A Slow Progress

The way Biomedical Intervention works for Autism Recovery is, that you find a good reputable Dan Doctor who are doctors versed in the Biomedical aspect of Autism, looking at things outside of the box from conventional western medicine; well versed and educated beyond the norm, tailored toward children on the spectrum.

Then, they give a plethora of tests, blood, etc in order to get a 'picture', an idea of what specifically that childs needs as per their testing. (We can only afford to do ONE test here, another there, extremely crawling snail-like toward getting that 'picture' thats needed in order to fully get on the full treatment plan)....

Once ALL of the tests are completed you get an idea of what specific treatments, further testing, etc., that particular child needs; we cannot afford that.....so we are trying to raise the funds in order to get full testing and treatment for Justin...

There is so much out there from experts and parents who've tried the protocol that convinces me, this is something that gives hope to children like Justin.

It's Autism Recovery videos like the one below that gives parents like me hope; filled with medical experts who back the information up.

http://www.youtube.com/watch?v=tsjx0Lo05z4

Donations

(Updated)
We've set up a Benefit Account at Amcore Bank titled "Justin's Recovery Wish". Donations can be made to any Amcore Bank location by giving them the name, "Justin's Recovery Wish" and telling them that you wish to donate. You can also mail your monetary gift to:
Amcore Bank
"Justin's Recovery Wish"
2705 N. Mulford Road
Rockford, Illinois 61114

Or you can click on the left paypal donation button to the left for a secured donation.

We love our child unconditionally and are doing this to better
his world, heal his system. His inability to communicate, GI &
Feeding Issues along with all the damage to his nervous system
brings him much suffering and anxiety. We are responsible,
pro-active parents staying on top of the research and parental
experiences of Autism Recovery. God bless you and thank you
for any contribution and prayers.

[update] August 2nd, 2009 at 3:PM
Thank you to all who prayed for Justin for healing today. We appreciate all
your support & prayers. We look forward to seeing more improvements in
Justin in the form of blessings.

Whatever you ask for in Prayer with faith you will receive.
Matthew 21:22

"JUSTIN'S POEM"

"Justin's Poem"
By Miriam (Mom)

As I look into your eyes, I see you are the same
adorable angelic boy, Justin is your name....
You came into the world, as perfect as can be;
then somewhere along the line, your health taken from me
I can't say where or when with 100% certainty-
But I know you were born perfect, no flaws that we could see

Now your deep inside yourself, in your little world
looking sometimes into what? others times at things that twirl
Mommy & Daddy are working on it Justin, don't you worry son
For Sierra too will soon get to know her brother when we're done

We'll recover you from Autism, we'll pull you to our world
Only then can you tell us of your journey; Only then will your life, unfurl.
So here's to working together; here's to miracles & love
May the power of God heal you Justin, may he guide us from above

Please help us if your able, pray for him nevertheless....
We appreciate all the strangers, who'll help us though this mess
May the God of heaven bless you, May Jesus know your name
When we are all in heaven and are healthy just the same.

5/30/09 11:pm

Justin's Autism Fund Video

Justin "During" Recovery Process

{New} 10/11/09

We've gone 10 steps backward in our efforts. Justin was doing so great on the GF Diet, his focus was great, his speech was improving; except for the part where his sensory issues wouldn't allow him the freedom to try other foods except GF Chicken Nuggets for over a month and a half, (literally all he would eat!). It's frustrating because his sensory integration disorder is such that I've been told by his therapist, any food group personnel that he is one tough nut to crack! All tricks, methods they've suggested in order to get him to eat other things just don't work; he had something called S.O.S. Feeding therapy; when I started all of those therapies they all thought Justin would be eating in no time; Justin proved them wrong. Well, I offered any/all foods allowed on the diet even wasted a lot of food letting him play with it with hopes that he'd eventually want to eat more than just the GF Chicken nuggets.....nope! Not my kid. He got to the point where he either got tired of eating just Chicken Nuggets or developed an allergic reaction to something in the Chicken Nugget breading; he had chronic diarrhea and just plane stopped eating and started losing weight; I had been told that he was a cough or sneeze away from being G-tube fed if we didn't do something; I immediately just offered the only thing he'd eat before the diet, all sugar, all wheat foods that were not the healthiest but it's what he'd eat. Almost immediately his focus was off and he is now back to constipated. From one extreme to the other; I feel like we were climbing a 9 foot ladder and were knock off it to the bottom. Back to square one. I've had him tested for certain food allergies, celiac disease via blood test and they want to do some invasive G.I. testing; but before I even consider those again, (yes, he's had horrible invasive testing before with all of his G.I. problems); I'm going to have him tested for a more sensitive food allergy test. We'll see where this all takes us in our efforts.

