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.
Sunday, August 16, 2015
Monday, May 18, 2015
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.
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.
Thursday, April 2, 2015
Friday, March 27, 2015
Gluten Free Is NOT Just A Fad….
For many autistic families, meltdowns are a constant problem. They occur at some of the most embarrassing of moments - while out shopping, during the church service, at the park, you name it, no event is off-limits to a meltdown.
I speak from very real experience.
The problem is, most autistic families simply accept these as a fact of life.
I want to offer a word of hope: in many instances, while meltdowns may not completely be eradicated, they can be moderated by doing just one thing.
And, no, it isn't an easy thing.
Removing gluten and casein from their diets.
What are they?
Gluten is the protein in wheat and some other grains, including barley and rye, that gives structure and elasticity to breads and other baked goods.
Casein is a chemically similar protein that comprises 80% of the proteins in cow's milk and up to 45% of the proteins in human milk (http://en.wikipedia.org/wiki/Casein). Since it is chemically similar to gluten, it can trigger similar reactions when ingested.
For reasons for which I have yet to find a suitable explanation, gluten and casein are not well-tolerated by many with autism.
In fact, they can set off terrible meltdowns.
Giving foods containing gluten, wheat, and milk to a person with autism can be like giving speed to an addict. In the best cases, it merely charges up the child with a surfeit of energy, causing them to bounce off the walls for the next hour or so. In the worst cases, children turn into gremlins, screaming, fighting, obstinate, oppositional.
You see, what many doctors still refuse to accept is that an allergic reaction to food isn't ALWAYS anaphylactic. In many instances, it is BEHAVIORAL.
We saw what happened to RJ when he ate foods containing these proteins. We also see how many kids with autism love to absolutely gorge themselves on foods containing these proteins.
But many parents haven't made the connection - or refuse to make the connection.
Why?
While it may be eminently beneficial to their child, specifically, and the family, generally, it takes WORK - lots of it - to go gluten free.
And it isn't cheap, either.
It means carefully reading labels for even the slightest hint of gluten and casein.
It means learning to cook using alternate grains and milks.
It oftentimes means bringing alternate foods along when going out to eat.
It takes work.
But seeing one's child begin to calm down is worth it.
It takes time.
As a rule, it is recommended that you remove gluten and casein from a child's diet for a minimum of six week to see if there is any change. And those can be six VERY LONG weeks. In many instances, the behavior will get worse as the toxins are removed from the body and the child goes through withdrawal.
But it is worth it.
The changes in RJ were significant, easing life for him AND for us.
Over time, you may discover that it is possible to allow your child to indulge in foods containing gluten and casein occasionally by first giving them digestive enzymes such as Glutenease (Enzymedica) or AFP Peptizyde (Houston Nutraceuticals). These enzymes wait in the stomach for gluten and casein, breaking them down before entering the digestive tract, so that the body no longer recognizes them as allergens. It allows the child to enjoy the food without causing an allergic reaction, allows them to reap the nutritional benefits of the food, and then, because the enzymes are derived from foods themselves, the body digests the enzymes.
Do yourself a favor: give SERIOUS thought to beginning your child on a GFCF (Gluten-free/Casein-Free) diet.
I speak from very real experience.
The problem is, most autistic families simply accept these as a fact of life.
I want to offer a word of hope: in many instances, while meltdowns may not completely be eradicated, they can be moderated by doing just one thing.
And, no, it isn't an easy thing.
Removing gluten and casein from their diets.
What are they?
Gluten is the protein in wheat and some other grains, including barley and rye, that gives structure and elasticity to breads and other baked goods.
Casein is a chemically similar protein that comprises 80% of the proteins in cow's milk and up to 45% of the proteins in human milk (http://en.wikipedia.org/wiki/Casein). Since it is chemically similar to gluten, it can trigger similar reactions when ingested.
For reasons for which I have yet to find a suitable explanation, gluten and casein are not well-tolerated by many with autism.
