Hello
everyone ☺ Are you raising a child with autism as well? What would you say is one
of the most challenging tasks you have to face each and every day? I was
chatting with a friend last night (Hi Cindy! ☺) and we agreed that making sure
our kids get what they need educationally is one of our most stress-inducing duties
ever!
Here’s
our experience with it… “Flashback” and recent update included at the end also
☼ You get the whole spectrum today! Have a brilliant day! ☼
Academic Challenges
September 2000 to January
2008
With a lifetime diagnosis of
autism and a history of pervasive delays, the world of academia would be
bristling with challenges for Benjamin. No matter, we would take them on! But
as I mentioned before, his early school career brought him no less than four
classroom changes in less than three years. Routine is very important for
autistic kids and that was probably detrimental to Benjamin. Heavenly father
blessed him nonetheless, and he was able to overcome this hurdle, in part
because he was placed with good teachers.
We have felt that each of
the special education teachers that Benjamin was fortunate to work with from
preschool until now has taught him well, and has helped him develop something
different; he has always made progress each and every year of his school
career. Some years by leaps and bounds, some other years more slowly, but he
has never stagnated. We have felt so blessed to know that Ben was well taken
care of.
Doctrine and Covenants 93:36
reads: “The glory of God is intelligence, or, in other words, light and truth.”
Ben’s intelligence needed to be discovered; as a great treasure, it is buried under
layers of enigmatic behaviors. Peeling away the layers and getting rid of the
troublesome behaviors, Ben is teachable and can learn, in different ways than
most children, but he can nonetheless learn academic and practical knowledge, a
source of light and truth.
His IQ is not representative
of his real potential; Ben understands much more than he can express, we as his
parents have always felt that autism has a way to mask the feelings and true
intelligence of certain individuals it affects. Others seem to be
extraordinarily bright. Ben isn’t one of those people, he has a hard time
expressing his feelings and opinions, answering “I don’t know” to even simple
questions, such as “What did you do at school?” or “What did you have for
lunch?”
It is difficult to engage him in a simple conversation, let alone
in an academic debate!
However Ben isn’t completely
out of his element at school. The programs that he has attended since preschool
have been well designed for him. His Kindergarten class had four students for
one teacher and three aides, for a ratio of one to one. It was wonderful! That
set up continued for two years. In First and Second grade the ratio increased
to six students for four adults. Third grade was eight students for five
adults. And finally Four and Fifth grade were eleven students for three adults,
when he was moved to a program for much higher functioning students.
All the classrooms that
Benjamin attended were what would be called strictly “special education
classrooms”, Ben was never included or mainstreamed because of his social
vulnerability, low functioning academic skills, as well as his low
self-sufficiency competence. He was also always transported by special
education buses, much less crowded and noisy, thus less assaulting to his
senses than the regular education buses. I also thought he would be less likely
a target of bullies this way.
However Ben was included in
art, music, library, physical education, assemblies, lunch, recess, field trips
and computer class with the rest of the regular students. That proved
invaluable socially and enough of a boost. For the rest of the curriculum Ben
wouldn’t have been able to follow, so why should we have subjected him to
something too difficult for him and frustrated him beyond his capacities?
It isn’t good for man to run
faster than he has strength. It isn’t good for developmentally delayed children
to be pushed so hard that they might snap; all decisions must be made as an
educational team: parents, teachers and the Lord. Never forget to include the
Lord in all your decision making process: “Counsel with the Lord in all thy
doings, and he will direct thee for good; yea when thou liest down at night lie
down unto the Lord, that he may watch over you in your sleep; and when thou
risest in the morning let thy heart be full of thanks unto God; and if ye do
these things, ye shall be lifted up at the last day.” (Alma 37:37)
School also meant additional
therapy for our son. It was mandated by his Individualized Education Plan or
IEP for short. Depending on the level of a student’s disabilities, the IEP can
range from a few pages long to the length of a small pamphlet; Ben’s indeed had
started to look like a small book but has now shrunk to a more reasonable size,
as he has met more of his goals.
You have to understand that
children with IEPs cost the school districts a lot of money. One year I was
sitting next to the Director of Special Education who was entering the dollar
amount for each service as we were discussing it and saying that indeed Ben
will be needing it for the school year. Call me nosy, I did what any mom would
I have done, I let my eyes wander to her screen.
It is a miracle I contained
myself and did not gasp out loud when we finally reached the conclusion of the
meeting and she clicked ‘add’. The total for my son’s special education that
year would be $26,000. Did I feel “guilty?” No! We needed those services! Ben
was deserving and we certainly are upstanding taxpayers. To me it was a
fulfillment of the law of tithing, we pay tithing so the windows of heaven are
open to us and Ben can receive what he needs. (Now bear in mind that I am still
speaking about PA here; MN has been cutting and cutting services year after
year…)
The therapies that are
available through the schools are the same that can be obtained privately:
Speech, occupational, physical therapy and adaptive physical education. In most
cases Keith and I have been fortunate enough not have needed to fight for those
services. I can only recall one instance, at the very beginning of Ben’s career
in the Bethlehem area school district, when I indeed fought an administrator.
It was after the closure of
Ben’s Kindergarten classroom. The administrator was discussing the therapies
that would be made available for our son the following year at our IEP meeting.
She wanted to cut several of the services needed and I was fuming. I expressed
my opinion to no avail during the meeting. Afterwards, I calmly called her
supervisor and explained why I thought the move to cut services was uncalled
for: “Why would you stop services just because a child is progressing? He isn’t
caught up! He is only progressing, it doesn’t mean he is finished with his
learning.”