9/1/09
FINALLY! We've now gotten Justin on the GFCF Diet that is talked about so much for Autistic Children and others. I must say, in 5 years this little boy has never had a normal Bowel Movement without the aide of stool softeners, etc., and after one week on the diet Justin is going 2-3 times a day! This is an improvement for him. He would go through such anxiety, discomfort & meltdowns for what we would consider such a natural act; I must say, I'm quite impressed. Now, his system will usually react to a change then seem to have 'shut down'. I hope that doesn't happen. But so far so good thank God. I'll keep posting updates. We are currently making some changes to his Biomedical regimen. I'll post some more video footage soon.

8/19/09
Justin's system returned to being 'stubborn' again; whenever we believe to have found a solution to his G.I. problems; his system resorts back to what it was doing before; the temporary relief seems to shut down and return back to HIS normal, which is not normal at all. So with respect to his G.I. problems, we are back to square A..we will keep trying and update progress

As far as his speech, we've seem some good suddle changes; he is trying to use more 2-3 words as opposed to the beginning or end-sound of one word; again, annunciation still needs work, but we are seeing some suddle changes for the better.

7/26/09
We have seen some suddle changes in Justin. I have to be honest, my standards are high so I promise not to give credit where nothing is happening. Some of the changes I've seen: he is 'aware' of his 16 month old sister. He used to ignore her which was heartbreaking, because when she would see him in the morning she had this huge grin for him and he wouldn't return it, he'd ignore her. Although now we still have to cue him to bid her 'good morning' he for example see's her and will go over to her and smile; the sad part of it is that my daughter is now in a 'biting' phase and has discovered the power of her teeth. So poor Justin willingly gave her his arm the other day and where I thought she was going to hug him the little vampire took a bite of my poor Justin! Justin's reaction was the most heartbreaking, where I'm sure he felt pain, he looked at me with the most 'sad' look as if to say, "why did she do that?"....the more difficult aspect of it is that I cannot 'explain' to Justin that she does not know any better because neither does he....he doesn't understand 100% of what's being said to him either. It's so hard.

Another thing that we've seen is he seems to try to sing more; although annunciation is still not there; he hums out most of it; nevertheless, more musical. Aside from some minor experimentation with sound, that's about all I have to report right now. I just had a neurotransmitter test for him along with a Vit. D level and am waiting for the results for new
instruction. We've just started in the beginning of June with some supplements and in the middle with the B12.

My main aim throughout all we are doing is to fix his GI problems and atleast improve his speech, if by a miracle something more comes, (recovery); I welcome it, but that is the extent of my expectation and aim at this point in time. I continue to read up on the research and parental experiences and will be documenting and sharing anything that we witness during this journey.
We thank you all for your support and prayers and look forward to Justin getting better.

Justin's Diagnosis & Eating Habits

When Justin was born I was told he was a healthy baby boy. Apgars were 9/9, he was so cute, still is......but now he is not a 'healthy baby boy'. Somewhere, somehow, something went wrong. Now I get tiny windows of my boy and a whole lot of him somewhat inside of himself. All I know is that my son started developing fine, he started the Mama, Dada, Gaga then suddenly stopped. He started drooling....all the time. Even at over a year old he was still drooling, needed a bib at all times. When I'd ask his pediatrician she just said it might've been the teething, because Justin was a late teether. Nevertheless, my son was developing normal up until between 8 mos. & a year he started to change. I am at times angry, sad, frustrated because there are just a lot more questions than answers. All I know is that I have to try and make this a successful fundraising attempt in order to get my son the treatment that could potentially recover him. So here I am, spilling my guts out to many strangers, hoping for a miracle; that God by some miracle will grant us this wish. So we can only ask and see what happens.

