Beat down.

“God puts rainbows in the clouds so that each of us- in the dreariest and most dreaded moments- can see a possibility of hope.” – Maya Angelou

The last few weeks have been roses and sunshine for us. I felt like I was beginning to see the light at the end of the tunnel. This always seems to happen right before the storm comes. This is the illusion that Autism always presents. Autism gives you glimpses of what is possible, and then snatches it away never to be seen again, or possibly to be seen from time to time. It is enough to drive a sane person mad.

Yesterday was a pretty bad day for us. Aidan’s therapist told me that he was getting a bit aggressive with her, and tried to scratch her during their session. Fifteen minutes later, he came to me with a race track he wanted to put together, “fix it, please!” so I started to put the pieces together for him, but had some trouble lining it up. Well, out comes Mr. Hyde. Aidan lost it! He became extremely frustrated with me for not figuring it out fast enough and he grabbed at my neck, scratched up my face, and the only way I was able to stop him was with the assistance of his behavior therapist.

We finally calmed him down, but then five minutes later he came over to me and said, “The word bubbles are all done!”  I wasn’t sure what this meant, or what he wanted me to do (the other wonderful fun of Autism, figuring out your child’s alternative language). I was confused, so I said the sentence back to him, “The word bubbles are all done?”

OK, now he was pissed! I couldn’t figure out what he wanted me to do and he is obviously trying to tell me something that is important to him. He raised his voice and shouted again, “THE WORD BUBBLES ARE ALL DONE!” this time he was on the verge of tears. I tried to pick him up to hold him and calm him down but that made him even angrier. Then he tried to hit me and kept saying over and over while breaking down into tears, “ALL DONE!”…”ALL DONE!”… “DONE!”… “DONE!”  His repetitive words continued for about two minutes, and it felt like an eternity. As he was yelling out, he would not let me console him and he would not calm down. The more I tried to calm him the more angry he got.  Once he stopped talking he just kicked all around screaming and crying. He just couldn’t calm himself. Finally about fifteen minutes later he let me hold him, and finally began to calm down as I hummed in his ear. For some reason whenever he will let me do this, it helps him calm down. He was breathing so hard. It broke my heart. His behavioral therapist just sat back and let me handle it. It was obvious it really shocked her. In her 5 months with Aidan, she had never seen him do anything like this before.

The reason she had never seen this before is because it hasn’t happened in over 6 months. However, it used to be almost a daily occurrence. About 3-5 times per week this would happen. Something would upset him out of nowhere, and he would become hysterical. There is no feeling worse then not being able to help your child, and every time this would happen, I could feel a part of me die inside. I knew something was bothering my baby, but could not figure out what it was or what set him off. Was he hurt in some way? It was always so obvious that something went off in his brain to cause these moments where he COULD NOT control himself. 

When I woke up this morning and looked in the mirror I saw the huge bright red scabs under my eyes and on my neck. It looked like I have an abusive husband. I had forgotten about this part of our lives. The part of this journey that has always literally left me feeling beat down and a little defeated. Just when we think we figured out what was causing his aggression or his meltdowns, BAM! It is literally right back in our face. We still have work to do.  Something is still upsetting the balance of my baby’s mind.

I have given myself a morning of coffee and self pity, but now it’s time to scrape myself out of bed and get back to work. No matter how beat down I get, I will never give up. 

Autism is treatable and reversible.

Before I was ready to admit that Aidan could have Autism, I watched a video from Autism Speaks that SCARED THE (insert expletive) OUT OF ME! It is called Autism Every Day, and it shows a day in the life of four mothers who have children with ASD. I cried out of fear during the entire video. One of the little boys reminded me so much of Aidan. He wouldn’t talk to anyone else or be with anyone else but his Mom, and he stood in one place shifting his weight from one foot to the other repetitively. Aidan would do this from time to time while watching TV. However, after I watched that video, I wanted to believe so bad that Aidan did not have Autism. Watching that video made me so depressed at the thought that this might be our life- divorce, bankruptcy, constant tantrums, and dangerous situations with no end in sight. Should I go ahead and just jump off a cliff now!? If Autism Speaks wants to push education and early intervention, they are doing a really BAD job. As a parent, you NEED hope. Hope that things CAN and WILL get better with early intervention or ANY intervention. Instead this video made me FEAR getting a diagnosis for Aidan.

