Madore Family's Autism Resource Site 

FIGHTING FOR ANDREW

 
Andrew Spring of 1999 before 12 & 15 month shots,                       Fall of 1999                       Christmas 2001 

The reason for sharing our story is to help find a link or cause that other people may have experienced, which may lead to a helping our children. 
We can learn so much from each other about treatments and techniques.

In talking with other parents of autistic children we found
some things in common.

Our children had a lot of ear infections, took antibiotics for an illness (ear infections, viruses), mother may have had a hard pregnancy, mother may have had to take prescription for nausea during pregnancy or a shot during labor, their child seemed fine the first year or so but then started to withdraw, and there are some auto-immune problems or depression in genes of mother's or father's family. A lot of these children (actually most), received vaccines with mercury (even the flu shot still has mercury in it), and showed regression over time and sometimes with the MMR vaccine. Some families did not see a reaction with vaccines but there was an association with a sickness. Basically, there has been an insult to the immune system which causes damage in various places like the neurological system and/or digestive system.We could probably add a lot more similarities, but does this really tell us something? 
I now understand that my son was "normal" until his MMR. His level of measles and rubella in his body were at current infection levels years after his MMR--in fact they have been this high since his last MMR vaccine at 12 months old and now he is nine.

My husband is a firefighter and I am an ex-high school computer teacher. I now am an Instruction Coordinator (I go into classrooms and give suggestions to teachers, provide professional development to teachers and staff, and work on preparing the school's teachers and students for TAKS, SDAA and other testing). We have a daughter that is 10 years old and she is not autistic but does have a mild case of pulmonary valve stinosis and a murmur. Andrew was a good baby. He was 9lbs 7oz. I had to deliver C-section because he was breech and he was overdue. His sister (17 months older) was an easy pregnancy, fast natural delivery (5 hours), and I felt great afterwards. When I was pregnant with Andrew I had morning sickness. My body has not been the same since Andrew. My C-section incision became infected and I was very sick for a few weeks. I eventually was diagnosed with psoriatic arthritis (positive ANA blood test too), and put on Paxil to help with a "sadness" that had set in after Andrew's diagnosis--my doctor said it was post-traumatic stress syndrome. I had been tested for immune problems before having children because I did not want to pass on problems, but everything tested fine. My mom died of Lupus complications and I knew Lupus could be hereditary. My sister's beautiful daughter, who is now 18, has had many auto-immune problems (juvenile diabetes, pernicious anemia, hypothyroidism, & epilepsy{not considered autoimmune?})--some set in after 12 months and the others after kinder vaccines. Only my mother and my niece had ever shown these types of problems so I thought I might be safe because there was no connection at that time. My daughter does not have any of these medical conditions at this time and my psoriatic arthritis, joint pain, and psoriasis had been very manageable. Now in 2007 I am receiving Remicade infusions every 4-6 weeks, methotrexate and other meds to knock down my immune system. I had a Lupus diagnosis from Dr. Birch along with a warning "I had a patient with your ANA & sed rate numbers and she was dead within a year from stress. If you don't control your stress, that could be you." Hummmm, he didn't even know I had a son with autism. I did change doctors and have a positive rheumetologist that is helping me. I unfortunately now have spinal/cervical stenosis and a bone spur on my neck that causes pain. It seems I have had a severe vitamin D deficiency that interfered with calcium absorption. But, I am alive and am thankful for everyday. I learned that from Andrew.

