The Poop Update & the IEP

Well, I was hoping for a better update than what I have to offer right now - we've still got deliberate pooping in the pants going on - with occasional successes in the toilet. I picked up a bottle of "Tri Salts" on the advice of nurse Kim Hamada from Dr. Freedenfeld's office. They are supposed to help rid the body of any lingering gluten. I'm not sure if it will work or not, because I've been forgetting to add it to his juice. When I added it to his juice last week, he refused to drink it. Maybe it was too much in one cup, I don't know. I'll have to add it in smaller amounts and see what happens. So that's that...

Mike and I went to Sean's IEP last week and it went as expected. I want them to pay for private speech, and they don't want to put out an extra nickel unless forced to do so. What a crappy organization the Bucks County Intermediate Unit is! I'm not talking about the teachers and the therapists, but the organization itself. Their only objective is to give your child the basics, and nothing more! How do we get these kids functioning at a higher level with this kind of mediocre system in place? I know they are swamped with all the kids flooding into the system, but that's still not a good enough excuse for screwing all our kids. For instance, Sean has been receiving "small group" speech therapy for 2 going on 3 years now. Guess how much progress he's made in that kind of a setting? That's right - none. Since treating Sean with iv glutathione and chelation, he has finally begun making more sounds and has shown the ability to begin linking these sounds together in order to make words, thanks to Jennifer over at Yarley Speech & Language. I'm talking simple words like, "bat", and "daddy", and nice approximations for things like "my turn", "turtle", "that one", colors, numbers, and can even carry a tune, though you can't understand what the heck he's singing. I need Jennifer to see Sean for a few more weeks so she can write a really in depth, meaningful report about him so that I can call another IEP meeting and present to them her findings and diagnosis. Hopefully it will be enough, but I don't know. Families like ours are stressed out enough and then we have to deal with this kind of bullshit on top of it. Kinda makes you wonder if anybody BUT you really cares about your kid. Information about meaningful services is never freely given, but always a struggle to obtain.

Tomorrow we have our weekly chelation appointment. I always look forward to seeing all the great people that work in that office and treat Sean. It's a good thing to know that you're helping to remove filth from your child's body. I hope that in time, we will really start to see some promising results. It seems like we're always waiting on things - test results, changes in behaviors, meetings, dr. appts., etc.
I prayed for the virtue of patience and God gave me Sean - go figure. But for the record, I'm still working on it. I'm a LONG way from having "mastered" that skill!

Finding the Pieces of the Puzzle

Okay, so we were having smooth sailing (as smooth as it can be on the Sea of Autism) for about a month - we were having success with chelation, Sean was making strides - such as becoming fully potty trained. For parents with an autistic child, we all know what a HUMONGOUS deal this is! It's a huge milestone. I almost threw out the leftover Pull Ups, but decided not to just yet. Well, thank God for intuition because little did I know that just a few short weeks later, Sean would be back in them. Sigh...
I guess the most distressing part about it is that we don't know WHY Sean has reverted back to crapping in his pants. But I'm finding it very hard to deal with. It's a big loss, but hopefully one that can be overcome. We added casein back into his diet about the same time this toilet regression hit. Unfortunately, I also inadvertantly had added gluten back into Sean's diet as well. I saw "Wheat Free" on a package, and for some reason, for a couple of weeks, that translated in my brain as being "Gluten Free". I know, I know, there are other sources of gluten besides wheat. I've been doing this damn diet for a year now and should have been able to easily avoid such a stupid and careless mistake. So is the gluten infraction what caused the pooping in the pants? Or the casein? Hmmm....
Can't answer that yet since Sean hasn't pooped for 2 days. Stay tuned for an update.

He's Immune!!

I've been having a fair amount of anxiety regarding taking Sean to his 5 year check up at the pediatrician's office. They want to shoot him up with his boosters, despite the fact that he has ASD. Thankfully, I had his titers tested over at Dr. Freedenfeld's office and he's immune to measles, mumps, rubella, polio & varicella. So they can kiss my ass when they try to inject my boy with more shots that he doesn't need!
I am so happy that I can go into that appointment with the proof in my hands that we are over-vaccinating our children. Why can't we check all our children's titers before administering booster shots? It just doesn't make any sense the way we're immunizing in this country!

"Your Son Is Capable of Having Functional Speech"

That is exactly what Sean's new speech therapist told me at his evaluation last Monday. She comes highly recommended. Nobody has ever offered our family that kind of hope before. She works with a family member of mine, and with another little boy on the spectrum who lives on our street.We're just getting started down this road (speech therapy), but I'm hoping we have a smooth ride with only a few bumps. But like my grandmother would say, "Don't expect anything and you won't be disappointed". Not that I'm expecting nothing, that wouldn't be true, but we are careful not to expect too much. Watching how hard Sean was working during those sessions to make certain sounds, and to say what he was being asked to say - remember now that he's basically non-verbal - made me very emotional. I had to blink back some tears! My boy is so determined! I love his spirit. He's an amazing child. And as his parents, Mike and I can only return that determination in helping him recover - to the best of his ability. Kids recover from autism every day. Maybe someday that will be our boy too. But if not, we still love him the same as we always have, knowing that we really did try to the best of our ability to give him as many skills as possible for a more normal life.

