National Sanctity of Human Life Day 2018

Your Special Needs Child In Michigan Public Schools....

Special needs parents: your public school will probably not tell you what I am about to pass on to you.  I speak from first-hand experience.

When our son, Robert, "completed" his high school education using a modified curriculum in the ASD program, he was "graduated" with a certificate of completion in lieu of a high school diploma and immediately shifted to a vocational training program for special needs adults.  We were told that he would not be eligible for an adult education GED prep program until he turned 21; in fact, the dean of students tried to dissuade us from pursuing a GED on the grounds that the exam would be "too difficult" for our son.  We were further informed that, if Robert was to remain eligible for services, his ONLY option was to enroll in the special needs vocational training program offered through GRPS; anything else would render him ineligible for services upon his graduation.

As it turns out, these were all LIES.

Over the past few weeks, after being led by the Lord to write to Lt. Gov. Brian Calley to ask for his intervention (he has a daughter with autism, and has a reputation as a special needs advocate), I have been put in touch with individuals within the Michigan Department of Education, and the information with which they have provided me has been eye-opening.

Without going into any details regarding our developing plans or what we hope to accomplish, I want to pass some of this information on to you.

First, under Michigan Administrative Rules for Special Education (MARSE) With Related IDEA Federal Regulations [MARSE (October 2015), IDEA Federal Regulations (July 2010)], if you have a child enrolled in a public high school, they have not yet achieved their high school diploma, and they have an active IEP, they can remain enrolled in the public school (yes - in the HIGH SCHOOL!), continue to receive services, and continue to work toward their diploma until they are 26:

"MARSE R 340.1702 “Student with a disability” defined. Rule 2."Student with a disability" means a person who has been evaluated according to the individuals with disabilities education act and these rules, and is determined by an individualized education program team, an individualized family service plan team, or an administrative law judge to have 1 or more of the impairments specified in this part that necessitates special education or related services, or both, who is not more than 25 years of age as of September 1 of the school year of enrollment, and who has not graduated from high school. A student who reaches the age of 26 years after September 1 is a "student with a disability" and entitled to continue a special education program or service until the end of that school year."

“MARSE R 340.1733 Program and service requirements. Rule 33. (e)  The age span for students who are assigned to special education programs, except for programs for students with severe cognitive impairment and severe multiple impairments, operated in secondary buildings attended by students who are nondisabled, shall not exceed, at any 1 time, the age span of the students who are nondisabled in the building, except in high school buildings where students up to 26 years of age may be served....” 

Do everything you can to keep an active IEP in place! It is the key to continuing services.

Second, it is the RIGHT of a special needs student who is capable of doing so to work toward a bona-fide high school diploma.  Schools began issuing “certificates of completion” to special needs students in lieu of diplomas after the parents of neuro-typical students began to complain that it wasn’t fair that a special needs student received the same diploma as a neuro-typical student when their coursework was modified.  Your special needs student has the right to REMAIN ENROLLED in their high school to work toward their diploma, as long as they have an active IEP, until they turn 26.  We didn’t know that Robert had that right when we went into his exit IEP, and the school never disclosed that fact; the school wanted to get these special needs students off their hands, so we were never informed about this option.  They cannot force you to accept a certificate of completion and place your child into an alternative program.  Once you have accepted the certificate option and your child has been “graduated”, there is little chance of re-enrolling them back into high school.

Third, your special needs student is eligible to be enrolled in adult public education to pursue a GED IMMEDIATELY upon being graduated from high school, if you choose to go the certificate of completion route; your child does not have to wait until they turn 21, as we were told by representatives of Grand Rapids Public Schools. As was pointed out to me today, however, most of these programs are general education in nature, not geared toward special needs students.  It appears that very few school districts offer a GED preparatory class geared towards special needs students, but this is still an option.

If you have a special needs child who wants to work toward a GED, Michigan Rehabilitation Services (MRS) may be the organization to call.  In many instances, they can assist in connecting your child and family with an array of fully funded evaluations and services that will help them achieve their educational, independence, and employment goals.  Their number is: 877-901-7365.

