Autism Recovery - Justin's Recovery Wish

Update on Justin & Me (his mom)

2011-10-10T18:59:00.000-07:00

A little update, I haven't written in a while...

Justin has stopped eating one of the only two things he would
eat daily. This is extremely nerve wrecking for me because
he did this just once before and we were told that he was
close to getting a G-Tube, (gastric feeding tube), inserted;
(in order for proper nutrition). Thankfully, before any of
that could take place, he started to eat again.

But now, once again, he seems to either be getting tired of
eating the same thing over and over again, (which as I mentioned
before is due to his sensory integration disorder, he has an
severe aversion to most foods); or I have no idea what...
at first, I thought perhaps that my little boy was having
some severe dental issues with our current change in
eating habits. But evidently a trip to the dentist
today has ruled that out.

After some x-rays, his cleaning and a very
'scream filled' dental exam, (Justin really, really
hates dental visits, even if for something as benign
as a cleaning!), the dentist said everything looks good.

We are going to put him back on the S.O.S. Feeding
therapy program, just to get someone to help us.
We've tried all kinds of different things to no avail.
He is beyond picky and so we find ourselves trying
to visit an area that although it didn't work before,
we are hoping since it's been a while, maybe something
will click a second time around. He's grown a little,
maybe we might get lucky. I really don't want to even think
about considering the G-tube so we have to do something
right now and this is it.

Consequently, Justin's mom (me), is writing her first Novel! Fiction: Romance/
Suspense. I've entered some writing contests and will be adding a link on
this site with my website information, (when ready).

Thank you as always for your support and beautiful words of encouragement!

Update on Justin

2011-01-26T15:33:00.000-08:00

Justin recently took the Organic Acids Test (revealed so much info), started him on the Olive Leaf and Grapefruit Seed supplements and re-started his MB12 shots; the yeast die-off is difficult to go thru because he has so much in his system. He is something short of yodeling, darting back and forth, looking upward toward nothingness and laughing hysterically --(which might I add is very contagious! lol he will start laughing, then I follow, my 2 1/2 y/o after that and then my husband). He is laughing at times so hard, he drools!

We went through this last time and then he was so much better, clearer, calmer afterward; but during the yeast die off, he does go through some changes with respect to personality, basic demeanor; meltdowns. Now as I write this he is grunting and making all kinds of loud sounds.

We are going to try and get some other tests done too. I feel so blessed that we have a very good team helping Justin. His regular Pediatric doctor, his Dan Doctor (which I like to call an Autism Specialist), his therapists and his child psychologist all work together wonderfully to include and respect my input because who knows the child best? So I am confident that we have a great team of qualified individuals working together for a common goal; "TO HELP JUSTIN BECOME ALL HE COULD BE AND MORE!" Ofcourse, how could I forget our wonderful pastor and everyone who's been kind enough to include Justin in their prayers.....the most important element of healing in my opinion.

We have also added "Therapeutic Listening" which helps ground him and stay focus when learning a task. He has difficulty with fine motor and is practicing daily with writing and reading. I will be posting another video soon. He is also going to be starting his horse riding therapy again in the spring and with that Hippo Therapy.

Justin loves to play video games. I can thank his father for that, lol; one of his favorites are Super Mario Galaxy for Wii that his Godfather bought him for a gift; I am going to be posting a video with him playing; he's beat mommy in that I still have an Atari mentality, lol; he does try and being visual he learns best that way too. My reasoning is if I keep his little brain busy and exercising it's got to pay off right?

To all the nice notes, emails and prayer wishes for Justin -I've received, thank you. Also, to those of you who've asked for my opinion on your childs recovery, with heartfelt appologies, I cannot give any advice. As you know every child is different. What works for some, might not work for others. A very good Dan Doctor who has a great track record on children recovered is whom I'd go to for starters. Ask questions, read-read-read, research and make educated, researched decisions on everything with respect to your children. Keep notes. I keep my own medical record on Justin and ask for copies of everything! Generation Rescue and TACA are also great resources and have so much information on their websites. I sincerely hope this helps you. God bless you and the best of luck in your research and decisions on helping your child.