Unbeknownst to me several
other parents had already complained about that administrator and she was let
go before the beginning of the following school year. I am not glorifying
myself for complaining about an employee who crossed my path. I am only
mentioning this because my child couldn’t speak for himself, I am his advocate,
the only one he has. It is up to me to do the best for him. I need to do
whatever I can to help him achieve his full potential and get him all the services
he needs, even if it means making unpleasant phone calls to someone’s
supervisors.
After that incident the
Director of Special Education knew the Kingsbury family would stand by their
son and Mrs. Kingsbury was something of a mama tiger, which he told me himself.
I am still laughing about it, because to tell the truth, I abhor
confrontations. Thankfully the Lord has blessed me much not to have to repeat
that experience again to this day; but if I have to again, I will.
President Hinckley has said:
“In this world there are many who are unable to read or write. For them there
is little light of ages past, and only diminished knowledge of the vast and
intriguing world of the present. The darkness that surrounds them, the bleak
shadow of illiteracy, condemns them to poverty, hunger, and ignorance. Do
whatever you can to help them, whether they be in your home, neighborhood, or
across the world. Bring light into their lives by helping them learn to read.”
Indeed reading is the greatest skill that Ben can master at this time.
Repetition will bring fluency so we like to read the same books over and over
again. Incidentally children with autism like repetitive things so it fits.
Presently Ben is in sixth grade
at Robbinsdale Middle School in their special education program. He is doing
well there, his teacher is reporting progress but difficulty with retention. It
is a rather large class but there are a lot of aides at the ready and Ben has
enjoyed the association with his peers, there are lots of boys in his class
this year! They work on academics as well as hands-on and more practical tasks
this year, preparing them for a job-training type of setting later on.
My once non-verbal child
comes home talking about going to the “sensory room” –that’s a big word ☺– at
school, to do his occupational therapy but also to exercise! This helps him to
focus in between more academic tasks so he can perform better. He loves this
type of work, it centers him.
Ben still has a very long
road ahead, but it is not so bleak and overcast with stormy clouds ready to
burst at any time. We need to take it one step at a time, one school year at a
time and not make too many plans on the comet... Life is like that when we have
to deal with the unpredictability of autism. We never know what other curve the
road ahead might bend into. A lot of times we never see the curve approach
until we are half into it already, and we have no time to scream “Fasten your
seatbelt!” Life is like that with autism, keep your eyes on the road and never,
ever take your seatbelt off if you don’t want to be thrown out of the
vehicle...
Eighth Grade
January 2008 to May
2013
I cannot help but keep on
writing on this topic… I have to give more details about Ben’s last five and
half years in school. They have gone by so very fast and he has made so many
strides in his learning!
First, he remained at
Robbinsdale Middle School from 6th to 8th grade in Mrs.
Heidi Allen’s Special Ed classroom for three consecutive years. That was such a
blessing in and of itself, to preserve his routine for the longest time ever in
his life! He also really loved his aide, Sandy, what a dear lady! Heidi and
Sandy are truly among the earthly angels who have helped Ben along his mortal
journey! I used to go visit Heidi and Sandy when I worked at RMS even after Ben
had left their classroom… With them, he learned to read more and more, tie his
shoes better, be more independent, navigate the hallways of a big middle
school, eat lunch all by myself, tolerate to have his teeth brushed a bit
better, and other things I’m sure!
After “graduating” from
Middle School, he attended Cooper High School in New Hope, Minnesota for two
years. His teacher, Dorothy Dick Peterson was a 41 year special education
veteran. I think Ben was very intimidated by her. Her name could be used very
effectively around our home if he wasn’t acting as well as he should: “Do you want
me to tell Ms. Peterson?” That could stop him dead in his tracks! In truth she
was a very nice woman. Ben didn’t like school much those two years though, but
he made strides nonetheless.
Ben sees us all read
voraciously – remember we don’t have cable television -- so he loves to read
himself also, and although he can only read very basic books, it is a great
pleasure for him now!
The best part of his
Freshman and Sophomore years was the vocational program he was enrolled in.
Special Ed students at the high school have the chance to also attend a
vocational training program where they learn to work in a “factory” or “business”
type of setting. It has proven very valuable for Ben because he needs to be taught
very repetitively, and over long periods of time. So if he can have a chance at
any type of employment later on, training needs to happen now.
Now for his Junior year, he
attends yet another school because lo and behold the “powers that be”
decided that it would be in the best interest of students to move programs. Thank
goodness Ben is a lot more flexible nowadays… But really? Another move? What
irony… I am not going to even try to count how many moves and changes of
programs that makes for him in his school career… So much for consistency and
routine for children with autism ☺
You might have noticed that
I am not talking about therapy as much. That’s because Ben isn’t receiving as
much now that we have relocated to Minnesota. He does have speech therapy at
school, but it is very minimal and in a group setting. The district has also
deemed that occupational therapy is no longer necessary for him. Services have
been drastically cut for him. We certainly do not receive any home based
services anymore. Thank goodness he progressed so much and so well before we
left Pennsylvania ☺
Here in Minnesota we would
have had to choose between feeding our family and paying the mortgage or having
therapy for Ben. Guess what choice we made? We explored thoroughly all the
avenues Minnesota offers and it still is extraordinarily expensive to obtain
therapy for children with autism. So we have “made do” without. Our commercial
insurance company doesn’t cover for what Pennsylvania used to cover and that’s that.
Maybe it’ll change one day. But Ben is turning 18 soon so we will be out that
mess. (Well, until Social Security benefits run out that is!)
Do I think that Ben could
have made more progress in the six years that he has gone without heavy therapy?
Sure, but what could we have done? Gone bankrupt? Some people do… But we had
been blessed to get out of the horrid non-verbal, not potty trained years. So
that was enough for me. We just did the best we could with all the faith we
had.
I felt that it was time to
do something for the girls ♥
No comments :
Post a Comment