When Andrew was a year old (summer of 1999), my in-laws came to visit. He was so sweet during those 3 weeks. He let them hold him, play with him, and love on him. He had a few words and was very happy and playful (mama, dada, baba, hello, bye-bye). He was "normal" then. Somewhere after that we started to lose him. He did have immunizations during this time. He was sick a lot and ended up the hospital on October 31, 1999 (about 6 weeks after his last set of shots), with pneumonia and what seemed to be an asthma attack, low pulse oxygen level, difficulty breathing, and very lethargic; he was exactly 17 months old. He was in the ICU because of his blood oxygen level and his trouble breathing. I know this makes me sound like a bad parent and that I should have been able to catch these things in time, but I am hoping others will understand. We had him at the doctors every 1-2 weeks after his immunizations just 6 weeks before because we were concerned about his congestion & lethargy. The pediatrician kept saying he was fine, just a virus going around and maybe he had allergies. We took him to the ER when his breathing seemed to get worse (had just been in to the doctor's office but they said he was okay). I felt there was something going very wrong. I am not sure when we started truly losing Andrew, but can reflect back and know that he gone during our hospital stay. He was no longer letting people hold him or touch him and he was withdrawn. When my in-laws saw him one year after their visit they could not believe that he was the same child. It was just a few more months before we would know the answer.....AUTISM. That was the most devastating day of my life, and only the first day in a long process of mourning. Mourning for what might have been. Mourning for what he could have achieved. Mourning for the happiness that he may never feel. Will he ever fall in love? Will he be able to drive, care for himself, have friends; will he ever be whole? What sadness we have felt from that moment on. There are nights when I still cry and hope that I will wake up from this nightmare and he will be that happy child that he once was. To wake up and not know what a horror autism truly is. (I wrote this last part over 5 years ago but I wanted to keep it here because I truly felt that way at the time).

We knew something was wrong when he stopped talking at a little over 12 months. We started to notice he would not play with other children (would go off on his own). He used to love being held and loved playing with his sister but that stopped too. His eye contact was okay but a little inconsistent. He wasn't answering to his name (had his hearing tested) and he was becoming more combative (he had been such a sweet and happy child).

We changed doctors and got a great Pediatrician. She monitored Andrew for a couple of months to get to know him and then she recommended an Early Intervention Program in our area (ECI-Brighton School). It was a long process. Andrew did not actually get to see an Occupational Therapist for 4 months, but at her first visit she referred him to a developmental pediatrician. That took another 3 months for insurance and then waiting to clear with the doctor's hectic schedule. Andrew did not even look up when the developmental pediatrician entered the testing room (he wasn't paying attention to others anymore). I told her we were worried about his delays (especially the speech-he had no words-he had lost the few he had). Our daycare person had told us she thought he was autistic (of course we were very upset and disagreed with her). Andrew was not very cooperative during the appointment. Could he match things, sort things, point to things? No, no, no.
The result was a diagnosis of regressive autism.

I was devastated. My husband had just left for a month to go to Hazardous Materials School. I was alone and had to stay strong for Andrew and his sister. I got on the Internet and looked up the Autism Society and read what the ECI program gave me. The books they gave me to read told me about how the brain had been damaged, theories of why it happened, and how his life would never be normal. The literature all implied that Andrew would grow up to live in an institution, a "home", or with us because he could never care for himself. His speech therapist agreed with that prognosis for Andrew. Thank goodness I did not accept those answers and that I continued to reach out to others who had been through this before.

There are so many other place now to get help, but back then there was almost nothing. One of the places I called, Busy Bodies, (they do therapy that involves body movements along with speech and behavior therapy), invited me to an informal support group where parents could talk and the kids could play in the gym. They first told me to stop reading all of those books and to read hopeful ones. I saw all of their children were talking; a different singsong type talk. I met some wonderful people that night that gave me hope even though I had a hard time not crying through the whole event.

Now we are working hard in therapy and trying to appreciate what we have. I know things could be a lot worse. We don't know what the future holds and the odds are against us.
Some days are hard. I am now back at work in a more stressful job as a campus instructional coordinator. The pay is better and I get to work with instruction and improving curriculum and the hours are flexible since the only time I am in a classroom is to observe a teacher and offer suggestions and such. Since the pay is better, we were able to afford private school and therapy. They both attended Harvest Fellowship in San Antonio. Andrew was in a Pre-K class and Kristen was in Kindergarten. We paid for Andrew to have a constant shadow (one of his therapists). He was actually ahead with academics but his language and social skills were still delayed. The shadow helped in these areas but they tried to hang back and intervene only when needed. Since I am back at work, managing a family and Andrew's autism can be overwhelming. I am glad I took a year off so that we could increase his therapy and I worked with him more. It was a hard year but we saw improvements. Overall, we just try to appreciate the small things, like the first day Andrew said "Mama" and gave me a hug or the first time he said -"love you."
Those are most precious and we savor each one.