"When is Sean Gonna Be Done with Autism?"

That's what my 6 year old daughter Emily asked me the other day. I think she is finally getting to the age where she's becoming frustrated with Sean's lack of communication & social skills and just wants to have her younger brother to play with. I was wishing I could answer her with a , "Next week honey, we'll get all the autism out and Sean will be healthy again." But instead I answered her with an "I don't know baby, I wish I had the answer to that, but I don't." Our children know that we are chelating Sean to remove lead and other neurotoxic metals from his brain, bones, organs and other soft tissues. They see the amount of supplements he has to drink in his juice and that he needs help with things that they can do with ease. We're very proud of Sean's accomplishments and how much he has overcome up to this point. The kids know their brother has a disability and they look out for him - even Annie, his 3 year old sister looks out for her big brother. If the front door has been mistakenly left unlocked and Sean goes out, Annie comes and gets me right away. We are so lucky our kids understand that we all have a role to play concerning Sean's safety and well-being.
For a couple of weeks there, Sean was completely potty trained and it was absolutely wonderful. Since last week, when we added casein and egg whites back into his diet, he has begun doing # 2's in his underwear. I just can't go back to that. It's too mentally draining. He's also been super spaced out since last week too. We'll give it to the end of this week, if he doesn't improve, then we'll remove the casein and egg white again. Keeping our fingers crossed that he can stay in underwear. Especially since I just bought him really cool, comfortable cotton boxers! I've never seen the impact of diet in our son this way. It's very interesting to see the differences (regression) in him.

Some Background on Sean

Ok, so here's our journey so far in a nutshell for anyone who's reading this blog and obviously somewhat interested. Sean was born perfectly healthy, we had no problems until his 2nd HepB vax. Sean became chronically congested from that point on. At only 8 weeks of age he received his first full round of immunizations: Prevnar, Hib, DTaP, and IPV. Looking back, I believe this is when Sean began to sink into the pit that is autism.
So after 18 months of chronic ear infections, no eye contact, no receptive or expressive language, no development of any social skills whatsoever, except for the tv, Sean had a love affair with the tv, we began to come out of our fog of denial.
We were referred to a neurodevelopmental pediatrician who gave us a PDD-NOS diagnosis, but nothing else. No help or hope of any kind. We left feeling pretty defeated that day. I think we did what most parents do - we started researching autism therapies online and looked into biomedical kind of skeptically. I thought it sounded like a load of crap and really wasn't interested in it at the time. So after a year of home therapy and then a year of autistic support preschool, and hardly any progress, we were getting desperate. This was around the same time Jenny McCarthy's book came out and she appeared on Oprah to talk about the biomedical approach and how it helped rescue her son from autism. I watched the entire show and couldn't buy her book fast enough. I immediately searched for a DAN! doctor in my area and made an appt. pronto. He was a homeopath and should never have been listed on the DAN! list but whatever, live and learn, right? We only stayed with him 6 months. He got Sean going on supplements and got him off gluten, which he's allergic to. We saw some progress, but it got to the point where we were telling him what we needed to do next in terms of treatments.
We went to the DAN! Conference in Cherry Hill, NJ this past April and were referred to Dr.Stu Freedenfeld, who treats autistic children. Our chief complaint when we first met with Dr. Freedenfeld was that Sean couldn't wear underwear because his diarrhea was so bad it leaked out of his Pull Up and down his legs.
Within 2 weeks from that first appointment, Sean was pooping out solid bm's. We were so excited! After some expensive pee tests, we found out Sean has way too much lead in his system so to get it out, we began using glutathione iv pushes once a week. Once we worked our way up to the max dose, we started with CA-EDTA chelation. Sean potty trained within a few days after starting that. Coincidence? I think not!
Don't get me wrong, we have a long road to travel, but we're in the right hands. We have a doctor who knows what he's going and has a fabulous reputation in the autism community. I don't know if we'll ever get Sean back to where he would have been before the autism set in, but I do know that as his parents, we're obligated to try to get him as close as we can to his fullest potential.
There are so many idiotic parents out there who call autism a blessing. How stupid is that? I'm sure their kids would agree that it's a blessing not fitting in at school, it's a blessing having the shits or being constipated every day, it's a blessing being so frustrated over not being able to communicate that these kids often injure themselves, or others, in desperation. Autism is a thief that steals children away from their families. And we're trying to find our little guy...

Latest Doctor Appointment

Okay, so we had an appointment on Tuesday, Sept. 2nd with Kim and Dr. Freedenfeld (he's over in Stockton, NJ and I highly recommend him) and it went fine. We're back on some supplements we had previously stopped giving Sean for a while - he really starts to stink. All the garbage that's in him starts coming out of his pores and his breath. Kind of gross. We're going to continue with the CA-EDTA chelation. It's pulling the lead, and that's a good thing. While giving Sean and his 3 year old sister Annie a bath tonight, I noticed that for the first time, Sean is really annoyed at his sister having any tub toys. He kept taking them off her. And it wasn't that he even wanted to play with the stuff, he just didn't want her to have any fun! If that's not typical 4 year old behavior, then I don't know what is!