In fact, they can set off terrible meltdowns.
Giving foods containing gluten, wheat, and milk to a person with autism can be like giving speed to an addict. In the best cases, it merely charges up the child with a surfeit of energy, causing them to bounce off the walls for the next hour or so. In the worst cases, children turn into gremlins, screaming, fighting, obstinate, oppositional.
You see, what many doctors still refuse to accept is that an allergic reaction to food isn't ALWAYS anaphylactic. In many instances, it is BEHAVIORAL.
We saw what happened to RJ when he ate foods containing these proteins. We also see how many kids with autism love to absolutely gorge themselves on foods containing these proteins.
But many parents haven't made the connection - or refuse to make the connection.
Why?
While it may be eminently beneficial to their child, specifically, and the family, generally, it takes WORK - lots of it - to go gluten free.
And it isn't cheap, either.
It means carefully reading labels for even the slightest hint of gluten and casein.
It means learning to cook using alternate grains and milks.
It oftentimes means bringing alternate foods along when going out to eat.
It takes work.
But seeing one's child begin to calm down is worth it.
It takes time.
As a rule, it is recommended that you remove gluten and casein from a child's diet for a minimum of six week to see if there is any change. And those can be six VERY LONG weeks. In many instances, the behavior will get worse as the toxins are removed from the body and the child goes through withdrawal.
But it is worth it.
The changes in RJ were significant, easing life for him AND for us.
Over time, you may discover that it is possible to allow your child to indulge in foods containing gluten and casein occasionally by first giving them digestive enzymes such as Glutenease (Enzymedica) or AFP Peptizyde (Houston Nutraceuticals). These enzymes wait in the stomach for gluten and casein, breaking them down before entering the digestive tract, so that the body no longer recognizes them as allergens. It allows the child to enjoy the food without causing an allergic reaction, allows them to reap the nutritional benefits of the food, and then, because the enzymes are derived from foods themselves, the body digests the enzymes.
Do yourself a favor: give SERIOUS thought to beginning your child on a GFCF (Gluten-free/Casein-Free) diet.
Friday, March 20, 2015
A Brief Theology of Disability….
In all ages and all cultures, INCLUDING, SADLY, many churches, the disabled have been reviled. Generally, the grounds for revulsion are based on the notion that all seeming imperfections are the result of sin, and are therefore evidence of the judgement of God - either on the disabled person, or their family.
And yet, we have to ask the question, is this really always the case?
We come by this notion naturally enough.
According to the Bible, we are created in the image of God:
And to Adam he said,
But not everything.
I am going to say at this juncture that I do not claim to understand everything God has in mind for each of us. In what I am about to say, I neither attempt to explain God's designs, nor do I apologize for God.
I simply offer what God says about Himself in His Word.
The rest is up to Him.
In Exodus, God records a conversation he had with Moses. He called Moses to lead His people, the Jews, out of their captivity in Egypt. Moses, however, questioned whether that was God's best decision:
In this exchange, God had a perfect opportunity to explain to Moses how disability was the result of sin, to let Himself off the hook. Instead, God unhesitatingly takes full responsibility for creating people with disabilities.
I created them that way.
But WHY?
That is the question that haunts so many - and a question with which I continue to struggle.
There are days when I accept this teaching readily, but then there are the other ones, the days when I rage against God's decision to create RJ with autism. I hear RJ's aspirations - he wants to go to college, he wants be a train engineer, he wants a wife and children of his own in a home of his own - and then I observe his frustrations at the limitations that have been placed on his life, limitations that threaten to completely derail his aspirations, and my heart is torn apart.
So, WHY?
John 9 gives us the answer.
It gives us the account of a man who had been born blind, who spent his life as a beggar as a result. And the disciples of Jesus, the giants of theology that they were at this point in their training, asked the same question that is still asked today:
Jesus, this man is disabled. Surely the fallenness of man accounts for this, right?
Once again, God has a perfect opportunity to confirm their assumption, to let Himself off the hook.