When Justin was younger and we were transitioning to solids it was so difficult. During that time I had no idea that he was autistic. I believed there were certain things here and there that just didn't seem right, but as a parent, you never want to believe there is anything seriously wrong with your child and I'd mention little things of concern to his pediatrician, family members, friends, and I'd get the ole' I'm sure it's nothing....kids develop differently, he's fine.

I noticed he was extremely picky, irritable more than other children and didn't quite play well with toys, ok, who am I kidding, he didn't play appropriately with toys. He was absolutely attached to mommy, still is....

When he was diagnosed, it was like the biggest fist ever, punched me right in the stomach. I cannot express enough the heartache to hear your child has a permanent illness that you cannot wipe away or cure with any regimen. I cried at home, I blamed myself, 'what did I do, what did I eat when he was in my belly, the stress maybe?.....there isn't enough room on this blog for how much I beat myself up inside......I was angry, I was sad, I was depressed, I wanted to know how....and .......no answers. It's a mystery??? Yet more and more children were becoming autistic and more and more questions left unanswered.

Why I even had a medical professional say to me quickly after my first diagnosis when I was numb at what I had just heard, "and don't bother with the alternative things out there that promise cures, there is just no scientific proof"......not only did I leave that office with a devastating diagnosis for my baby, but my hope, ..... before it even entering my heart, was stolen at the moment she said that little bit of information, my hope was taken away......

That was before I know-- what I know now. I was not given the answers to my satisfaction of all the questions that I had, so from the moment that I found out that my son was Autistic onward, I became pro-active and began reading about all things Autistic. I'm still learning today. But I've read enough to have found HOPE. Hope in Biomedical and Hyperbaric Oxygen Treatments. I've been educating myself, surrounding myself with both parents of autistic children who have and haven't tried these alternative treatments, I've spoken with Doctors and other medical professionals who believe in the treatment and I'm going to try them if it's the last thing I do! My boy may not be able to talk, but he has a mommy that will talk enough for the both of us and stand up for his right, his right to be recovered from this horrible disorder, I don't even know what to call it, I've referred to it as a disease......all I know is that my beautiful little boy is somewhere in there and I'm determined to bring him out.

He only eats the same thing day in and day out, not because I am a bad parent and wish for him to eat these things, that is all he will eat. It is part of his Sensory Integration Disorder. He has such an aversion to new foods, he gags. We've tried different feeding groups, different suggestions from just about anyone, nothing works. I am really desperate to get him on the Gluten Free and Casein Free Diet (GFCF), but I don't see how. Every day Justin eats the same thing, for breakfast, Apple Jacks Cereal with no milk, dry. For lunch either Burger King Chicken Nuggets (only type he will eat and trust me, you cannot trick him), or the other which I limit because of his constipation problems, TGIF Moz. Cheese Sticks, the only snacks he will have is Doritos or Cheetos and those he really doesn't eat much anymore. I feel so bad because sometimes he is tired of eating the same thing and will only ask for say, ......apple jacks the whole day! I am an organics person, I prefer organic, not that we can afford it much these days, but in a perfect world my home would consist of only organic food, cleaning supplies and everything else, but ofcourse the stuff that will kill ya is what I can afford....lol.....

Justin Now Before Biomedical Treatments & Hyperbarics

Justin experiences melt downs that drain you. His inability to talk makes things difficult for him
and like anyone who for example was in a foreign country and couldn't get their needs met, -would probably melt down too, he really gets frustrated at just not being able to communicate his needs.

He is a creature of habit. Everything has to be routine, however, he is a ......professional mess- maker. He hates order in his environment with things. He takes his toys when they are neat and in order and walks over to the box, tips it upside down so that everything is everywhere and walks away.

He has a fascination with balls and helicopters. He can fill a ball pit with all the different type and size balls he owns. As for his helicopters, he has his favorites.

