1.Gaining Some Support
I had my suspicions and the first place I needed to start was convincing my husband that there were some red flags. This was no easy task. Without jamming all my worries down his throat at the cost of possibly sounding like some neurotic over analytical mother who has too much time on her hands (and believe me I don’t) I thought it might be best to slowly start sending him articles about children who showed the same symptoms as our little Finn. I would send these in the day so he could read them and not be confronted with them and could read at his leisure. I would then casually bring these things up at night in bed when things were calm and the timing seemed right. This was a truly stressful task. I didn’t want Finn to be autistic and I certainly didn’t want to crush my husbands dreams and heart by poisoning his mind with ideas that I had no backing for But, BUT, as a mother I know my children and I knew something was wrong so we…
2. Went to our family doctor
I expressed my concerns which primarily was that our beautiful and happy two year old boy was not talking. Then this jump-started other questions, questions that I knew the answers to but had hoped coming from a different, unbiased and professional source, would prompt my husband to think about these things more deeply. She began asking… “Did he understand us? Was he communicating to us? Did he have any odd, repetitive behaviors, how was his eye contact, how was he around other people, has there been any regression, does he prefer to play on his own, does he play with toys inappropriately.” Yes, yes, yes, yes, I checked them off in my mind. My husband wasn’t fully convinced. See a full list of Autism Spectrum Disorder Symptom’s.
3. We went to get a Hearing test
Our doctor suggested we get a hearing test done first and rule that out completely as a possible issue. We knew his hearing wasn’t the problem since he would come running in across the house when he heard his songs on the tv, or if I whispered softly the itsy bitsy spider and he would laugh. We proceeded with the hearing test. We went to do the standardized screening where they give him a check-up and then go into the sound room. In this black-walled box we sat down and looked around. The audiologist’s voice came through various speakers surrounding the room. She’d whisper “Finn, look over here, Finn”, she speak louder, “Finn, can you hear me Finn”, but he was too distraught to pay any mind. He wanted out of my lap and out of this strange room. We tried to distract him with toys and blocks that I often brought when we left the house as a safety net. Playing with those calmed him down but made the test impossible because now he was not responding to anything at all since he was fixated on the toys. They flashed on the tv and he turned once and then not the next time. He scrambled to get down and started crying loudly. This wasn’t working. So they made a final attempt to check his ears but he would not allow it, he even grew the most upset we had ever seen him. We had to hold him tight to keep his head still but he would not cooperate and who could blame him. He could not understand mommy and daddy telling him where we were, who these people were, and what they were doing. He could not tell them no, or say I want out. All he could do is what he knew how to in order to communicate distress, cry. It was a horrible day. The last doctor told us he thought it was likely that Finn was Autistic based on his overreactions to these typical tests. He and a few others mentioned Early Intervention while we were there and why it had not been mentioned to us by our family doctor. This infuriated me, why had it not? I had no idea about such things as Early Intervention, a service offering assistance to “children like mine” I assumed. I called and set up an appointment.
4. Next stop ABR Sedated Auditory Test
Finn’s uncooperative behavior at Voorhees CHOP meant we had to go to the Philadelphia CHOP. This time to be sedated so they could measure his brainwaves and reactions while he was calmly put to sleep. We didn’t like this one bit, especially since we felt his hearing was good. We had to know for sure though. Finn had super strength and it took some extra sedation to get him to relax he fought them until the end. I loathed seeing his lifeless body bent over the pillow and strange nurses handling him as if he were a doll. They were actually very delicate and careful with him. It was just all my anger building for all the people, doctors, hospitals, that we were supposed to trust with our Finn and I know felt I could trust no one outside our family with him. The hearing test went very well and Finn’s hearing was, just as we thought, perfect. I had a feeling of relief but an even greater feeling of treachery shortly followed because getting these results only meant something else much worse was wrong.
So we went home and I feverishly stormed the net for 2 straight weeks. I mean non-stop, laptop, my phone, my ipad, searching and reading and watching videos, and skimming blogs, and viewing stats, and case studies until I felt that I was with every essence of the phrase “going insane”. I came across Jenny McCarthy’s videos of countless rallies against vaccinations. While her account had me somewhat skeptical it then led me to related videos, and not just 2 or 3, hundreds of videos of parents posting about biomedical treatments for their autistic children. I started to grow hope. I wanted to know how to go about getting this treatment.
What would costs be? Would insurance cover it? What type of doctor’s conducted this treatment? Was it safe? How long were treatments? What were the treatments? How close were these doctors from us? Was it legitimate?
I needed answers and when you are searching about something that is so looked over by mainstream society it is hard to find real answers to these questions without coming across dozens of articles negating it’s results. So through one of my searches I came across this site: www.biomedheals.com and it was so informative and there were so many people involved on this mother’s site who had posted not only the story, but also the videos (before and after treatment), the tests to take, vitamins, supplements and more. I grew obsessed with reading more. Circling back I then came across www.generationsrescue.org which further highlighted these same tests and steps to a recovery and then finally www.tacanow.org
I sat back, “recovery………..from autism?” Why was this the first time I was hearing of this? Why was the common accepting understand of autism only that it was a neurological disorder that could only be treated through behavioral therapy? Why was I not given a pamphlet of alternative options (ones that could actually help my son recover)? I started to think I was becoming a conspiracy theorist. The world was out to hide a very dark and dirty secret from desperate heartbroken parents so that the pharmaceutical companies and all that they are in bed with could keep their pockets full and overflowing.