And once again, He firmly sets the hook.
But why? Wouldn't it be more to your glory if you had created this person without their disability?
No.
For reasons you will probably never understand during your time here on earth, I will be glorified through the disability of this person.
God created, and this person was born with a disability. And for reasons we will probably never understand during this lifetime, God somehow will glorify Himself through it.
I don't know everything God is going to do to glorify Himself through RJ. We have already seen wonderful progress in his development, progressing from a child who was essentially non-verbal to an intelligent, affectionate adult who swam on his high school swim team - the first autistic swimmer in the league’s history. At the age of 15 we saw God reach through RJ's autism to bring him to Himself in salvation. Big limitations still exist, but we know more progress is on the horizon.
And we still pray for his healing.
I had a dream several years ago. Whether it is from God or just my own wishful thinking remains to be seen.
I am standing before the church of which I am a member on a Sunday morning, reintroducing my son to the congregation. "Brothers and Sisters, you have known my son as an autistic person, but God has chosen to bring complete healing to RJ - not because we are somehow worthy of a miracle, but for the glory of His name. This morning I want to reintroduce my son to you, your brother in Christ, healed of his autism."
As hard as it is for me to say, God, YOUR CHOICE, for YOUR glory - either way.
Lord, I believe. Please help my unbelief.
And yet, we have to ask the question, is this really always the case?
We come by this notion naturally enough.
According to the Bible, we are created in the image of God:
Then God said, “Let us make man in our image, after our likeness. And let them have dominion over the fish of the sea and over the birds of the heavens and over the livestock and over all the earth and over every creeping thing that creeps on the earth.”
So God created man in his own image,Being created in the image of God, we have an innate understanding that things here on earth are not as they were intended to be. The reason for that can generally be explained by the Biblical teaching regarding man's fall from God's favor:
in the image of God he created him;
male and female he created them.
Genesis 1:26-27, ESV
To the woman he said,
“I will surely multiply your pain in childbearing;
in pain you shall bring forth children.
Your desire shall be for your husband,
and he shall rule over you.”
in pain you shall bring forth children.
Your desire shall be for your husband,
and he shall rule over you.”
And to Adam he said,
“Because you have listened to the voice of your wife
and have eaten of the tree
of which I commanded you,
‘You shall not eat of it,’
cursed is the ground because of you;
in pain you shall eat of it all the days of your life;
thorns and thistles it shall bring forth for you;
and you shall eat the plants of the field.
By the sweat of your face
you shall eat bread,
till you return to the ground,
for out of it you were taken;
for you are dust,
and to dust you shall return.”
and have eaten of the tree
of which I commanded you,
‘You shall not eat of it,’
cursed is the ground because of you;
in pain you shall eat of it all the days of your life;
thorns and thistles it shall bring forth for you;
and you shall eat the plants of the field.
By the sweat of your face
you shall eat bread,
till you return to the ground,
for out of it you were taken;
for you are dust,
and to dust you shall return.”
Genesis 3:16-19, ESV
Therefore, just as sin came into the world through one man, and death through sin, and so death spread to all men because all sinned…
Romans 5:12, ESV
It is indisputable that we live in a corrupted world as a result of sin. Despite the teachings of some that man is inherently good, the Bible and empirical observation both give us overwhelming evidence to the contrary. The teaching of sin accounts for much, even regarding disability and sickness.
But not everything.
I am going to say at this juncture that I do not claim to understand everything God has in mind for each of us. In what I am about to say, I neither attempt to explain God's designs, nor do I apologize for God.
I simply offer what God says about Himself in His Word.
The rest is up to Him.
In Exodus, God records a conversation he had with Moses. He called Moses to lead His people, the Jews, out of their captivity in Egypt. Moses, however, questioned whether that was God's best decision:
But Moses said to the LORD, “Oh, my Lord, I am not eloquent, either in the past or since you have spoken to your servant, but I am slow of speech and of tongue.” Then the LORD said to him, “Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?Conventional knowledge attributes all disability directly to sin, yet God explicitly refutes this. He asks and answers His own question: who made man with his limitations? I DID.