He is still in diapers at 5 years old, potty training has been quite......interesting.

http://maxweber.hunter.cuny.edu/pub/eres/EDSPC715_MCINTYRE/Autism&Toileting.html

[Taken from the above website to better describe why Justin is still in diapers at age 5; but before I continue, Justin was recently evaluated by a child psychologist. He is chronologically 5 y/o but intellectually between 2-3 years old - which is about the age for the average child without autism to learn to potty train, so technically, intellectually he is at the age to learn. However, add on the autism and the following information might explain it better]

Current toilet training methods and practices

"To fully understand the particular difficulties care givers and teachers can have in toilet training autistic children, it is important to review the current and prevailing philosophies in toilet training typically developing children. A review of current journal articles revealed that most practitioners advocate a child-oriented approach to toilet training. This emphasizes child readiness and employing a system of positive reinforcement (Stadtler, Gorski * Brazelton, 1999). Brazelton, et al wrote that achieving bladder and bowel control could contribute to a child's self-esteem. "This model of toilet training comprises three variant forces in child development: physiological maturation (e.g., ability to sit, walk, dress and undress); external feedback (e.g., self esteem and motivation, desire to imitate and identify with mentors, self-determination and independence) (Brazelton, et al., p. 2)." Brazelton et al. stress the delicacy of a child's self-esteem during initial successes in toilet training and emphasize the need for strong parental support during initial and successive toilet training phases. Parents are told to have the child use a potty chair, place stool from the diaper into the potty chair, watch parents go so as to imitate them, let the child sit on the potty fully clothed, and to time when urination and bowel movements are most probable. Parents are encouraged to explain to the child what is expected when they are taken to the potty and to praise and reward any successful eliminations while being careful not to criticize accidents, and to have the child say "bye-bye" to items being flushed so as to diminish anxieties.

The literature shows that even typically developing children often have difficulty mastering toilet training (Hagopian, Fisher, Paszza & Wiezbicki 1993, Blum, Taubman & Osborne 1997, Buchholz 1999, Issenman, Filmer & Gorski 1999). A common problem among typically developing children is regression, resulting in Encopresis and Enuresis. Authorities highlight targeting self-esteem issues in treatment of these problems. In contrast, autistic children's difficulties in toilet training tend to be less related to self-esteem issues than to problems intrinsic to their disorder."

Problems of Autism in toilet training
"The specific characteristics that impede autistic children's independent use of the toilet are outlined below. Autistic difficulties in understanding social relationships limit the success of a social reward system such as recommended by T. Berry Brazelton, et al. (Stadtler, Gorski, & Brazelton, 1999). This method encourages the typically developing 2-3 year old child to have a sense of pride or accomplishment for success in toilet training. As discussed earlier, autistic children often do not feel pleasure from making their parents and teachers happy. Thus a program based on social motivation would not have great probability for success. Difficulties in comprehending language and logic may inhibit the ability to understand what is expected in regards to the toilet procedure. Autistic children often do not understand an explanation of why they need to eliminate in the toilet and not their diaper.

Furthermore, autistic children's attachment to routines and resistance to change may make the transition from diapers to the toilet difficult. They may be attached to the sensation of wearing diapers, having used them daily for 2-4 years. They may not like the stimulating environment of the bathroom with its bright lights, echoes, and sounds of running and flushing water and they may be averse to the change in temperature they feel when they take off their clothes (American Psychiatric Association, 1994; Boswell & Gray, 1995.)

Autistic children's toilet training can be further impeded by their idiosyncratic relationships with their bodies. They may not know how to read bodily cues, and therefore are not aware of the urge to use the toilet. In addition they may not mind the sensation of being soiled. The reasons for this are unclear but some experts have speculated that this may be related to central nervous system abnormalities in children with Autism. (Hagopian, Fisher, Paszza, &Wiezbicki, 1993). All of these factors contribute to the need for adaptation of classic toilet training methods to suit the special needs of autistic children........" (end potty training notes)

{my comments cont....}
Justin will at times run aimlessly back and forth and start laughing
while looking into....nowhere. It's as if he went inward into his own world.
He makes all kinds of sounds with his mouth and movements that will tell
even a child he is ......different.

He has never really played appropriately with toys and one of our first
indicators that something was wrong was with his spinning of things, big
wheel....wheels (upside down), helicopter propellers, loved to stare at the
ceiling fan whether on or off.

Doesn't recognize sadness, or ill feeling; will laugh when you laugh, but was
laughing at mommy for example when I was pregnant with my second child
and experiencing severe morning sickness and ......hugging the bowl!

Justin has Occupational Therapy, Speech and S.O.S. Feeding therapies weekly.
He's had therapy for 4 years with little progress. If anything I see it as a tool
to help him learn and experience different things. He does go to Pre-school.

