Why you need to put an introduction letter together for teachers.

[Guest guest]

As a parent

liaison in our local school district for special needs families one of the

first items I work with parents on in preparation of their IEP meeting is a

letter of introduction. The

letter of introduction helps the child’s

teachers/therapists to better understand how Down syndrome, Dyslexia, Cerebral

Palsy (any diagnosis) affects their child along with opening a line of

communication which is crucial. A mistake a lot of parents make is assuming

their teacher has been trained to work with their child's disability, and assuming

a teacher will know how to best work with their particular child. Each of our

children is different and a label doesn't tell a teacher what your child’s

particular issues are. This letter should give the teacher a little

history. I have found that when teachers/therapists have an idea of Sam’s

history they better appreciate the progress we have made. I also let them

know any pertinent health information and I let them know our hopes and dreams

for Sam. We all know that an IEP meeting can be difficult, emotional and

putting in writing those thoughts and feelings from your heart eliminates the

need to try to express these ideas during the meeting. The teachers,

therapists, administrators can read and understand your viewpoint.

Along

with this letter I usually include another document that describes in detail

Sam’s issues and how and what we have worked on. For Sam, this is

still a work in progress since he will be on medical leave until January but

please take a look at my blog and you will see my other son’s

introduction and informational document in regards to Dyslexia, ADHD and LD , www.suemayer-specialneedsmom.blogspot.com.

Here is Sam’s intro. letter:

Introduction of Sam Mayer

Sam was born on

Dec. 6, 2000 weighing a whopping 10 lb. 2 oz. and measuring 21” in

length. Sam was a day late and my delivery was induced due to back issues

I was having. At birth Sam’s Apgar was 8 but he was diagnosed with

Down syndrome and he required oxygen for 24 hours to help with the fact that he

had too many red blood cells. Sam was later diagnosed with an ASD heart

defect.

Unfortunately

Sam had many illnesses in his first year, most were respiratory in

nature. He had stopped breathing on numerous occasions, was admitted to

Children’s ICU and it was thought he suffered a brain injury due to

oxygen deprivation which left him weak on his right side. Sam had his tonsils

and adenoids removed at Children’s when he was 11 months old.

Sam’s immune system became compromised due to the number of antibiotics

required to offset his respiratory issues. Sam’s respiratory issues

brought on by illnesses have often caused him to go into respiratory

distress. Sam is still prone to illnesses such as croup and

pneumonia. While enrolled in preschool in Dec. of 2005 Sam came down with

croup which caused him to go into respiratory distress, after being transported

by ambulance to Children’s a doctor misdiagnosed him with asthma and

began administering that protocol. Sam’s heart rate and breathing

became erratic due to the protocol and he was transported to the ICU along with

the crash cart. After much pleading with the hospital the protocol was

changed and Sam began to improve and was discharged two days later. We

continued to try to figure out what was happening with Sam’s respiratory

system and through the help of Dr. Daiva, Sam’s pulmonologist, we have

learned that Sam’s issues are not with his lower airway, as is the case

with asthma, but instead Sam’s upper airway is what causes him to go into

distress. We have now figured out what medication works best for Sam

which is vaponephrine which can only be administered in a hospital setting in

the case of respiratory distress. We chose to limit his exposure to allow

further growth of the upper airways and we treat him with a short dose of oral

steroids at home when illness/breathing becomes an issue. We attempt to

limit the use of steroids/antibiotics due to the build-up of yeast in

Sam’s system and the fact that the steroids have a manic affect on

him. We also work on the yeast issue with supplementation and diet.

Sam was a happy

baby but made few sounds and he was unable to chew or drink liquids that were

not thickened. Sam had swallow studies and speech evaluations which

produced the diagnosis of dysphagia and apraxia. Sam was enrolled in 0-3

with Ozaukee Therapy. He began a home neurodevelopmental program when he

was 18 months old through NACD (www.nacd.org).

Although the prognosis given by Children’s Hospital in his first year was

bleak, through NACD Sam surpassed all of their expectations by the time he was

three. We now consider his potential unknown and basically the sky is the

limit on what he will be able to accomplish. Through his home program and

his various therapies Sam overcame his right side weakness and was walking at

the age of three, he now runs faster than me and has a beautiful cross pattern

in walking, running and doing steps. He still needs to be cued to use his

right side when coming down the steps. At age 3 Sam was fully potty

trained, even through the night. He began to read at age 3, although he

had little to no speech, we used his reading to help facilitate his

speech.