I am trying to view the hard days as challenges. One of the challenges used to be taking him out in public. We did this to expose him to other people and to acclimate him to other sounds, lights, and smells. Our consultant advised us to do this. We were in no way embarrassed by the scenes we sometimes created, but we do feel protective of Andrew and didn't appreciate the comments or looks that we sometimes get. I created a business card that explains Andrew's condition and why he may appear different and I ask them to be sensitive to those less fortunate than they are. I got this idea from another family and have since enjoyed reading other family's cards. I can feel like I am educating another person about Autism. Hopefully they will not be so judgmental towards other children and will begin to appreciate what they have and maybe even help educate others.

Sensitivity Card:
_________________________________________________

MY CHILD IS AUTISTIC.
Autism is a pervasive neurological disorder that impairs language development, communication and social interaction. It is more prevalent than multiple sclerosis, cerebral palsy or Down syndrome. New estimates show that up to 1 in every 166 people will be affected. Autism will affect 22 new babies born today and every day in the US.
Part of his treatment and therapy is to bring him out in public and expose him to things that he is sensitive to like sounds, lights, & activities. Please be sensitive to our situation. This is a very debilitating disorder that we struggle with every minute of every day. Thank you
__________________________________________________

If you know of a family that deals with autism/pdd, please learn as much as you can and ask them how you can help. Good Luck to all of the families out there who are struggling.
I will keep you in my thoughts and prayers.

WHAT WE ARE TRYING FOR ANDREW RIGHT NOW - remember we have tried A LOT of things - We have tried about everything from Kirkmans and a few different products-but this is what we have stayed with:

1.Customized Home Program with Applied Verbal Behavior mixed in. This started out as an ABA program and then grew from there as he progressed.  ABA helped give him his start.  He was non-verbal and could not even sit well in a chair before we began ABA.  We especially like the "compliance training" technique from AVB with blocks/beans.  It has really helped with my son's behavior. We also include a lot of play therapy that is AVB based with a touch of FloorTime.
2. Some sensory integration.
3. Speech therapy.
4. Occupational therapy.
5. Enzymes from http://www.houstonni.com .
6. Customized diet based on his 150 food/chemical blood test.  He tested reactive to 40 foods and caffine (the only chemical he had a reaction to).  His main reactions were:  milk, soy, beef, pork, rice, pears, cherries, bananas, blueberries, and yeast.  Soy is in most everything as vegetable oil or partially hydrogenated soybean oil.  Boy is this hard to avoid.  We are also trying to avoid high phenol foods.
7. Private school with a shadow (pre-K). We started with a public school PPCD unit that went inclusive with the pre-K 30 minutes to 2 hours out of the 3 hour day. Our goal was for him to gain more social skills, play with other kids, and have more contact with other adults in authority. It was not a good experience and of course I could write a book just on that - some of you know what I am talking about. There is an autism unit that he could have gone into, but he had progressed past the kids that are in that unit. If we had not been doing ABA/AVB, he would have fit right in there.
8. Epsom Salt Baths - has worked well when 2 cups are added to his bathwater.  He now falls asleep better and is more calm.
9. Kirkman's Hypo Spectrum Complete. We try to eat things that have a lot of natural vitamins and minerals including enriched items with calcium.
10. Diflucan for yeast overgrowth for 30 days and then added probiotics for a short while.
11. AIT-Auditory Integration Therapy.  Helped with hearing sensitivities and clarity. We now do The Listening Program CDs at home 15 minutes twice a day for 5 days a week - we saw very good improvements with that.
12. We are seeing Dr. Melissa Kempf-DAN & PCP& we have consulted with Dr. Jaqueline McCandless, Dr. Tomasovic-Neurologist, Dr. Ibarguen-Pediatric Gastroenterologist, Dr. Liu-Pediatrician/Internist.
13. Miralax or prunes occasionally for keep his gut clear.
14. Paxil for calmness-his anxiety has increased as he has gotten older.
15. Neurodevelopment approach with deep & light massage, digit spans, pinhole glasses, smells, hot/cold compresses, oral motor exercises.
16. Reducing possible allergens in the home.
17. Repligen Secretin - we participated in the phase three clinical trials that consisted of 6 injections - 21 days apart. We saw improvements in socialization which may have lead to improvements in other areas but we saw a BIG increase in defiant behavior, tantrums, and hyperactivity. We will not continue the secretin but we did see improvements I mentioned. We are now in the 2nd phase of this study where he is receiving an infusion every 3 weeks.
18. We did TTFD, Methyl B12 injections (we still do these 1-2 times a month), and TD GSH.
19. Neurofeedback with Linda Kirk's Office in Austin Texas--they have trained us to do this at home with our laptop and ThoughtTechnology equipment.
20. DMPS-transdermal following Buttar's protocol for chelation.
21. TD DMSA and TD Glut from Lee Sibly's Rx.
22. TD Secretin from Lee Sibly's Rx.
23. Lipo Glut from Wellness.
24. 40+ sessions of HBOT-hyperbaric oxygen therapy in San Antonio at SA HyperBarics.
25. Recreational therapy.
26. Hippotherapy.
27. Massage therapy.
28. Aquatic therapy.
29. Earobics, Fastforward, & reading programs.
30. LDN/Naltrexone emu based transdermal.
31. All the DAN recommended supplements that come in and out.
32. Zyprexa--causes weight gain and hunger--mixed feelings on this one.

