in its entirety. I searched Netflix to see if I could rent it. Nope. Searched the public library’s catalog to see if I could check it out. Nope. So I bit the bullet and bought a copy online from the film’s website. It was well worth it!

Don and Julianna King did a wonderful job telling the story of their beautiful son, Beau along with what so many of us in the Autism community have experienced and seen in our own children first hand. Watching home video from the first years of their son Beau’s life was like reliving Aidan’s first two years. I could relate to their experience 100% and it made me want to take everyone in Aidan’s life and say, “I need you to watch this documentary. This is what happened to us, and this is what we are up against.”

Beautiful Son helped me heal a piece of my heart that was broken the day we received Aidan’s diagnosis. I can’t put it into words, but something about the way the King’s delivered their own story alongside so many others made me feel at peace. It was the first time that I could breathe without feeling like I might drown. It was the first time I was able to look at our situation and honestly say that even if Aidan never loses his Autism diagnosis, it’s ok. I know that our family is giving the fight of our lives like so many others, and Aidan will have the best possible life he can have.  I wish more people knew about this movie! I plan to share it with all of my warrior friends!

http://beautifulson.com/

Where we are today

Here is a summary of the things that we feel have helped Aidan the most since receiving the diagnosis:

ABA

After receiving the Autism diagnosis, Aidan was eligible for 10 hours of ABA therapy per week under my husband’s insurance plan. We found two wonderful therapists for him to work with after school, and have seen many improvements since he started. His receptive communication skills have really improved. He has become interested in puzzles again (completing 48 piece puzzles on his own)!  He can now follow two (and sometimes three) part instructions! He can answer a few questions (What’s your name, how old are you, etc.).

ABA has definitely been a huge push in Aidan’s progress.

Occupational Therapy

The doctor also referred Aidan for OT twice a week. This has also been really huge in his development. His OT is trained in Floortime/DIR and when he is working with her, you really see a different child emerge. He has much more spontaneous communication and imagination. Floortime just seems very organic, while ABA can be a bit rigid at times.

Our ABA therapists are very playful with Aidan, however, I find that with ABA, it is easier for Aidan to get stuck on scripting. Sometimes after a session he will say, “do this” or “eyes on me!” and you know it is from an ABA session. Floortime never uses language like, “do this” because every lesson flows naturally with whatever the child seems to be focusing their attention on during a session.  It’s like play therapy.

I wish we could afford to do 10 hours a week of ABA and 10 hours a week of Floortime to get the best of both worlds. What I wouldn’t do to win the lottery and pay for any and all interventions that may benefit Aidan! : )

Methyl B12

Just as Aidan began ABA, we started giving him Methyl B12 injections every three days. This was another great “push” in the progress of his development. We did not notice anything with the first few shots (just some increased energy), but by the 3^rd injection we really noticed an increase in language, and he finally started to include us in his play. He would come find us in another room and say, “Come play in the playroom.”  It was wonderful!!

Preschool

Aidan began special education preschool one month after being diagnosed. Honestly, the only progress that I have noticed from this was in his ability to transition from school to home and vice versa. It was VERY hard for him for the first month or so, but I think that having that daily routine really helped him become comfortable with making changes. We started the Methyl B12 injections about a month after he started school, and the teacher told us that his progress during that exact time was “exponential.” 

At the end of the month we will move Aidan to a new Charter school that has opened specifically for children with ASD. All of the teachers and aids are trained in ABA. We are very excited!

Andy Cutler Chelation Protocol

Aidan recently did a DMSA challenge test, and we found that his lead levels were off the charts! He was moving some other metals as well (mercury, aluminum), but from all of the other parents I have talked to (and the reaction of our DAN! Doc), I think Aidan is one of the exceptionally high cases. We went ahead and did an EDTA IV challenge as well to see if that would move other metals as well as the lead. It didn’t, and unfortunately I don’t feel like the EDTA was a good thing for Aidan. Ever since we did this he has been tapping his teeth together obsessively and he seemed to have some tummy issues.

Getting the results back put a lot of his developmental issues into perspective for me, but at the same time it was scary as hell. Results like this make you start thinking that there is a chance your child has PERMANENT brain and nerve damage.

I immediately began researching different chelation options and read Amalgam Illness. I found that Andrew Hall Cutler’s protocol was the safest thing for Aidan. I encourage any parent that is considering chelation to read his book. In my opinion this is the ONLY way to chelate. Other options are far too dangerous and will redistribute metals in the body.  I wish I had never done a challenge test!

We just recently finished round 6 using both DMSA and ALA, and we have already seen some wonderful gains. He is putting together longer sentences on his own. He can finally ride a tricycle! He also seems to be going out of his way to get our attention and try to converse (of course it is not yet appropriate, but he tries!). He also is beginning to show the intial signs of empathy- his OT was pretending to cry and made a sad face. Aidan made a sad face and said, “you’re sad.”  That was the BEST!!!! I can’t even tell you how many times I have been hurt or cried in front of him, and he just goes along as if nothing is wrong.

Yeast Treatment!!!!

A steady yeast protocol has been so important to Aidan’s progress. When yeast gets out of control I feel like it masks all of his gains. Right now we just use caprylic acid, probiotics, culturelle, and goldenseal. I was very aggressive with this when we started chelation. I dose throughout the day (always at least 4 hours apart so that your antifungal is not canceling out the probiotic). For the first 3 weeks of chelation, I would dose caprylic acid/ goldenseal when Aidan woke up, then probiotics/culturelle around noon, then another dose of caprylic acid/goldenseal in the late afternoon, and a nice big dose of probiotics/culturelle at bed time.

I always suspect he is having yeast or bacteria issues when I see puffiness or darkness under his eyes. Usually it is bacteria when it is accompanied by aggressive behaviors. 

ABA Therapy

All of the books that I had read up until this point really pushed ABA therapy. Citing study after study about how many children can live a “typical” life with early and intense ABA therapy (see here  http://www.lovaas.com/research.php ) There was just one problem…ABA can cost $35,000 or more per year. How on earth could we afford it? 

The first time I read about ABA was in LeeAnn Whiffen’s book, A Child’s Journey out of Autism.  She and her husband were faced with the same dilemma, and her husband made the analogy that if a kidnapper was holding their son hostage, they would pay any amount to get him back. I think of that analogy every time we are faced with the financial burdens of raising a child with Autism. It sums up the way I have always felt about Autism. It kidnapped my son when he was just 2 ½, and now we are fighting like hell to get him back.

We had put Aidan in a local non-profit program twice a week that used ABA methods during Occupational Therapy. It seemed to really help him, but 2 hours a week would not be enough.

I began researching Floortime and ABA to see if we could get either covered by insurance. I found that ABA would be covered if Aidan had a diagnosis of ASD (including PDD or Aspergers). I realized that we needed to get him a full blown diagnosis before he would be eligible for the services he would need to excel.

I tried to get an appointment with a Neurologist or Developmental Pediatrician, but needed our primary doctor to write a referral. When we went to Aidan’s primary care provider, again I had to fight. I showed him the evaluation that illustrated just how far behind Aidan was, but he still looked at me like I was some obsessive mother trying to find SOMETHING wrong with her child. I almost broke down crying in his office. Here was my son, almost 3 ½ years old at this point, and he couldn’t even tell you “hello” or “good-bye” he couldn’t answer what his name is, or how old he was. It does not take a genius to see that this child is not where a typical 3 ½  year old should be! He finally agreed to give us the referral, but made it very clear that he thought we were too concerned with Aidan’s development.