Thank God for my friend that emailed me a video of J.B. Handley (the founder of Generation Rescue) describing why he felt that Autism is a misdiagnosis for mercury poisoning. WOW! Could this be true? Mercury poisoning? Kids recovering? Does this mean Autism is not forever? We can do something to truly help Aidan?

J.B. Handley, as controversial a figure as he is (and I don't agree with all of his views), was one of my stars in a very dark sky. Once I watched his interview discussing the recovery of many children using chelation, I googled his name and found the short documentary Autism Yesterday. This time I cried, but they were tears of joy. I imagined Aidan recovering just like the children in the video, and it gave me this feeling of power. All of the sudden I went from feeling completely helpless, to the Warrior Mamma who was ready to kick some ass!  That was the night I finally looked at the Jenny McCarthy book that a friend gave me, and knew I was ready to honestly look at whether or not Aidan had Autism.

Thank you J.B Handley. Thank you for shining a light on my child’s underlying health issue. I am truly grateful.

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. 

Autism in Reverse by Leeann Whiffen

The Diagnosis

After a four month wait to see the Developmental Pediatrician, we finally got a diagnosis: Autism Spectrum Disorder. Even though I had come to terms with the fact that it was Autism more than 6 months prior, it still stung like hell.

The appointment went really well. My husband and I both liked the developmental pediatrician, and felt that he truly got to see Aidan’s current skill and ability level. Before he gave us the diagnosis, I remember being so impressed that my son could now do many of the things they asked of him. He even said “hi” to the doctor as he walked into the room! We were pleasantly surprised. Aidan was doing so much better, but we still had a long list of concerns.

The doctor noticed that we had Aidan on a GFCF diet and asked if it had helped. We told him him about Aidan's sleep improvements and his increase in language within days of going on the diet. His response was, "Well, none of the diet stuff has been proven, and you will come across several people claiming to cure Autism, but ABA is the only proven therapy that allows children to lead a life indistinguishable from their peers." Of course we just smiled and said, "OK" but I knew ABA and therapy alone were not going to get Aidan to were he needed to be. We still had many concerns that I could not see ABA fully addressing. 

Below is a full list of what our concerns were at this time. The concerns with lines drawn through them show concerns that we no longer have, and the ones with asterisk are “symptoms” that have been greatly reduced (just six months later!):

1. Aidan appears to have little seizures at times. Sometimes he will stand in place and tense his entire body, clench his teeth, fits, and shake. We can’t tell if he does this because it feels good to him or if it is something he can’t control. **

2. Aidan has lost words & greetings that he once used regularly (ex: saying and waiving hello and good-bye). He has also lost skills (ex: completing puzzles, being able to draw a circle or line when asked, following basic directions)  

3. Aidan shows new anxieties/fears to once familiar things (ex: climbing ladders at the park, swinging,  walking up stairs that are “open”)  

4. Aidan is easily excitable and helps soothe himself by jumping up and down repetitively in place**

5. 99% of the time, Aidan will not respond to his name. 

6. Aidan seems out of sync with what is going on around him at times. He is in his own world when playing with certain toys or while involved in certain activities. He does not even let his Mother or Father interact with him.  

7. Some OCD behaviors- lining up toys. **

8. When he points out an object (For example, says “cat”), if you respond by saying “yes” or “you’re right!” he will continue to say “cat” until you say it back to him, “yes that’s a cat” or “cat” then he can move on.  