WHAT WE TRIED & DIDN'T WORK FOR US:

1. The GF part of the GFCF diet. Andrew had a bad reaction to this diet. I think it is because he is allergic to something that we were giving him during that time. I encourage everyone that may have a child with bowel problems (diarrhea, constipation, vomiting) to try this diet but to also eliminate soy and phenols and judge the difference. It is very hard to do, but many children have gotten much better when on the diet. There are also enzymes that you can give your child when they are eating if the diet is not for you. 
2. DMG and TMG-it gave him a fever the 2 times we tried it. We discovered that Andrew's Homocystiene levels were very-they are often high in kids with autism. DMG and TMG break down Homocystiene which was bad for Andrew since he was already low. There are theories that giving your child some of these things can actually be harmful if the "gut" is not healed. It is better to heal the gut and take things that help that process. There are also issues of sulfur needs and chelation for heavy metals. We need to find out what medical/biological problems Andrew has and then deal with them. Initially his pyruvate kinase, rbc test came back as "DETECTED" and that may mean his liver is not flushing out his system correctly and that he may have metals in his blood. It has been suggested by others that this is mercury from Thimerosal in some of his vaccinations. Imagine giving a newborn baby vaccinations when only hours old (some of these shots have mercury in them) and then added more mercury every few months for the first 18 months of his life. When he gets his MMR cocktail at 12 months, his intestines/gut are already overwhelmed (milk added to diet, mercury from vaccines, antibiotics used for ear infections, etc..). Don't forget the big vaccination at 15-18 months-DPT with mercury (please ask for Thimerosal-free vaccines and have the doctor separate the MMR-).
3.We did Depakote sprinkles for the spikes on his EEG and saw some initial progress but then it leveled off and we weaned him off without any changes. We also tried Trileptal but it gave him a rash. So, the Depakote did help while we were on it but when we stopped seeing benefits, we decided to spare his liver and discontinue.

The Madore's at the Guadalupe River in the Texas Hill Country.

Christmas 2001

Below are two experiences.  I saw the first published in our local paper and it seemed so true. I think it really strikes a chord with parents of disabled children and of dreams shattered.  
The second hits closer to home for me and probably for most of us.  It was posted on an e-group.

1
WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to
help people who have not shared that unique experience to understand it, to imagine
how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans. The Coliseum. The
Michelangelo David. The gondolas in Venice. You may learn some handy phrases in
Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off
you go. Several hours later, the plane lands. The stewardess comes in and says,
"Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed
to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you
must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place,
full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after
you've been there for a while and you catch your breath, you look around.... and you
begin to notice that Holland has windmills....and Holland has tulips. Holland even has
Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging
about what a wonderful time they had there. And for the rest of your life, you will say
"Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that
dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never
be free to enjoy the very special, the very lovely things ..... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

2

 WELCOME TO BEIRUT 
by Susan F. Rzucidlo 
(Beginner's Guide to Autism) 

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.." 

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities. 

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze. 

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed. There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

 And yet, hope springs eternal. 

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place. 

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life is never normal again, but hey, what fun is normal

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