Exodus 4:10-11, ESV
In this exchange, God had a perfect opportunity to explain to Moses how disability was the result of sin, to let Himself off the hook. Instead, God unhesitatingly takes full responsibility for creating people with disabilities.
I created them that way.
But WHY?
That is the question that haunts so many - and a question with which I continue to struggle.
There are days when I accept this teaching readily, but then there are the other ones, the days when I rage against God's decision to create RJ with autism. I hear RJ's aspirations - he wants to go to college, he wants be a train engineer, he wants a wife and children of his own in a home of his own - and then I observe his frustrations at the limitations that have been placed on his life, limitations that threaten to completely derail his aspirations, and my heart is torn apart.
So, WHY?
John 9 gives us the answer.
It gives us the account of a man who had been born blind, who spent his life as a beggar as a result. And the disciples of Jesus, the giants of theology that they were at this point in their training, asked the same question that is still asked today:
There is that assumption again.“Rabbi, who sinned, this man or his parents, that he was born blind?”John 9:2, ESV
Jesus, this man is disabled. Surely the fallenness of man accounts for this, right?
Once again, God has a perfect opportunity to confirm their assumption, to let Himself off the hook.
And once again, He firmly sets the hook.
“It was not that this man sinned, or his parents, but that the works of God might be displayed in him.I did it.
John 9:3, ESV
But why? Wouldn't it be more to your glory if you had created this person without their disability?
No.
For reasons you will probably never understand during your time here on earth, I will be glorified through the disability of this person.
God created, and this person was born with a disability. And for reasons we will probably never understand during this lifetime, God somehow will glorify Himself through it.
I don't know everything God is going to do to glorify Himself through RJ. We have already seen wonderful progress in his development, progressing from a child who was essentially non-verbal to an intelligent, affectionate adult who swam on his high school swim team - the first autistic swimmer in the league’s history. At the age of 15 we saw God reach through RJ's autism to bring him to Himself in salvation. Big limitations still exist, but we know more progress is on the horizon.
And we still pray for his healing.
I had a dream several years ago. Whether it is from God or just my own wishful thinking remains to be seen.
I am standing before the church of which I am a member on a Sunday morning, reintroducing my son to the congregation. "Brothers and Sisters, you have known my son as an autistic person, but God has chosen to bring complete healing to RJ - not because we are somehow worthy of a miracle, but for the glory of His name. This morning I want to reintroduce my son to you, your brother in Christ, healed of his autism."
As hard as it is for me to say, God, YOUR CHOICE, for YOUR glory - either way.
Lord, I believe. Please help my unbelief.
Wednesday, March 18, 2015
Opening Up A Bottle...
Raising a special needs child is not for the faint-of-heart. While there are entire agencies, governmental and non-governmental, tasked with watching out for the best interests of special needs individuals, in the final analysis, no one can advocate for your child like you.
Raising any child requires vigilance, but raising a special needs child takes that vigilance to an entirely new level.
Schools, doctors, businesses, churches, the government, all approach special needs children from different angles, based upon their differing assumptions, and while all will claim to have the best interests of your child at heart, the uncomfortable truth is that their own interests come first.
You see, society in general has gone through a major shift in acknowledging and dealing with special needs individuals over the last fifty or so years in particular.
Once upon a time, such individuals were quietly made to disappear into institutions where many, perceived to be something less than fully human, received inhumane treatment and were subjected to experimentation. Maybe they were visited by family members; in many instances, they were simply forgotten, the institution relieving families of the embarrassment of having to publicly acknowledge the imperfection in their bloodline.
Things have improved greatly since then, but accommodating individuals with special needs continues to be seen as a burden by many of society's institutions.
For businesses and government offices, this entails costly changes to facilities and training employees to handle situations involving special needs individuals appropriately, with dignity.