Well, this is all for now, thank you for visiting "Justin's Recovery Wish" website and I will be posting more video on Justin soon.

The following video shows what Justin was like back in May of 2009 during the Yeast Die Off period.

Justin's Learning Process

2010-10-02T18:36:00.000-07:00

Justin has been doing quite well at home; we've been teaching him reading, writing & spelling in the most simplified manner for an autistic child to grasp. Every child is different and furthermore, every autistic child is yet- more different and each on a different level of the autism spectrum. You just never know which child will adapt to which manner of teaching.

Justin is a visual, and loves visual demonstration and videos as well as certain video games.
Justin practices coloring and cutting as well as putting on and taking off different clothes pieces and shoes. All of which are extremely difficult for him. But he tries and is getting better at it.
We even have sensory play where I will bring out the flour & water mixture or jello which
to Justin is a sensation he really does not like. His sensory integration disorder is to blame for that so I try to desensitize that yucky feeling he gets with over exposure; we've been at it for years, it might take more years to come, he just does not care for certain textures. Although he does seem to like careful play with fingerpainting. (Careful meaning I have to have a wet rag that he can clean the paint off with after each time he dips into the paint).

Teaching a child with autism is a matter of repetition and keeping a schedule so that he knows what comes next, what to expect.

We work hard and work together and that is what it's all about. He is a visual and really surprises me on a daily basis, he's smart and will show me on his own timing all that he can do.

We invite you to view the videos below this post and see how wonderful he is doing. Again, thank you for visiting our site and sharing our story.

NOTE: An added note, the video below with his writing, (to be a little more specific), his fine motor (e.i., holding a spoon, pencil, etc.), has always been quite difficult for Justin and he has not been this consistent in his holding a pencil for example without hand over hand help; he was not holding the pencil in the correct manner until recently and is doing so consistently and we are really excited about that, furthermore he was scribbling and definitely not writing his name, which although not perfect, he is doing now.

Justin's Spelling-Sequence Exercise

2010-10-02T16:12:00.000-07:00

Justin Writing

2010-10-02T15:57:00.000-07:00

Justin's New Guitar

2010-04-25T09:51:00.000-07:00

A special Thank You to Mrs. Debbie Goodrich for having donated this beautiful guitar to Justin; funny story:

Mommy likes to watch and listen to the Antonio Banderas clip on youtube where he is playing guitar and singing, (from Desperado); Justin would come into the kitchen and mesmerized would watch Mr. Banderas play the guitar.....he would not let me "X" out of that clip......I thought, 'maybe he likes the guitar, or maybe the singing or maybe the song', wasn't sure...

Recently we took Justin to our community college for some Reiki share sessions and
across the way they had a class on 'Guitar playing' and Mr. Justin pulled me over to
the glass window/doorway to watch. I saw as his face lit up as he watched the instructor
play the guitar.

The next Reiki Share session, Justin kept trying to say "Guitar" and up until we passed
the very same doorway (which at this particular time was open), did I know what he
was trying to say, "guitar". Once again, he pulled me toward the open doorway and
I asked the instructor if for a second, Justin could 'touch' the guitar. When she said
it's ok, Justin went over to one of the students and strummed her guitar, his face lit up;
it brought tears to my eyes. I had no clue he was so interested in guitars.

Then, the woman, Mrs. Goodrich offered us an extra guitar she had for Justin. Here
is a pic and video of Justin with his new beautiful guitar.
Again, thank you so much Mrs. Goodrich, it melts my heart the kindness of strangers
that make my little boy smile (God Bless You).