9. Aidan has difficulty running, and an awkward way of walking at times 

10. Hard time transitioning. Will flip out even when we are saying good bye to a stranger.  

11. Inappropriate behaviors with strangers (grabbing at stranger’s face to get attention). Tries to put his fingers/hands/feet in other people’s face **

12. Turns feet in and drags them when he walks/ runs. Seems like a drunken walk  

13. Defiant behavior (you want him to do something- he will pretty much always do the exact opposite)

14. Lethargic when out and about, tons of energy the moment we get home (won’t walk when we are out because he seems too tired)

15. Restless leg syndrome. He is jumping, kicking, and stomping constantly. He CAN’T keep his legs still 

16. Slurred and “made-up” words to ask for things at times. He can’t say words that he has said 100% clear in the past

17. Laughs at nothing.

18. Squints his eyes as if he is having trouble with his vision. Like he can’t see straight

19. Perseveration that redirecting cannot stop (repeatedly saying oops, uh-oh, so big, etc. out of context)**

20. Scripting/Echolalia- will recite lines from Blues Clues or things that my husband and I have said to him out of context

21. No interactive play

22. Unassociated, but consistent behavior or words when upset (now it’s “night” or “done”– used to be clapping & saying yeah)

23. Still not understanding or responding to simple instructions (i.e. hold-on, stay there)**

24. Thinks of timeout as a game – does not understand

25. Aggressive behavior- When Aidan  gets upset over the smallest thing, he will throw his toys, clear tables, bite us, or scratch and hit us. It is very scary and not something we have been able to control. We worry about other people’s safety around him when he gets upset.

26. Obsession with fans- wants to turn on every fan in the house and just watch it spin

27. When he gets upset he cannot be consoled

28. Significant receptive and expressive language delay

29. Has the capability to use a fork or spoon but refuses, he has to touch every piece of food before he will put it in his mouth

30. Will break down crying if certain strangers or “newer” acquaintances approach him or just say hi 

31. Extremely sensitive to certain sounds and when he hears them cannot be consoled. Not necessarily loud or soft sound but gets upset when he hears a cow, duck, or horse sound and cannot be consoled

32. Does not always play appropriately with toys. Will set up his favorite toys on play table in a specific way and then no one else can move or touch them.

Had we come up with this list before starting the diet or working with the Thoughtful House, these concerns would have been on the list as well:

-  Difficulty sleeping. Sleeps approx 5 hours per day.  (Later found out this is a sign of food allergies and/or vitamin deficiencies)

-  Puts constant pressure on his stomach (Later found this was food allergies & bacteria/yeast which caused stomach discomfort- leaky gut, etc.)

-  Spins in circles while looking out of the corner of his eye (Vitamin A deficiency and/or yeast)

- Eye stims – sometimes he would roll his eyes to the side or like he was rolling them in back of his head (later found out that this is tied to Mercury toxicity and Vitamin A deficiencies)

- Overly attached to Mom. I couldn't leave the room or do anything else with out him getting upset. Wouldn't even let Dad put him to sleep at night. EVERYTHING had to be done with Mom.

Looking at this list again makes me realize how far Aidan has come. I am so proud of him, and also proud of my husband and I for not taking "no" for an answer. We still have work to do, and I will not stop until every item on our list of concerns is gone. I look forward to the day when I can have a conversation with my son, and know that he understands just what I mean. I look forward to the day he can come home from school and tell me all about his day. I look forward to the day that I take him to the park and watch him play with other children.

Being the parent of a child on the spectrum can truly be a special thing. I find that I no longer take any of the little things for granted. For so long I took Aidan's ability for granted. I would watch him run, jump, and climb at the park and it was just what he was supposed to do. When he lost that ability, it scared the hell out of me. All I wanted was for him to do  the things that he was once able to. Every little bit of him that we get back, has been twice as special to me. I absolutely LOVE watching him at the park now. It makes me so happy to see him have the energy to run and climb, and use his words to ask me to push him on the swing. Just six months prior to this I was so scared that I would NEVER see him do these things again. 

I know that we are nowhere near the finish line, but I share this information because I want other families to know that you CAN and WILL see improvements in your child. It may take several months or years, but it is possible. 