For schools, this entails the development of I.E.P.s (Individualized Education Plans) for each special needs student, specialized facilities, and additional support personnel.
For churches, this means re-thinking their theology regarding the origin of disability (there will be a future post addressing this particular issue), as well as determining how to best minister to these individuals and their families.
For doctors, it means realizing and acknowledging that they DON'T have all the answers. It means knowing what they don't know, and taking the time to rectify those deficiencies in their medical knowledge.
Some individual entities truly make an effort to understand and accommodate special needs individuals.
And then there are the others.
I was raised to be diplomatic, so this lesson has come quite hard for me. I tend to give people a lot of chances, try to reason with them. In most instances, that approach has served me well.
But when it doesn't, there is only one thing you can do.
Go in to that meeting loaded for bear.
I have had more than my share of meetings during which things got very heated. As a parent advocating for my child, it is my responsibility - my obligation - to hold the feet of teachers, doctors, businesses, etc., to the fire.
One teacher refused to honor the terms of our son's I.E.P (a legally-binding document governing the education of one's special needs child); after repeated meetings with her, we began pursuing appeals further up the chain. She was eventually let go because she refused to abide by the terms of the I.E.P.
In another instance, while pursuing alternative medical treatments for RJ's autism, our pediatrician put us on notice that she, as an M.D., disagreed with the alternative treatments we were researching (the other doctor was a D.O.). She advised us that, if we continued to pursue alternative treatments, she would no longer care for our son. Now, we had kept her apprised of everything we had done, including providing her with comprehensive notes. I reminded her that we have a right to pursue second opinions and alternative treatments. "Yes, that's true. But the moment you choose to act on them, I can no longer be part of your son's treatment." We had a sharp discussion regarding her approach to treating autism, during which she informed me that, "I am comfortable that I am up on autism in the traditional sense." I replied, "That's the problem; you have limited yourself to traditional thinking. If you can't medicate it or operate on it, your response is, 'there is no cure; go home and deal with it.' We need a doctor who can think outside the box, because I refuse to believe there is no cure for autism." We left her practice and found a doctor with whom we can work.
Businesses are not exempt, either. The Civil Rights Act, the federal Americans with Disabilities Act (ADA) and most state laws very clearly delineate how businesses must accommodate persons with disabilities, yet problems still exist.
Several years ago, we visited a Michigan zoo for RJ's birthday. RJ has an autism assistance dog, a service dog specially trained to keep him safe by insuring that he doesn't bolt when out in public. The ADA and Michigan law very clearly state than a service dog may not be denied entry to any business, yet the gate employee would not allow us in with our service dog - despite being shown a copy of the law. Advocacy in this instance took the form of contacting legislators, local news outlets and the threat of legal action - a step that I take very seriously and use in the rarest of situations. Within a few days of the incident, the zoo responded, apologizing for the incident, retraining their staff, and inviting us back for a visit that included behind the scenes access and an opportunity for RJ to feed their rhinos.
While most incidents requiring advocacy for our son have been accomplished amicably, that hasn't always been the case. Advocating for your special needs child isn't always a pleasant experience. But you as parents are their best advocates.
I vividly remember a phone call I received from one of our friends, the mother of an autistic child. She was angry because a teacher refused to honor the I.E.P. of her son in ways that bordered on abusive. I allowed her to vent for ten or 15 minutes, at which time, emotionally drained, she said, "I just don't know what to do." I assured her that she did. She had already set up a meeting with the teacher, but she just wasn't sure how to go into the meeting. She felt that she was entering a meeting with the odds stacked against her, that it was going to be her versus several administrators and the recalcitrant teacher. I reminded her of the anger she had just expressed to me on the phone and advised her, "You need to bottle that anger, go into that meeting knowing what your son needs, and open up that bottle on them!"
You, and you alone, are the best advocate for your special needs child. Despite what the system wants you to believe, YOU know better than their so-called "experts" - most of whom have never actually raised a special needs child themselves.