Justin's Prayer Video

2010-02-19T20:15:00.000-08:00

Back in May 2009 I recorded Justin Praying;

Haircuts and Brushing his Teeth

2009-12-02T07:50:00.000-08:00

Update: (12/15/09)
In May of 2009 we started a journey toward bettering if not recovering Justin. So far he's had about a month of HBOT Therapy, neurotransmiter testing, IgG Food Sensitivity testing, etc. He's on a plethora of supplements and continues to go to his OT, PT, Speech & Feeding therapies that he's been going to since a little before age 2. Although we are far from recovery and only crawling at this Biomedical Process due to our financial limitations, the following video is the reason why Justin and I will keep at it...

It has been about 7 months and the video footage of his extreme discomfort for haircuts shows what we went thru a good part of his little life because of his sensory integration disorder. Well, this was Mr. Justin today getting a haircut, absolutely like black & white the way he experienced this haircut. The last one was a breeze as well. What a difference...
(look at last 2 videos, they are from todays haircut experience ;)

5/09
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.

The last 2 videos are from today's haircut experience; great improvement...

Justin's Diagnosis & Eating Habits

2009-12-01T07:04:00.000-08:00

To say an autistic boy doesn't suffer....angers me. Believe it or not a nurse had the gall to say that to me once.........to say I was angry about that is an understatement. My son not only suffers, he is unable to fully communicate to me the detail/extent of what is wrong, he will point to something and moan, cry, hit, get angry, he isn't able to say, mom, I have a headache, or I feel nauseous, etc. 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, I was told apgars 9/9 "you have a healthy baby boy", he started the Mama, Dada, Gaga then suddenly stopped. He started drooling....all the time. Even at over a year & a half 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, if not better his world any bit, safely. 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....and his meltdowns....whew!

When he was diagnosed, it was like the biggest fist ever, punched me right in the heart. 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/disorder......all I know is that my beautiful little boy is somewhere in there and I'm determined to bring him out.

He only ate 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 would eat. It is part of his Sensory Integration Disorder. He has such an aversion to most foods, he gags. We've tried different feeding groups, different suggestions from just about anyone, (therapists too), nothing works. I finally got him on the Gluten Free and Casein Free Diet (GFCF), but still very limited to what he will eat. (Pictured above-right), that is all he will ingest, daily. Before the GFCF Diet it wasn't any better....He would eat 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 felt so bad because sometimes he would get tired of eating the same thing everyday and would only ask for say, ......apple jacks the whole day! Now it's if he gets tired of the GFCF Foods he eats, he will only eat .....the crackers all day, it's maddening! 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.....Nevertheless, this is my Justin's eating regimen. Believe me, I've tried so many different things, tricking him, therapies, specialty feeding groups, he is very tough when it comes to eating, but he will try to lick finger paint when we are painting, but gag with real food....I just don't know.....

A Slow Progress

2009-11-08T07:08:00.000-08:00

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

"JUSTIN'S POEM"

2009-06-03T21:07:00.000-07:00

"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
staring off into space, other 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 through 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 "During" Recovery Process

2009-06-01T08:18:00.000-07:00

11/19/09
Justin is back on the GFCF Diet! We've had some tests done and found that he had a food sensitivity to Orange; (and many other foods); So, we are back on the diet and Justin has now just started eating GF Crackers which I'm really excited about; he has such an aversion to most foods it was shocking to me when he broke one of the crackers into pieces, put a piece in his mouth and ate it; I held my breath!

For those of you who aren't used to EXTREMELY picky eaters with sensory problems, this is big...we have him in feeding therapy 3x's/week now and are trying to get him to eat other foods on the diet; he still continues to go to his other therapies.

Justin also just got a haircut and did surprisingly well! For those of you familiar with his haircut video below, he hates haircuts; but did so well this last haircut a couple days ago, (and it was a different stylist!). With children like ours, routine and familiarity is important. So for him to have done so well with haircuts in general and with someone different cutting it, that was amazing to watch. I will record his next haircut, I didn't have the camera with me in this one; I guess I expected a fight....;)

I keep a tray with all kinds of different foods on the GFCF Diet out so that he may come and play or explore the food at will, no pressure. He will put an organic french fry to his mouth, bite it, but then put it back on the tray. He will do the same for a GF Veggie chip; in a perfect world I would love my children to eat all their fruits & veg. but it has been like pulling teeth to get Mr. Justin eating right and what is beneficial to his system. My daughter is much better at eating but at times will show some 'normal' pickiness....