Note: this note will likely be something of a work in progress, with updates being offered as we learn more.

A New Chapter….

This week is a bittersweet one for us.  

RJ begins his last full week as a high schooler. 

We have seen, with God's help, our son, who, until about 6 years ago (he barely slipped under the wire for his clinical trial, being enrolled just a few months before turning twelve - the cutoff age), was largely non-communicative, engaged in very stereotypical autistic behaviors, had an incredibly limited diet, and whose sensitivity to noise and activity necessitated ear muffs whenever we went out in public, become a mature, expressive, and engaging young man who craves communication and relationship with others, whose grades have improved to the point that he has been on the honor roll and dean's list, who lettered in competitive swimming, and who eats like a horse. He loves God, and loves reading his Bible.  

Yes, he still has significant challenges in his life that will make achieving his desire to attend college and work on the railroad difficult, but with God's help we look forward to his future. I don't profess to know or understand why God has allowed this to happen, and to be completely honest I don't always handle it well, but I cling to the words of Jesus in John 9:3, that it has happened "...that the works of God might be displayed in him."

RJ, I am more proud of you than I can adequately express. I love you.

And a song of hope for all those special needs families who are already in the fight, those who are just receiving the news for the first time - and those who love and support them:

Preparing For The I.E.P. (Individualized Education Program)….

The I.E.P., believe it or not, is your friend.

It may feel like you and your child are under the microscope, but the truth of the matter is that the I.E.P. exists to protect the educational interests of your child.

The I.E.P. is written to lay out the needs of your child, and to determine the best method to meet those needs.  Understand, the I.E.P., mandated by the Individuals With Disabilities Act, is a LEGALLY BINDING DOCUMENT that determines how the schools must accommodate your child, what services must be offered depending on the diagnosis, and how those services must be administered.

This is, under ideal conditions, a cooperative effort including you as the parent, your child's teacher(s), and members of the school district's special education department. It is your opportunity to express your concerns, to brainstorm with educators, to put together a program that gives your child the best opportunity to learn.

It is also your means of holding the school accountable if they fall short of their legal obligations as outlined in the I.E.P.  As I said, this is a legally-binding document, a contract between you and the district.  While I can say that most of the I.E.P. meetings in which we participated over the years were productive and amiable, there were others that went the other direction.  One teacher's refusal to honor the I.E.P. resulted in her "early retirement".  No one likes those kinds of meetings, but they are occasionally necessary to protect your child's educational interests.  

What is important to bear in mind is that, while the goal is to form a partnership with the school, in the end YOU have to take charge.  

YOU know your child's needs. 

YOU know how to best communicate with YOUR child. 

YOU are THE advocate for your child.

Don't let anyone tell you otherwise.

Dealing With Sensory Issues….

It IS going to happen.

Bank on it.

The fidgeting, the problems with fabric next to their skin, getting them to calm down.  We dealt with all of these issues with R.J.  To some degree, we still do.

In many instances, the older children get, the more likely they are to outgrow these issues to some degree or develop their own coping mechanisms.  But in the meantime, how do you steady down this child?

The answer for most is sensory diet.

Sensory diet is a series of activities that provide an ASD child/young person with the sensory input they need to deal with the stresses of the day.  

We utilized several activities that helped R.J. calm down and focus.   Light brushing with dry surgical scrub brushes (NOT the brushes pre-loaded with beta dyne or iodine), back scratching or rubs, bouncing on a large exercise ball, even bear hugs - "big squeezes" - were all successfully employed; even at age 17, big squeezes from dad are still a favorite source of input.  

When the problem became sitting still for an extended period of time, we found that exercise ball chairs worked beautifully.

These are kids who need input.  They have no sense of where they are in time and space (proprioception), as difficult a concept as that may be to grasp, so they need input that helps them to make that connection and promotes appropriate self-awareness.

Finding the right combination involves a LOT of experimentation, but thankfully, resources are available on the internet to provide YOU with necessary input as well.  Here is one such source:

Sensory Diet Activities

When They Don't Act The Way Everyone Else Thinks They Should...