Work with them.
Communicate with them regularly.
Stay on top of them.
Hold their feet to the fire.
And yes, when the situation calls for it, open that bottle on them.
Raising any child requires vigilance, but raising a special needs child takes that vigilance to an entirely new level.
Schools, doctors, businesses, churches, the government, all approach special needs children from different angles, based upon their differing assumptions, and while all will claim to have the best interests of your child at heart, the uncomfortable truth is that their own interests come first.
You see, society in general has gone through a major shift in acknowledging and dealing with special needs individuals over the last fifty or so years in particular.
Once upon a time, such individuals were quietly made to disappear into institutions where many, perceived to be something less than fully human, received inhumane treatment and were subjected to experimentation. Maybe they were visited by family members; in many instances, they were simply forgotten, the institution relieving families of the embarrassment of having to publicly acknowledge the imperfection in their bloodline.
Things have improved greatly since then, but accommodating individuals with special needs continues to be seen as a burden by many of society's institutions.
For businesses and government offices, this entails costly changes to facilities and training employees to handle situations involving special needs individuals appropriately, with dignity.
For schools, this entails the development of I.E.P.s (Individualized Education Plans) for each special needs student, specialized facilities, and additional support personnel.
For churches, this means re-thinking their theology regarding the origin of disability (there will be a future post addressing this particular issue), as well as determining how to best minister to these individuals and their families.
For doctors, it means realizing and acknowledging that they DON'T have all the answers. It means knowing what they don't know, and taking the time to rectify those deficiencies in their medical knowledge.
Some individual entities truly make an effort to understand and accommodate special needs individuals.
And then there are the others.
I was raised to be diplomatic, so this lesson has come quite hard for me. I tend to give people a lot of chances, try to reason with them. In most instances, that approach has served me well.
But when it doesn't, there is only one thing you can do.
Go in to that meeting loaded for bear.
I have had more than my share of meetings during which things got very heated. As a parent advocating for my child, it is my responsibility - my obligation - to hold the feet of teachers, doctors, businesses, etc., to the fire.
One teacher refused to honor the terms of our son's I.E.P (a legally-binding document governing the education of one's special needs child); after repeated meetings with her, we began pursuing appeals further up the chain. She was eventually let go because she refused to abide by the terms of the I.E.P.
In another instance, while pursuing alternative medical treatments for RJ's autism, our pediatrician put us on notice that she, as an M.D., disagreed with the alternative treatments we were researching (the other doctor was a D.O.). She advised us that, if we continued to pursue alternative treatments, she would no longer care for our son. Now, we had kept her apprised of everything we had done, including providing her with comprehensive notes. I reminded her that we have a right to pursue second opinions and alternative treatments. "Yes, that's true. But the moment you choose to act on them, I can no longer be part of your son's treatment." We had a sharp discussion regarding her approach to treating autism, during which she informed me that, "I am comfortable that I am up on autism in the traditional sense." I replied, "That's the problem; you have limited yourself to traditional thinking. If you can't medicate it or operate on it, your response is, 'there is no cure; go home and deal with it.' We need a doctor who can think outside the box, because I refuse to believe there is no cure for autism." We left her practice and found a doctor with whom we can work.
Businesses are not exempt, either. The Civil Rights Act, the federal Americans with Disabilities Act (ADA) and most state laws very clearly delineate how businesses must accommodate persons with disabilities, yet problems still exist.
Several years ago, we visited a Michigan zoo for RJ's birthday. RJ has an autism assistance dog, a service dog specially trained to keep him safe by insuring that he doesn't bolt when out in public. The ADA and Michigan law very clearly state than a service dog may not be denied entry to any business, yet the gate employee would not allow us in with our service dog - despite being shown a copy of the law. Advocacy in this instance took the form of contacting legislators, local news outlets and the threat of legal action - a step that I take very seriously and use in the rarest of situations. Within a few days of the incident, the zoo responded, apologizing for the incident, retraining their staff, and inviting us back for a visit that included behind the scenes access and an opportunity for RJ to feed their rhinos.