As always thank you for reading about Justin and please keep him in your prayers.

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 Now Before Biomedical Treatments & Hyperbarics

2009-05-26T23:08:00.000-07:00

{Update} 11/19/09
Justin does now go to the potty but is still irregular with his BM. He still requires a diaper so, we are working it; Justin resists and his sensory problems make it more difficult, not easy.
----------------
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

2009-05-24T11:38:00.000-07:00

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...

Justin is my first born, his strengths

2009-05-23T23:54:00.000-07:00

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.

The Power of Prayer

2009-05-22T08:40:00.000-07:00

I believe in the power of prayer. I believe in God and that Jesus Christ and even just his name has so much power. I ask that everyone say a short prayer of healing for my Justin. The more people
that pray the better. Include Justin Adam Romanger in your church prayer list. I thank you so much. God bless you for that.....enjoy the blog.

The Vaccination Debate

2009-05-21T20:40:00.000-07:00

Of all the things that anger me the most about this illness is the powers that be coming back to us with, "There is just no scientific proof".

I'm no scientist, I'm no doctor. What I am is a very angry mom with the common decency
and sense enough to read; read any and all material I can on the subject of Autism and the debate of who is to blame; the vaccination part of it and whether or not there is a genetic predisposition to equal such a recipe as that of Autism.

The part that really upsets me as a parent and as someone who can......read, is that there seems to be no argument that the vaccinations have chemicals unhealthy to a human adult, so, if that is the case, what is it doing to our babies? It's inconceivable....I'm scared of giving even recommended safe doses of any medicine to a baby, let alone stuff you would not consume yourself as an adult, knowingly?

http://www.generationrescue.org/pdf/substances.pdf

The above link has great information on some of the unhealthy extra's that the vaccines have in them; if I understand this correctly, many of them "preservatives" so basically they'll last longer and not spoil, while trying to be sold? I'm asking, because I cannot comprehend, why in the world we are injecting infants, with underdeveloped immune systems such things as, Thimerosal (form of mercury), formaldehyde & many others;

Taken from the website of the National Cancer Institute:
http://www.cancer.gov/cancertopics/factsheet/risk/formaldehyde

1.) Formaldehyde is a colorless, flammable, strong-smelling chemical that is used to manufacture:

building materials and to produce many household products (see Question 1).
Formaldehyde sources in the home include pressed-wood products, cigarette smoke, and fuel-burning appliances (see Question 2).
When exposed to formaldehyde, some individuals may experience various short-term health effects (see Question 3).
Formaldehyde has been classified as a known human carcinogen (cancer-causing substance) by the International Agency for Research on Cancer and as a probable human carcinogen by the U.S. Environmental Protection Agency (see Question 4).
Research studies of workers exposed to formaldehyde have suggested an association between formaldehyde exposure and cancers of the nasal sinuses, nasopharynx, and brain, and possibly leukemia (see Questions 4, and 5).

Taken from the http://wordnetweb.princeton.edu/perl/webwn?s=formaldehyde
formaldehyde, methanal (a colorless poisonous gas; made by the oxidation of methanol)

That alone without looking at any other chemical in vaccines, why on earth would we want this in any human beings body, are we talking about 2 different formaldehyde products? Again, I'm asking.....

Thimerosal, (Taken from the website http://www.immunizationinfo.org/thimerosal_mercury_detail.cfv?id=3)

Thimerosal/Mercury

Mercury in Vaccines

Updated: 08/06/2008

Toxic mercury exposure has a wide range of adverse health effects. Currently in the United States there is a public health effort to reduce human exposure to mercury from all sources. (1)

What is thimerosal, and why is it in some vaccines?