It upsets me that there are still pediatricians that tell parents their child will never talk, never be able to make friends, and never be able to show their feelings. It makes me upset that there are pediatricians who give the Autism diagnosis and in the same breath say that the diets and alternative treatments have not been proven and are really just a waste of time.  While my son is not recovered, I have seen him go from an angry little boy trapped in his own world, to a boy who can now tell me most of his needs and wants. My husband and I have seen steady improvements since we started this journey, and we know that many of them came from treating his underlying medical issues. It has been a long year of diets, supplements and therapy, but it feels so wonderful to look at that long list of concerns and see that over half of them are GONE. 

My hope is that in another year, all of our concerns will be gone and Aidan will be able to start Kindergarten in a typical class. Both of his ABA therapists have told me that this is an attainable goal, but the school district (mostly people who think there is no "recovery" from Autism), thinks I am shooting for the moon. Watch us prove them wrong...

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. 

Specific Carbohydrate Diet

I had originally put Aidan on this diet after realizing that he had an issue with yeast, and since I couldn’t get a doctor who would prescribe an antifungal at the time, I wanted to keep it under control as best I could by natural means.

I was still VERY new to this whole world of alternative diets, Autism, and biomed. I had not really read much on the effects of phenols in certain foods. So, I read Breaking the Vicious Cycle and a week later put Aidan on the diet. I followed the introduction part of the diet to the letter. The online Yahoo Group that I joined kept stressing how important it was that you not stray from the diet. Well, when you have a kid who was formerly constipated, and you feed him nothing but carrots, chicken, turkey, applesauce, bananas or eggs,  things get worse. Since the intro diet is only to last a few days, and stage 1 should be followed for at least a month. I asked other people on the board, “should I skip ahead to some foods that will help my son have a BM? And remember, this is before I knew about Magnesium!! Every response I got said that I needed to stay the course and that this was a good sign. Hmmmm…this just doesn’t seem right to me, but I figured since they had been through it and seen such amazing results with their own children they knew what they were talking about., right? No, I was wrong big time. This was the first time we saw Aidan walk on his toes. He hadn’t gone to the bathroom in 2 days after eating a lot of food. Ahhhh! So THIS is why so many kids with Autism walk on their toes! Their little tummy hurts so bad that even just the pressure of walking hurts!

I gave Aidan an enema, and I pushed forward to another stage of the diet, where he might get more foods that would help him “go”.  I added fruits, veggies, and some almond meal muffins here and there. His bowel movements did not seem to improve, as a matter of fact they were BETTER when we were doing GFCF. However, his language started to increase again. This time he was saying words while we were out with other people (normally he would just talk to me at home. I don’t think anyone thought he could talk). While he was adding words and songs to his vocabulary, he started acting really spacey. He would shake his head around, look up at the lights, he would get really hyper and was having trouble going to sleep at night again. I didn’t know what was going on.

It wasn’t until a month later that I figured out that everything he was eating was high in phenols and Aidan has a phenol sensitivity. It would be almost impossible to keep him on this diet without phenolic foods. I had never seen this addressed on the chat board for this diet, or on the website. I was a little mad at myself for not figuring this one out sooner. I went with the crowd, and hurt my son. Why didn’t I follow my gut when I knew something didn’t seem right?

From that moment I realized that our family would be given many different avenues to explore during Aidan’s recovery, but it would be up to me to always follow my gut. My feelings about what was good or bad for Aidan have always turned out to be right. I would not follow anyone else blindly even if they did “recover” their child. Every one of these children are so different, and it is up to us as parents to figure out the safest path for our child. I promised myself I would never let Aidan down like that again.

So, when we put Aidan on the diet the second time around, I gave him mostly pureed carrot “pancakes” with egg, and very very little meat (at the suggestion of our nutritionist). When we moved to the next phase of the diet, I did not give him bananas or applesauce (because they are both constipating foods). Just these small changes made a HUGE difference. Aidan was doing wonderful on the diet.  He was having 1-2 perfect BM’s a day. He just seemed a little more connected too. I really wished I had followed my gut and removed these foods the first time around.

If you are interested in learning more about the benefits of the Specific Carbohydrate Diet,  you can read Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall and check out: 

http://www.breakingtheviciouscycle.info/