While most incidents requiring advocacy for our son have been accomplished amicably, that hasn't always been the case. Advocating for your special needs child isn't always a pleasant experience. But you as parents are their best advocates.
I vividly remember a phone call I received from one of our friends, the mother of an autistic child. She was angry because a teacher refused to honor the I.E.P. of her son in ways that bordered on abusive. I allowed her to vent for ten or 15 minutes, at which time, emotionally drained, she said, "I just don't know what to do." I assured her that she did. She had already set up a meeting with the teacher, but she just wasn't sure how to go into the meeting. She felt that she was entering a meeting with the odds stacked against her, that it was going to be her versus several administrators and the recalcitrant teacher. I reminded her of the anger she had just expressed to me on the phone and advised her, "You need to bottle that anger, go into that meeting knowing what your son needs, and open up that bottle on them!"
You, and you alone, are the best advocate for your special needs child. Despite what the system wants you to believe, YOU know better than their so-called "experts" - most of whom have never actually raised a special needs child themselves.
Work with them.
Communicate with them regularly.
Stay on top of them.
Hold their feet to the fire.
And yes, when the situation calls for it, open that bottle on them.
Monday, March 2, 2015
China Dolls And Kid Gloves - Or, How To Avoid Letting Your Special Needs Child Come To Rule The Roost….
I was an active Transportation Screening Officer with the Transportation Security Administration for four years. Because of my first-hand experience gained from raising our own son, I was also the unofficial go-to person for many of my co-workers when it came to dealing with special needs travelers. Many times I had to intervene when co-workers had trouble dealing with such passengers - or their parents, and on many other occasions, I was able to give my co-workers advance notice when I saw special needs passengers coming to the checkpoint.
With very few exceptions, I could spot a special needs passenger almost from the moment they entered the terminal.
Why?
Because of their behavior.
And because of how their parents expected everyone else to act around them.
Now, I don't claim that my wife and I have done everything right since receiving the diagnosis of autism for RJ, but there is one determination we made early on that has, I believe, put us in good stead: we determined, as best we could, to raise RJ as normally as possible.
You see, it has been my observation that many special needs parents, upon receiving the diagnosis of a developmental or physical disability, begin to treat their children like china dolls, handling them with kid gloves. They accept any and all behavior as normal and acceptable because their child has a disability.
If the child screams, it is allowed.
If the child raids the pantry or refrigerator whenever the mood hits, it is allowed.
If the child becomes violent or abusive, everyone else modifies their behaviors in an effort to placate the child - and they expect everyone else around them to do so as well.
In many cases, they are selling their child short.
Raising a special needs child "normally" is a huge task. It requires even more work than is required under "normal" conditions, working with "normal" children. It requires advanced planning and contingency plans for every social situation until the appropriate behaviors begin to take root.
Most of all, it requires a commitment and determination to remain on course.
It is exhausting.
But it CAN be done.
It took longer than normal to determine the full extent of RJ's autism, because, as the psychologist conducting the evaluations observed, many of the normal autistic behaviors they expect to see weren't there. There were no screaming jags, no meltdowns. RJ cooperated (for the most part) with the therapist, with few efforts to get up and wander off. And while she still had to deal with a level of echolalia (repetition of words/phrases), stimming (repetitive body movements), and perseveration (fixations on objects or subjects, such as RJ's fixation on all things pertaining to trains), his behaviors were actually very normal.
How, she asked, had we accomplished this?
We told her about our early determination to raise RJ as normally as possible, with the same kinds of behavior expectations as we have for his younger, non-autistic brother. We explained how we worked to establish our behavior expectations, using verbal instruction and visuals to teach and reinforce those behaviors, and how we dealt with behaviors that were unacceptable, disciplining when those other efforts to produce acceptable behaviors were not heeded. Over time we became better able to distinguish between "normal" behaviors and those associated with autism.