Thimerosal is a compound that is 49.6% mercury by weight. Although it is not used in all vaccines (for example, it is not used in measles-mumps-rubella or chickenpox vaccines), it has been part of the manufacture of many vaccines since the 1930s. Thimerosal has been used:

to kill the bacteria that make the vaccine itself (e.g., whole cell pertussis vaccine)
to kill bacteria that might enter the vaccine during the production process (e.g., influenza vaccine)
as a preservative to prevent bacterial and fungal contamination of vaccines during their clinical use. In this case, thimerosal is added at the end of the production process either to the liquid vaccine itself or — in the case of dry powder vaccines — to the liquid used to dilute the vaccine
-----------------------------------

Now, we are told while pregnant, limit your intake of Tuna because of the Mercury.
Um, just out of curiousity, how much mercury would, (worst case scenario), Tuna have
versus what is injected by form of Vaccines? Albeit most vaccines today are supposed to be without Thimerosal, but the flu vaccine still has it?

I'm not saying, don't vaccinate, (I'm in no power or authority to say such a thing), I'm saying what all others are saying, make the vaccinations safer for our kids, our babies. This is all very real to me as far as what I go thru with my Autistic son, I am for "greener" vaccines

I am a believer in that we as a human race need to be a little more cautious what kind of junk we put in our bodies in order to make ourselves healthier, live longer. Read, educate yourself and know what you are doing to your body by eating with eyes closed.....<open your eyes>.

I was told before I had my second child that there was a big possibility that the baby would be autistic. I really thought about it, because I am not going to lie, it is so hard with a 'special needs' child. It can be draining on the whole family. My heart goes out to those families that have more than one special needs child, it is hard.

So, I took my chance and had my beautiful baby girl. Junk is still in the vaccinations so, I chose not to vaccinate. (Again, I am not talking for anyone else, we are all responsible for the choices we make for our children, I live with the guilt of allowing my son to be injected with all that ....stuff, believing that the physician who said it was necessary and safe, new best.

Will then the powers that be- sign- in writing- on paper-telling us with 100% certainty that vaccinations do NOT have anything to do with the Autism that all our children are getting, along with other ailments, absolutely safe, let me get that in writing please. ..............it won't happen.
I'm being quite frank in saying, this is soooooo concerning to me.

I feel really bad, because it boils down to this.....we as parents and care-takers must do what we
have to in order to help our children, heal, keep them safe. My advice to a parent that just finds out their child is Autistic, get a second opinion if it is going to make you feel better.....but, if all points to a correct diagnosis, take action to recover your child or atleast be proactive to make your baby the best he can be....don't just let it ride, after all....that child is still the little angel you had in your belly, just a little more special, that's all. Educate yourself, there is so much information out there, things that can help.

Another informative link: http://www.know-vaccines.org/autism.html

From the U.S. Environmental Protection Agency:
http://www.epa.gov/waterscience/fish/advice/
nearly all fish and shellfish contain traces of mercury. For most people, the risk from mercury by eating fish and shellfish is not a health concern. Yet, some fish and shellfish contain higher levels of mercury that may harm an unborn baby or young child's developing nervous system. The risks from mercury in fish and shellfish depend on the amount of fish and shellfish eaten and the levels of mercury in the fish and shellfish. Therefore, the Food and Drug Administration (FDA) and the Environmental Protection Agency (EPA) are advising women who may become pregnant, pregnant women, nursing mothers, and young children to avoid some types of fish and eat fish and shellfish that are lower in mercury.

Justin Before his Weekly Suppository

2009-05-21T13:24:00.000-07:00

{Update - 8/15/09}
Whenever we think we've found a solution to Justin's G.I. problems, his system just shuts down; we feel terrible that we cannot seem to get something to work better on his BM's.
He seems to react to something -newly presented to his system, then it just stops working. I really don't know what it will take to get my poor boy's system "normal". It's so frustrating because he goes through so much anxiety and discomfort not to mention his system must be loaded with toxic junk if it isn't eliminating from his body but once a week!