Both NACD and I

felt Sam could not hear well, but he passed his ABR and had few ear

infections. Sam at eight is reading at a 2nd grade 7th month

level and continues to have a love/hate relationship with counting and

math. Sam’s speech is by far his biggest delay. I continued

for the last three years to try to get Sam’s hearing properly evaluated

and addressed, my gut feel just kept telling me that hearing was an

issue. Sam did not behave well in hearing tests but now being older and

more mature was able to get through a hearing evaluation and it was determined

that he had a bi-lateral conductive hearing loss in both ears but the right ear

was worse than the left. Sam now wears a bone conduction hearing aid on

his hat and has now passed the test with the same curve but in the normal

range. My prayers have been answered, but I want to help him talk and

become a talker.

Sam has speech

but much of it is has been learned by his reading versus his hearing. Sam

learned how to talk through his reading and we also worked a great deal on oral

motor and how to form sounds. Sam had little to no lip involvement when

we started but he has improved in this area. We worked on strengthening

his jaw with bite blocks and retracting his tongue with straws and other

exercises. Sam had to protrude his tongue in his first year to breathe,

so we had a learned pattern and a large tongue to work with. Sam has had

swallow and sleep studies, upper GI’s, bronchioscopes and other procedures

at Children’s.

With the hearing

aid Sam is beginning to have some spontaneous speech (HALLELUJAH)! He

still likes to name things and I would like help figuring out how to increase

his speech into conversational speech and to get his speech clearer so he is

easier understood. Sam is currently homeschooled through his NACD

program, but we hope to change that in Fall. Sam is a one on one kid, his

favorite word is “NO”, so don’t ask him a lot of questions

because I can tell you the answer unless it is in regard to food or something

he is really interested in. As parents we just want to see Sam reach his

full potential and be happy. He has shown us how smart he is but like my

older son he just learns differently. We want him to be able to

communicate to the best of his ability. He is an absolute joy in our

lives and he has made us raise our expectations of him time and time

again. He is processing at a four but likes to hang on to his 3

behavior. He understands time out and the loss of privileges. His

best attempts at communication happen within his family. I think he feels

insecure that others will not understand him so he often chooses not to speak

to other people. He is known to say “Hello” and “Good

Bye”, a man of few words.

Sam is on the

SCD diet to help with his respiratory and immune system issues. He is non

dairy and does not have white or wheat flour or white sugar. His diet

mainly consists of good organic protein (meat, eggs…)no nitrates, minimal

processing, fresh fruit and vegetables. His favorite treat is Rice Dream

Ice Cream, a diet carbonated green tea drink (which we use to substitute for

diet soda) but he does love diet soda (we just try to limit the amount).

His favorite snack fruit is grapes, favorite vegetable is carrots.

We would like to

bring Sam into school when he gets the okay from his pulmonologist and start

slow. Our hope is to work up to half days in the afternoon. I will

continue to work with him one on one in the morning with his home

program. I would like to work with the school on academics but my main

interest is having Sam work with people other than Mom, working on his

conversational speech, working within a group, getting used to the school

structure, working as a team to help meet goals for Sam. We have a behavior

strategy in place at home and this can also be used in school. He’s

a great kid but he like my older son loves to have one on one communication,

works best on things that interest him and is happy to get out of anything he

can that he perceives is not going to be fun or of interest. Sam amazes

me by his ability to do puzzles, how if taught in his learning style he can

grasp and often surpass my expectations.

Sam comes with a

lot of labels but when you get to know Sam you see a kid with a great

personality, an amazing smile and laugh, a boy that will amaze you and yet

challenge you. As Sam’s parents he has required us to learn more

than I ever thought we could, to be creative in how we work and play with him,

to challenge us to have the same persistence that he has, to slow down, to

think outside the box and to never say never. Our dreams for Sam were

once shattered by his multiple diagnosis but now he has taught us to dream new

dreams and to never limit his experiences but instead to embrace what and how

he goes through life.

We look forward

to meeting and working with you.

Jeff & Sue

Mayer

Sue

Mayer

Mom

to Sam (8) with Down syndrome, Brain Injury, Apraxia, Dysphagia,

Respiratory/Immune Issues and Bi-Lateral Conductive Hearing Loss or as I like

to say “Yada, Yada,Yada”

www.suemayer-specialneedsmom.blogspot.com