He used to go for Biofeedback until we moved too far and couldn't afford to
continue. His therapists at that time agreed with me, that there was an
improvement overall with his focus and understanding with biofeedback,
however slight. Every child is different. What works for one, might not work
for the other, but you educate yourself and find the credible resources to help
direct you. No one knows your child better than you, the parent/care taker.

Justin has always suffered and still suffers from Constipation. On top of that
he is a great...holder. He is so afraid, (who blames him with all his experience
in that department being negative), to have a bowel movement that he goes
through great stress when he has the urge because he knows he is getting his
weekly liquid suppository which he hates. I am the administrator and I can tell
you I hate it. I feel so bad for him but have no choice. He once ended up in
the ER with severe cramping and I was told after some very invasive testing
that he was full up to his diaphragm with bowel. What he went through that
night at the ER I cannot put on one blog only to say when I brought him home
I couldn't put him down, I had to try and hug away both our nerves and fell
asleep with him in my arms, I cried. He orally takes a laxative and stool softener.....
even with that he will not go. So my poor boy is so full of ....junk in his system
that surely doesn't help him. I have heard other moms tell me that they have
experience a 360 degree change in their child with constipation issues because
of the hyperbaric treatment. I'm looking into that because I don't yet understand
fully the science behind that...but I'll keep you posted.

Justin's Immune System is weak

Justin gets fevers almost on a weekly basis, (especially in the cold months). He seems to catch every virus out there or just gets sick quick at the change of the wind. When he is sick it is extremely heart breaking because I can only guess the details- to what he is feeling because of his inability to communicate. Just recently he was extremely ill and lethargic. He was tested for just about everything from Strep to Swine Flu, all negative.

Taken from the web page:
http://www.lookingupautism.org/Articles/ImmuneIndicator.html

" Two groups of researchers from the MIND Institute at UC Davis reported that autistic children had a dysfunctional immune system, giving them an abnormal response to pathogens and other agents in the environment."

There is another informational web page titled:
An Introduction to Possible Biomedical Causes and Treatments for Autism Spectrum Disorders
http://www.iidc.indiana.edu/irca/Medical/Biomedical.html
"Currently, there are four broad areas of focus which conceptualize the possible biomedical causes of autism spectrum disorders. Most researchers and practioners feel that all four areas are intertwined and that each affects the other. Gastrointestinal abnormalities, immune dysfunctions, detoxification abnormalities, and/or nutritional deficiencies or imbalances have all been suggested as potential biomedical “triggers” for autism spectrum disorders. It is hard to determine which scenario came first. It is felt that one problem is connected to the next that follows. But deciding which came first seems to be another part of the puzzle to address for each individual.
Gastrointestinal abnormalities, immune dysfunctions, detoxification irregularities, and nutritional deficiencies or imbalances may cause some of the same symptoms. Often a problem in one of the four biomedical areas impacts one or more of the other areas. However, for purposes of simplification and clarity, each of these will be discussed separately. ....."

Please help us with donations in order to get the treatment for our son, thank you.
The following videos are when he was ill with a high fever...

Haircuts and Brushing his Teeth

Haircuts, Justin hates them. I hate taking him to them. It's a scream match and it's not uncommon for us to leave the salon- both filled with hair to our ears, literally. We are due today for a haircut.

I begin with trying to warn him ahead of time in a 'happy voice' as if we are introducing a day at the fair! "Alright, we are going to get haircut today", (I start off voice calm, nice and slow), then after he objects his..."a-done", shaking his head-no.....I tell him, "It's ok, fun...tickle, tickle, you can do it"

Which ofcourse, get's me no where; somewhere in my head, I believe this is somewhat preparing him. I think I do it more for my nerves. Nevertheless, it has to be done. The buzz of the clippers especially around his ears is what bothers him the most, but with the way he fights and waves around, (did I mention kicks), there is no way I'd allow scissors, ...no the clippers are faster and
have to do. I normally just ask for an easy buzz-crew cut all over (very short so we don't have to
undergo this for a while again), and clean it up with the mustache trimmer, (more buzzing).
Fast and neat. As soon as we come back (I'll hopefully be able to record the ordeal), I'll post the
footage, Daddy is coming for this one. The bad thing about this time around with haircuts is that on April 21 Justin fell in his school gym and smacked his head against the concrete wall and he had a huge goose egg, (see video below). Well, he still has remnants of that bump, I believe his doctor called it calcified blood? So because he doesn't talk, I don't know if it's still sensitive but I know he is aware of it there because I catch him trying to grab it with his fingers....