7/2/09
For the last few weeks we have been giving Justin some digestive enzymes and 2 knew probiotics via a Dan doctor's instructions. I've seen a gradual change in his bowel habits for the better. We still don't have it where it should be, (once a day or more instead of once a week); but nevertheless an improvement, (2-4 bowel movements a week). I'm happy things are slowly improving. In my book, and walk up the success ladder is in good direction ;)

Of all the things I hate in the 'tough love' department is when we have to do something that hurts our heart but is for the best. Whether we are trying to discipline (which might I add works not only differently for all parents, but when a special needs child is concerned, different rules at times apply. You really have to pick your battles), or administering some type of medical necessity, it is tough on our hearts.

Right before Justin gets a suppository he experiences so much anxiety, (see video below). He paces, walks around the couch, he cries, he screams and walks somewhat, 'duck-like', I can only guess because of the urge to go.

Justin only has a bowel movement once a week. Although I know I've mentioned it before, I myself find some comfort in venting after the whole ordeal is done. If I hated using a rectal thermometer on any of our children when they were infants, imagine having to do something just as invasive for 5 years beyond that infancy period.

One of the things that I really want to get started on as soon as possible, (finances are stopping us), is all of the treatments in Biomedical & HBOT that specifically target the GI system, that show promising results for children with Autism.

Here is a video just yesterday because it was, "Suppository Day".

I cannot tell you- how, (maybe it's that I lock the door of the bathroom and he spots me with a diaper), all I know is somehow, he "knows" it's coming. The anxiety, let alone the screaming, kicking, etc. during is soooooooo -mentally, emotionally and spiritually exhausting. I feel so terrible. I feel bad for him, I feel bad for Sierra that is usually in another room hearing her brother scream bloody murder, it's terrible. I sometimes feel like he can read my face because I'm certain it shows how painful it is for me to have to do this so that my little boy will have a bowel movement. It's either that or another trip to the hospital with invasive testing or procedures. Needless to say that when the ordeal was over he was sweating and shaking, (after administering/during his attempt to go). Justin will even stop eating all together when it is time for a suppository, (again guessing because he feels full?), nevertheless, one of those things that have to be done.

When Justin Comes to Play the Cats Run Away!

2009-05-20T08:16:00.000-07:00

We have 3 cats. I never see them. From the morning to I put Justin to bed. They have become nocturnal cats. They play at night. Why? Because the Justin-ator scares them. They are so scared of Justin's unpredictable running, jumping and other movements that they literally only come out at night or early in the morning before Justin wakes up.

Justin doesn't touch them or hurt them. He likes to watch them run away when he approaches them. At times he is absolutely unaware of them. But other times, he comes to focus as if peering out of that autistic window and sees.

So Justin unknowingly bullies the cats and forces them into a world of night shift. I think they prefer it that way, as they wake us up sometimes with their playing.

Prayer Invitation

2009-01-15T18:34:00.000-08:00

We invite all who'd like to pray in unity for Justin on May 6th, 2010 at 3:PM CST for healing, to join us; We believe in the power of prayer and....

"This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us - whatever we ask - we know that we have what we asked of him" (1 John 5:14-15).

5/6/2010
THANK YOU TO ALL WHO JOINED US IN PRAYER FOR JUSTIN, WE APPRECIATE IT ;)

Autism-Vaccine back and forth...

2009-01-12T15:00:00.000-08:00

In my eyes, it's very simple; the powers that be are too busy nickle & diming every detail of all that is said with any argument involving vaccinations and autism.

What I would like to see in order to convince us parents is that they give a statement in writing that says a little something like this:

"We are 100% certain that Vaccinations do not cause Autism or any other developmental disability or neurological injury"

That is not going to happen; if vaccinations were in fact so safe....there would not be a "National Vaccine Injury Compensation Program" http://www.hrsa.gov/vaccinecompensation/

I believe in Dr. Andrew Wakefield's work and I know what symptoms my son got with certain vaccinations; It's a shame that so much time and effort is being put on dissecting Dr. Wakefield's work, instead of finding a cure for Autism.