What about Dad?

What about Dad?

Having been a stay@home dad for our special needs sons for many years, I have a different perspective about autism dads, and (at the risk of appearing to be complaining, bemoaning my lot in life, searching for pity or attention, or feeling unappreciated by my own family, none of which are true) I believe it is time to begin recognizing and addressing the needs and contributions of autism dads.

Day after day on social media we see memes, links to mom-specific pages, t-shirt advertisements, and odes to the super-human moms of special needs children.

I get it.  

In most instances, it is the mom who spends the lioness’ share of the time with these children.  They need  interaction with other mothers, the time away to de-stress and regain some perspective, and frankly, at the risk of being accused of sexism or gender stereotyping, women tend to do a better job getting together to support each other than do men.  It is part of their nature.

Think about it.  

Compared to the number of organizations dedicated to supporting special needs moms, when was the last time you heard about organizations supporting the dads of special needs children?

When was the last time you saw a meme celebrating the importance of dads in raising special needs children?

How often are the efforts and contributions of dads in raising special needs children celebrated - or even just mentioned - publicly, as are those of moms?

You see, where society assumes that moms need support and encouragement (and rightfully so), it likewise assumes that fathers are these unmoved rocks who silently and solitarily soldier on, neither needing nor desiring the company and input of other men who are faced with the same battles.

In many respects, that is almost unavoidable.  Many dads are working during the day.  I can't begin to count the many times I took our sons to the playground during the day to find myself the sole father among dozens of mothers, being eyed suspiciously, and having no one with whom to interact because most of the other dads were working.  When dads get home at night, they attend to home and vehicle repairs, kids’ activities, or the need to give mom a break.  On top of that, what are most other dads doing? The same things.  Working during the day, trying to attend to family and projects at night.  

  

So getting together with other dads is incredibly difficult.

And because men are expected by society to be unmoved, unfeeling rocks, there are very few resources dedicated to supporting them.  Let’s face it, in recent years society has, in its ongoing war on masculinity, gone out of its way to de-value men in general, dads in particular.

It is time for this to change.

Although schedules make it difficult, as does the natural inclination of many men (reinforced by societal stereotypes about men) to tough out their circumstances by themselves, it is time for the creation of organizations that can address the needs of autism dads, that can help facilitate the camaraderie they need, and help them to understand that they are not alone in this battle for their children.  They have questions that need answers, they face battles for which they need resources, and they need to know that their contributions to raising special needs children are important and valued.  And at the end of the day, sometimes they, too, just need to get away for a while to unplug.

I have been blessed with a small group of men who, on several occasions, have gone out of their way to provide me with time to just be one of the guys – but not all men have been so blessed.  It is time for this to change.

So, with Father's Day approaching, what about dad?

My Personal Hypothesis...

I just posted this in response to another posting, and I feel the need to post it openly here as well.

I have my own hypothesis regarding the explosion in the incidence of autism, as of today now estimated by the CDC to be 1 in 59.

Autism has been around for generations.  The term was first used in 1911, but the incidence was historically very low. In the 1970s and '80s, the incidence of autism was roughly 1 in 2,000. But something happened around that time that appears to coincide with the explosion in the incidence of autism we have witnessed since then: the development and use of recombinant bovine growth hormone (RBGH). Development, marketing and use of RBGH went into overdrive during the 1970s and '80s in order to increase beef and milk production; an uncle of mine used it on his cattle farm before they really established guidelines about what would be considered "safe" dosages. If a little was good, then a lot of it must have been even better. It brought on earlier sexual maturity, meaning cows could begin breeding and calving at an earlier age, it increased milk production, and it enabled cattle to pack on muscle at an accelerated rate. The use of RBGH led to the development of the mega farms that have become so common - assembly line techniques applied to the beef and milk industries.

Only one small problem: while the FDA signed off on the use of RBGH, NO LONG TERM HUMAN SAFETY STUDIES WERE EVER CONDUCTED.

I believe that the overuse of growth hormones, particularly RBGH (recombinant bovine growth hormone), plays a major role in the widespread onset of autism, taking a condition that was once quite rare and turning it into the epidemic we are witnessing today. Moreover, I believe the effects are CUMULATIVE. Individually, each cow receives only small (microgram) dosages of RBGH. Multiplied over the millions of cows that receive it each year, however, that amount present in our food supply is magnified by many orders of magnitude. And this is on top of the hormones infants receive from their mothers and naturally produce in their own bodies as they ingest milk and other products derived from cattle. Science has confirmed that onset of puberty in humans has been accelerating over the years, now occurring in girls beginning at age 10 and in boys at about age 11. While many in the medical and scientific communities put this down to better nutrition, I believe the overuse of RBGH is ALSO having an effect. We administer it to animals (on top of what their own bodies already produce) in order to accelerate biological development. What if the increased amounts aren't being metabolized by cows as completely as they are supposed to and are instead passed on to humans through the milk we drink and the meat we eat? We would then be ingesting hormones on top of what our bodies already produce, resulting in hormone overloads that are passed from generation to generation - cumulatively.

I have suspected a link between RBGH and autism for many years, but what really solidified it in my mind was a conversation I had with a graduate of Michigan State's animal husbandry program. One of the things they study? The use of RBGH in cattle. As she and I conversed, I began to lay out my hypothesis; she immediately caught on to the direction I was going and broke in with information I did not previously have. She explained that, in addition to all the effects I listed earlier, RBGH was used to achieve another objective: making cows more docile and easier to handle. She explained that RBGH accelerates brain growth for the first 2-3 years - and then brings it to an abrupt standstill. In cows, this makes them docile and easier to handle. In humans, however, the results could be very different. I know that, in my own son, I watched impressive development for approximately the first two years of his life, at which time it all came to a screeching halt.

I fully understand that what I have is conjecture, but the overall effects and timing of those effects associated with the overuse of RBGH is too much for me to ignore.

The problem is this: IF scientists were to ever seriously study this potential link and establish its validity, they would refuse to do anything about it, because doing so would mean that our entire food processing and distribution system would have to be completely dismantled and rebuilt from top to bottom.

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