And we learned something.
With consistent effort and patience, even the behaviors associated with autism could be modified and diminished over time.
Today, RJ is a junior in high school. He is in an ASD classroom learning from a modified curriculum, and this year he became the first autistic student from his school and - as far as we have been able to ascertain - from our entire West Michigan school district to join his school's swim team. At first glance, most people do not realize he has autism. He presents as a well-behaved, well-mannered, affectionate young man. It is only as they speak with him and spend time with him that his autism becomes apparent.
We have not arrived, there are still behavioral lessons for RJ to learn, but our efforts have produced results that are beneficial to RJ, our family, and those around him.
Most significantly, RJ does not rule the roost.
It begins at the same place where Daniel, in the Old Testament, began: "… Daniel purposed in his heart…," Daniel 1:8.
Your determination not to raise your child with kid gloves will pay off in significant ways.
With very few exceptions, I could spot a special needs passenger almost from the moment they entered the terminal.
Why?
Because of their behavior.
And because of how their parents expected everyone else to act around them.
Now, I don't claim that my wife and I have done everything right since receiving the diagnosis of autism for RJ, but there is one determination we made early on that has, I believe, put us in good stead: we determined, as best we could, to raise RJ as normally as possible.
You see, it has been my observation that many special needs parents, upon receiving the diagnosis of a developmental or physical disability, begin to treat their children like china dolls, handling them with kid gloves. They accept any and all behavior as normal and acceptable because their child has a disability.
If the child screams, it is allowed.
If the child raids the pantry or refrigerator whenever the mood hits, it is allowed.
If the child becomes violent or abusive, everyone else modifies their behaviors in an effort to placate the child - and they expect everyone else around them to do so as well.
In many cases, they are selling their child short.
Raising a special needs child "normally" is a huge task. It requires even more work than is required under "normal" conditions, working with "normal" children. It requires advanced planning and contingency plans for every social situation until the appropriate behaviors begin to take root.
Most of all, it requires a commitment and determination to remain on course.
It is exhausting.
But it CAN be done.
It took longer than normal to determine the full extent of RJ's autism, because, as the psychologist conducting the evaluations observed, many of the normal autistic behaviors they expect to see weren't there. There were no screaming jags, no meltdowns. RJ cooperated (for the most part) with the therapist, with few efforts to get up and wander off. And while she still had to deal with a level of echolalia (repetition of words/phrases), stimming (repetitive body movements), and perseveration (fixations on objects or subjects, such as RJ's fixation on all things pertaining to trains), his behaviors were actually very normal.
How, she asked, had we accomplished this?
We told her about our early determination to raise RJ as normally as possible, with the same kinds of behavior expectations as we have for his younger, non-autistic brother. We explained how we worked to establish our behavior expectations, using verbal instruction and visuals to teach and reinforce those behaviors, and how we dealt with behaviors that were unacceptable, disciplining when those other efforts to produce acceptable behaviors were not heeded. Over time we became better able to distinguish between "normal" behaviors and those associated with autism.
And we learned something.
With consistent effort and patience, even the behaviors associated with autism could be modified and diminished over time.
Today, RJ is a junior in high school. He is in an ASD classroom learning from a modified curriculum, and this year he became the first autistic student from his school and - as far as we have been able to ascertain - from our entire West Michigan school district to join his school's swim team. At first glance, most people do not realize he has autism. He presents as a well-behaved, well-mannered, affectionate young man. It is only as they speak with him and spend time with him that his autism becomes apparent.
We have not arrived, there are still behavioral lessons for RJ to learn, but our efforts have produced results that are beneficial to RJ, our family, and those around him.
Most significantly, RJ does not rule the roost.
It begins at the same place where Daniel, in the Old Testament, began: "… Daniel purposed in his heart…," Daniel 1:8.
Your determination not to raise your child with kid gloves will pay off in significant ways.
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