No, this isn't going to be about meltdowns, stimming, or any of the other stereotypical behaviors associated with autism.

This is about how people respond, or, rather, react, when a special needs person fails to stay in the background "where they belong."

You see, and what I am about to say will be considered heresy by many autism activists who want us to  believe that autism is perfectly normal, there is a perfectly normal teenager trapped inside an autistic body.

He has the same hopes and dreams that most other teenagers have:

He wants to go to college.

He wants to move out on his own one day.

He would love to be on the US Olympic swimming team.

He wants to be a train engineer.

He wants a girlfriend.

Many people, however, don't see that.  They see an autistic young man, and that means they have certain expectations of how he will act - the place they expect him to occupy in the pecking order.

They don't understand, and maybe they don't WANT to understand, that he is is trying to be normal.  They don't know that he has gone from being essentially nonverbal, not caring whether he ever interacted with others, to desiring relationships with others.  They don't know that his art has been displayed during a local art show.  They don't know that he is the first autistic young person to swim on his high school swim team.

He takes many of his cues socially from the young people around him, but he doesn't understand that much of what he sees is determined by context.  He sees friends, boyfriends and girlfriends, following each other around, waiting for each other when they leave the room, waiting outside the door when they go to class or the restroom.  He sees them holding hands, or putting their arms around their boyfriend or girlfriend.  He wants to initiate conversations with members of the opposite sex.

But instead of understanding, because he isn't conforming to their ideas regarding how he should act in a social setting, it throws them off, even scares some people.

Which is too bad.

They have no idea what they are missing out on, they don't realize the opportunity they have to build into his life - an opportunity to truly impact his life, to help him become as normal as possible.  And what is TRULY sad is how the young people of the church, the people who are called to show the compassion of Jesus the Christ, are some of the worst offenders.

God help us.  

Father, forgive them.  The have no idea what they are doing.

To Sleep, Perchance To Dream….

Getting R.J. to sleep was a major undertaking for longer than we care to remember.  There were far too many nights during which he went to sleep at 1:00 or 2:00 in the morning, just to wake up an hour or two later, ready to go again.  Then we discovered that he would go to sleep while riding in the car, so we made use of THAT at times, as well.

There were too many days during which I dragged into work having only had one or two hours of sleep after driving around town to get R.J. to go to sleep.

It was brutal.

This is one of those autism issues for which I have never seen a good explanation (I will update this posting if I ever come across one).

But there IS hope.

The problem is establishing a sleep cycle for the child that is consistent.

But how do you do that for a child that refuses to tire out?

A naturopath told us about melatonin.

Melatonin is a hormone that is naturally produced by the body.  It helps regulate other hormones in the body, and also helps regulate the sleep cycle.  The root of the problem seems to be that the bodies of many persons with autism do not produce enough serotonin, the precursor for melatonin.  Not enough serotonin means not enough melatonin is produced, which equals not enough sleep.  And while there are ways to stimulate the production of serotonin,  the problem is getting it through the brain/blood barrier so that melatonin can be produced.  More times than not, the body syphons off the available serotonin for other functions.

The solution for many, then, is to use a melatonin supplement.

We began using a sublingual liquid melatonin supplement that was easily purchased at our local health food store. It is classified as a food supplement.

It was a God-send.

Using melatonin, we were finally able to establish a relatively normal sleep cycle for R.J. until his own body finally began producing it in quantities sufficient to continue his sleep cycle.  As a rule, he begins to get sleepy within twenty to thirty minutes after taking melatonin, and generally sleeps for six to eight hours thereafter.  He appears to be refreshed upon waking.  Occasionally, he still needs to take melatonin, but that tends to be infrequently these days.

An alternative to melatonin is valerian, a root that has been used for hundreds of years to address both sleep and anxiety issues, so if your child experiences high anxiety, valerian might be something to check out as well.  Like melatonin, it is available as a food supplement from many health food stores.  It works in a different manner than melatonin, but the end result appears to be much the same - rest.

And mom and dad get to sleep as well.