Trenton Gruber
Born June 8, 1997 in Denver, Colorado, USA.
My Family
Hello, I am Trenton Gruber. I’m 7 (2005). My mom is Rebecca Gruber (Becci),
my dad is Charles Gruber (Chuck). I have five brothers and sisters; Jeremy Meyers
(24 yr), Gabriel Meyers (22), Adam Meyers (21) and last but not least, Mikayla and
Sydney, my 7-year-old triplet siblings.
Two Brain Injuries in the Family
Two of my Mom’s children have brain injuries - my brother Adam and me.
Our Birth
The triplets, 2 girls and a boy (me), were born at 29 weeks gestation. The order of birth
was as follows: Mikayla (2 lb 14 oz) first, then me (3 lb 1 oz) second, and lastly Sydney
(3 lb 6 oz). Our lungs had not developed and we were all put on tubes and given surfaction.
We all had our critical moments switching off one right after the other struggling to sustain
our lives that first month. You'd have thought that we had some unique form of communication
between us. We were all happy to get out of our incubators after a little over a month and
gradually join each other in one cosy crib. All three of us had jaundice, we were lactose
intolerant (especially Sydney and me), and we were on oxygen for about 6 months, all of us
weaning at different times.
My Progress
Initially,
I was diagnosed with Periventricular Lukomylasia (PVL) caused by an intraventricular bleed at
birth (a blood clot in the 4th ventricle). We were not told this until a few days before my release
from the hospital. The doctors mentioned that I would have multiple delays but no idea to what
extent. However, I seemed to recover from my critical moments the quickest. I was very quiet and
seldom cried. During the first year of my life we waited so I could be tested on my first birthday
by Child Find (Resources for Young Children). At that time I began conventional therapy (Physical
therapy, Occupational therapy, and Speech therapy) two days a week. This continued for 6 months
with very little results. Well, my Mom, already having once before experienced being the mother
of a brain-injured child, was not satisfied with conventional therapies and seemed to gravitate
to other moms with similar problems for help. Through this she discovered the book "What to do about your brain injured child" by
Glenn Doman. For the first time, she felt this was the answer of hope for her child. She called
the Institutes
for the Achievement of Human Potential (IAHP) and registered for the “What to Do about your
Brain-Injured Child” course. During the 3-month wait for the course Mom started a home program
with me. (I was then 21 months old, literally a lump on the floor and not
able to lift my head). The information from the book gave Mom enough information to start with
a tactile and speech program, and the incline plane. I was flopping from my tummy to my back
and had extremely rigid legs. I gagged 99% of the time when I was being fed. At this time I was
in leg braces, and the doctors were talking about hip surgery, and eventually getting me into
a walker. I was also diagnosed with a strabismus (wandering eye) and was wearing an eye patch.
I currently only see using one eye because of this.
The Institutes (IAHP)
Mom
took the “What to do about your brain-injured child” class (April 99) by herself
and she and I were so inspired that she pulled me out of my conventional
program, but not without a lot of criticism and scepticism from the therapists. We knew this
was the right program for us and we started patterning within the week.
It took Mom 2 months to find enough volunteers to do 3 sessions of 5 patterns each day. I fought
against the patterning for the entire 5 minutes for 3 months. We lost a lot of volunteers during
that time as they thought this was so cruel. We stuck to it and eventually got into a good routine,
doing the program 7 days a week. The first year our program consisted of the tactile, speech program,
patterning (15 x day), inconsistent Intelligence program, horse therapy (which didn't help), hanging
from a dowel, vestibular activities, and masking sporadically. It took about 6 months for me to
learn to crawl off the inclined plane using my right arm only and gradually using my other limbs,
it took us almost 2 years to reach our crawling goal of 500 meters. We desperately wanted to do
the IAHP Aspirant
Program but we just couldn't afford it.
More Progress
In November 2000 he started pushing into the creeping position. His speech and comments were excellent.
We then dropped one patterning session. Our program now consisted of two patterning sessions (six patterns
each), masking about 20 times each day, vestribular activities, hanging, manual respiratory patterning (30 min
a day) and playing creeping games the rest of the day. We practiced going up/down stairs and was going to
pre-school 2 mornings a week (this was a big mistake).
More Progress
In November 2000 I started pushing into the creeping position. My speech and comments
were excellent. We then dropped one patterning session. Our program now consisted of
two patterning sessions (six patterns each), masking about 20 times each day, vestibular
activities, hanging, manual respiratory patterning (30 min a day) and playing creeping
games the rest of the day. We practiced going up/down stairs and was going to pre-school
2 mornings a week (this was a big mistake).
Seizures and Nutrition
In April 2001 Mom noticed I had started having seizures. I was very sick from January -
May 2001 with streptococcus leading into Scarlet fever in May. We began a gluten-free, sugar-free,
dairy-free diet to get me well. During the summer I progressed rapidly. We spent another part of
our day creeping at a local church and on the grass at the park. Mom continued to do patterning,
vestibular activities, increased masking to 40 a day, and respiratory patterning to 2 hours a day,
and a rather inconsistent intelligence program. In August Mom attended the Lecture II at IAHP and began
the 6 week medullary reflex program. It ended up taking us 7 weeks but we were faithful doing 800 rolls
everyday 7 days a week. The results were worth the exhaustion we both experienced. My eyes looked better,
I ate better, I started sitting straighter, I was more alert, and my creeping went from 400 meters a day to
1600 meters once or twice a week in only 7 weeks. Mom then attended Lecture III in October 2001 full of
enthusiasm that she needed to add more to our program.
patterning to 2 hours a day, and an inconsistent Intelligence program.
We then built the gravity-free environment and ordered the respiratory patterning machine (started that in Dec 2001).
We then added assisted walking on the overhead ladder 60-70 trips on the ladder each day, continued 800 meters of
creeping 5 days each week, and increased masking to 65-80 a day.
From IAHP to Family Hope Centre
In February 2002 we left
IAHP and joined
the team at The Family Hope Centre in April. We have continued a similar
program with the assistance of FHC.
Here is what we have done in Trenton's (5 1/2 years) program (4 ½ years doing program
8 plus hours a day 7 days a week, gradually decreasing to 6 days a week, and now 5
days each week):
- 12 patterns
- Incline plane
- 30 laps on the overhead ladder (13 meters long)
- 65-80 masks
- 20 sessions tactile
- Meduallary rolling board
- 6 anti gravity activities 2x day (inconsistent)
- 5 sets of 10 word cards 3x day
- 2 homemade books a week
- math dots 3x day
- resp machine 10 hours at night
- Co2/O2 inhalations 20x a day 60 seconds each
- 400-800 mtrs creeping 5 days a week
- Continuing a dairy free, gluten free, sugar free diet.
Mom has also had to do programs for each of my sisters, who had mild issues.
Currently, April 2004, my progress has slowed down, we are now looking
into alternatives to help with my body structure, and seizures.
ABR
Because of personal issues, Mom is only able to dedicate 6 hours each day 5 days each week to my program,
so it is extremely important to know that we are doing a program that is going to give us results.
We are doing
ABR,
but not having the necessary resources, we have not been able to afford to attend evaluations
yet, and we are not really sure if we are doing it right.
I work very hard and I am now old enough to see how different my life is around
other children my same age. I often feel very sad watching other children
run and play, even write their name, knowing that I struggle to perform
otherwise simple tasks.
Mom and I would so appreciate the resources to enable us to go for an ABR evaluation.