Update: (I've added the hair-cutting footage)

Tooth-brushing....another ordeal though not anywhere as stressful. I brush Justin's teeth because he has trouble holding and maneuvering certain small objects, (i.e., spoons, toothbrush, etc). I have to be fast and I made up this diddy I sing in order for him to know there is a before and after to the event. He knows when the song is almost done, I'm done....unfortunately using real toothpaste is out of the question as Justin will swallow it. I use organic toothpaste 'safe to swallow' or so it's labeled that way, for toddlers.

Justin is my first born, his strengths

Justin does show affection to Mommy & Daddy. I have to say he is my first born and I spoiled him with affection from the first moment he was placed on my chest, when born. I had a c-section with both kids and when Justin was born, I immediately fell in love. Some women say that they don't immediately feel like they "love" this being that's been living in their belly making them uncomfortable all that time, ....not me. I always knew I wanted to be a mother. I'm glad I did wait until I was older. When younger your just not ready emotionally, intellectually.....life hasn't prepared you enough....so when I did have my boy at 33 I was ecstatic. I carried him ALL THE TIME. Yes I know, I did not follow any of the rules. I wanted to hold him all the time. I sang to him, he was my biggest fan. I have video footage of how he'd react when I sang. He was very colicky and constipated from the moment I brought him home. He was so tiny and I a new mom at that time was so afraid to hurt him, he seemed so fragile. I also made the mistake of making it pin-drop quiet in the home so he wouldn't be disturbed which makes for a very sensitive sleeper to noise. I always hugged him, talked to him and told everyone how I couldn't wait until he spoke to me and said, "I love you, mommy"...til this day I wait. He tries to talk, but most of his talk is echolalic. He doesn't really refer to me as mom, he says, Da....for mom, for dad.....for when he wants someone to stop what they are doing if you interrupt for example his cartoons and attempt to change it.

Still Justin is affectionate and I should consider myself lucky because although he cannot talk and is most of the time in his own world, he comes over at times and hugs me, he loves women with long hair and will go over and smell their hair, or just let their hair rub on his face. He has so much energy, in fact, I think that is who took most of my energy on his way out!...lol, yes my little boy has his moments when he just makes me smile and laugh; he is quite a character, very self driven, confident and smiley faced, normally seems happy go lucky.

Children are such a gift, a blessing. Both my children have taught me so much for being so little.

I often wonder how this is affecting Sierra, my youngest. She is only 15 months old and to say that her environment is full of chaos and unpredictability is an understatement. She is very tough. Very independent, but nevertheless a child who is at the age of absorption. She is basically like a sponge taking everything in, so my question would be how is this going to affect her as she gets older, how has it affected her. I read a report once about how we as adults still have imprinted within us things that we took in as a child, in the earliest stages, we are being molded to what we will become as adults. From the moment Sierra was born, I for example had a c-section that opened back up so I had to go home with an open c-section wound and have a nurse come and pack it. I wasn't able to care much for my little Sierra, family members came to help, I feel like our 'bonding' didn't happen. I would spend (and still spend), a lot of time with Justin out in therapy, doctor appointments, so daddy is with her a lot. I feel like I'm missing so much valuable time with her and I'm an at home mom! On top of that in Sierra's little world, she deals with Justin's melt downs, his lack of attention to her, she witnesses his screaming when it's time for a bowel movement and, so many things that I just wonder how it affects the sibbling of a special needs child, especially a younger one. They learn so much from their sibblings, how much of the negative autistic behavior will she learn and think to be normal and take upon herself. Yes the sibblings of a special needs child are often left in the dust. I try and make a conscious effort sometime in the day to let it be just Sierra and I doing "something" whether it's playing...., singing, learning something, but again, it has to be difficult to the sibbling(s), especially when they are that young. I had a parent tell me that one of her children asked if she loved them because she was always with the other, (special needs child). We get so consumed and stretched thin, that at times the most important things (or little ones), are not given the amount of attention they deserve and it goes unnoticed.