5. Call around for Developmental Pediatricians
Find a few actually and call around and get yourself on some waiting lists then buckle up its a long ride waiting for this one. They gave me a 6-9 month waiting list! I received their packet after two weeks and then sent it out to wait for their call.
6. Early Intervention Meeting
So I set up an appointment with our local chapter and they came out to our house for about 2 hours. One hour to evaluate Finn and the other to review the evaluation and paperwork with us for the next steps in the process. The evaluation consisted of the two reps trying to interact with Finn. They would call his name, they would make noises, they put toys on a table for him to play with, they tried to make eye contact with him and get him to talk They observed him playing with the toys. They noted what he could do, what he couldn’t and told us the tests they would not provide because they thought it wold cause him too much anxiety.After the meeting that disclosed that Finn qualified and needed assistance in two our of four areas; Communication and Social and Emotional Development.
7. Our Biomedical Beginning
So in the interim I continued to do research on theories of possible causes for Autism. I came across amalgams and mercury positioning, gmo foods, yeast infections, genetic testing, environmental causes, soy and formulas, shots and vaccinations, jaundice,and on and on… I then started to write up an investigation of the items that I have gone through since the birth of my first son.
So I found the DAN doctor search via www.biomedheals.com website and through days of searching and even a cancelled appointment originally set up with a doctor closer to me, I settled on what I thought was the smartest choice I could have made. Dr Neubrander specializes in recovery for children with ASD. Every search I did, whether through youtube, forums, and/or articles on the topic always ended up a mention or link back to him. This guy was in the game for a long time and was seeing results. His patients submitted recovery videos and I couldn’t deny that I was for the first time excited about the possibilities. I called right away and talked to Rick, Dr. James Neubranders brother. We spoke about 35-40 mins. he answered all my questions and we even got into a bit of web development chat since that’s what I do and he said their site needed work. He was extremely helpful and even addressed my concerns about diet and my idea of trying TMG and DMG. Not to say that either of those things are the wrong route, but for us at this point starting out it was. We decided we would meet with Dr. Neubrander and do the 6 week explicit clinical trial of MB12 shots. I agreed to only change one thing 2 weeks prior and that was switching to Almond milk rather than cows milk. We even saw increase of eye contact just from that one switch! We then met the doctor… read here for our initial appointment.
8. Speech and Language Evaluation
We are 5 1/2 weeks into our 6 week clinical trial but are of course not shying away from supplementing with conventional methods. We finally got our appointment 4 months later for the Speech and Language Evaluation. For the sake of mother’s everywhere, I sincerely hope they speed this process up. It was literally killing me for months. New to all of this, being bombarded with all the contacts, paperwork and to-do’s I really thought I would die of anxiety and stress. Things have subsided a bit though. Especially following this evaluation. The specialist assured me I was doing everything right and beyond that I could be doing. So no diagnosis for us (that’s the developmental pediatricians job, yeah the one we’ll see in maybe another 6 months).
In November I called, then had to wait two weeks to get a form. I filled out the packet, the forms then take a month or so to be reviewed. Then it can take up to 6-9months for an appointment to be set. Once the packet is reviewed, they send a letter telling me when in a few months I can expect a call to make an appointment, you kidding me? I just got the letter and it reads Feb-March, what the hell kind of time-window omg I’m going to have to babysit my phone for two months, unreal….
Back to the eval… so no diagnosis they just concluded there are definitely some severe speech delays. They provided us with some tips and we’ll follow up with them in about 6 weeks. They think Finn should be getting therapy from OT and ST twice a week rather than once so they’ll be sending a letter of request. Read about our day at the CHOP Philadelphia Seashore house for FInn’s evaluation.
9. Development Pediatric Evaluation
So we met with our Developmental Pediatrician in Voorhees NJ. We got lucky and were seen 5 months early due to an cancellation. He was evaluated by Dr. Kruger and she expressed a small concern about the amount of the dosages for the supplements we were giving Finn. She said they were safe but was curious why they were so high. I sent her Finn’s test results. I knew my husband and I did not want to cut back we wanted to fight aggressively wihtin safe limits to get Finn right. She was curious about what genetic testing he had done and mentioned Fragile X neurology studies as an option, which i need to do more research on. From a range 30-60 Finn clocked in at about a 40.5. Some test he wouldn’t cooperate with but does perform at home so no score was given, therefore contributing to a higher ranking. She recommended Speech Therapy and Behavioral Therapy. We will meet up in 6 months.Read more about our visit…
9. Therapies: Occupational,Developmental, Behavioral, Speech…
Early Intervention Services set us up with one meet a week for one hour of OT and DI. We will be picking up Behavioral Therapy as suggested by Developmental Pediatrician, once evaluted this week. We will be waiting on Speech Therapy, as EI has determined Finn is not ready for Speech yet b/c he hasn’t met the prerequisites. We mus first work on the foundation, mimicking…