Autism Awareness

April is Autism Awareness Month. One of our sons has Asperger’s Syndrome, which is a milder form of Autism. I often blog on the subject in April because there is still a huge need for awareness in the Mennonite community. Even if you're not overly interested in the subject, indulge me if you would, please. 

I recently read the excellent book “Raising the Perfectly Imperfect Child” by Boris Vujicic, father of the motivational speaker, Nick Vujicic, who was born without limbs. Too bad this book wasn’t available 20 years ago! I’m borrowing thoughts from the book and relating them to our particular journey. (The bold print is his chapter titles, the paragraphs in italics are thoughts or direct quotes from the book.)    

The first 2 chapters of the book –The Perfectly Imperfect Child, and Give Yourself Permission to Grieve & Time to Recover- are good, but not our experience. Unlike parents of a baby with a physical disability, a neurological disability isn’t always immediately obvious.   Our world wasn’t immediately rocked with the birth of our child; we came to more of a gradual realization that our quirky kid had a disability. But we can relate to some thoughts gleaned from those chapters: “The disability doesn’t define the person he will become”… “You’re not the first parent to go through this”… “Often what seems to be a great burden proves to be an incredible gift”… and “You know only what you have experienced in the past; embrace what you are about to learn.”  

In Chapter 3- A New Normal- Mr. Vujicic encourages parents of a perfectly imperfect child to resist the urge to isolate themselves and accept support and encouragement from family & friends. In our situation, the diagnosis popped up out of nowhere. There was no Autism in the family tree. (Actually we had a misdiagnosis for 10 years of OCD [obsessive compulsive disorder] –none of that was in either side of the family either.) We seemed to be an anomaly among the plain people. Few in Mennonite social circles had heard of these disabilities. We didn’t know anyone parenting a child with the same challenges as us. We knew they had to be out there somewhere, but we didn’t meet any. Over the years we heard of other Mennonites dealing with a younger child on the Autism spectrum, but no one with a child the same age as ours. We were pioneers blazing a trail where there was no path. Or so it seemed. We spent an enormous amount of time attempting to educate others and defending our choices to the well-intentioned but uninformed. We would be the first to admit we didn’t handle everything right, but we did go through seasons of isolating ourselves. Right or wrong, it was a coping mechanism for painful stuff I won't drudge up. There is so much truth in the Native American saying ‘do not criticizing a man until you walk a mile in his shoes’. If you are not in their shoes, you do not have the answers. It’s okay to say “I have no idea what I would do in your shoes. I’m sorry it’s so tough for you.”

Let Your Child Be Your Guide- Your child isn’t defined by disabilities or labels. Let your child teach you who he is... Focus on what he can do, rather than on what he can’t... Encourage him to set his own pace... Keep communication open and always assure him he’s loved and valued. Don’t assume he is okay. Monitor his moods closely, in the preteen & teen years.   

I am aware there are people who are passionately anti-label. A child should never be labeled. Labels only hold them back, or make excuses for bad behavior. I’m not going to try convincing you otherwise if you are in that camp. What I do know is that for our family, a label was helpful. We knew in our hearts that our kid was more than just quirky. Or a spoiled brat that just needed some firm discipline. Having a label gave us something to work with; it went a long way in helping us understand what we were dealing with. Is there a danger of falling in the ditch of making excuses for your kid “my kid can’t help it he’s this way”? Yes, but not every parent is going to stray into that ditch. In our case, having a label freed us up to focus on strengths. All I’m saying is if a label helps, use it; if not, toss it out. I will also say that because we had the wrong label during our son’s school years, we pushed him in areas that were difficult for him. Expected things of him that we may not have otherwise. I regret that we were not more understanding, but not for the challenges he overcame; he is independent in ways many adult Aspies are not. 

Monitoring your child’s moods is a hard one to talk about. Mennonite people aren’t supposed to have mental struggles. We don’t even talk about the S-word. God is enough. You just “pull yourself up by your boot straps” and rise above the dark clouds. Really? As one who deals with clinical depression, and yes, vulnerable as it is to admit, has struggled with suicidal thoughts, I vouch that it’s an ugly monster that can rear its head among us. Did it scare me spitless to be fighting my own dark demons and then have my child say something like “I should just kill myself and spare you all the trouble of dealing with me”? Absolutely! Was I drowning in guilt for wishing I could escape the heavy burden of his disability? Definitely! Did I cry gut-wrenching sobs in secret when I mentioned the special bond my child had with animals and he replied it’s because they accept him just the way he is [implying that humans do not]? I sure did. And I wept bitter tears that my children were growing up without knowing what it was like to have a happy mama. We are not immune to hard things just because we are a church member. We can know the source of strength and still struggle. It’s not God’s plan, but we live in a fallen world.     

The Medical Maze- Become an expert on your child’s medical needs. Be prepared to fight for whatever is best for him; no one cares as much as you. Make the most of resources- find a support group. Be cautious about internet information.

We were fortunate that one of my coping mechanisms was research. I researched A. lot. We were blessed with a wonderful Christian psychiatrist. We stumbled upon an excellent equine therapy program right in our rural area, which was a God-send at that time in our lives. Those ladies set up a meeting for us with an Autism specialist who gave us some wise guidance for the teen years. And then there was the young boy I met so unexpectedly with a beautiful openness about his disability that made the final piece click into place for us. So much of our medical journey was people/resources we found almost by accident, but definitely with God’s fingerprints on them. There is an Autism support group for our county now, but there was not one when we needed it most. The internet was our friend, however I agree- you must exercise caution- just because it’s posted on the internet doesn’t make it true/advisable.  

Another thing we dealt with in this arena was alternative medicine. Well-meaning folks tried to force on us every craze that came down the pike. So many good people were just sure the natural supplement they were taking was the missing link/sure cure/good for whatever ails you potion that you we needed. All of these came with rather high price tags and/or membership requirements in a pyramid. Early on we got our hopes up and tried things, but after a couple disappointments and lighter wallet, we started refusing all alternative medicines. There were a couple folks who turned up the pressure, insisting we didn’t care about our child if we’re not willing to give their product a try. I mean, do you really want to risk passing up what could turn out to be a miracle cure for your son? We’re not talented with snappy comebacks –we always think of the perfect thing to say 2 days later- but we may or may not have pushed back with a polite version of “ok, if it’s so miraculous, you pay for it and we’ll see that he takes it”. Curiously enough, the phone call ended shortly after that. Our advice if you find yourself in that situation? Don’t be afraid to stand your ground.  You love your child and know what is best for him even when you are not willing to spend $95.99 per month for something that looks like swamp water. ‘Mennonite’ does not have to be synonymous with ‘gullible’. That’s all I’m going to say about that. And for those of you who are in direct marketing of alternative products- I get it that you are excited about your product and I’m happy for you that it has helped you so much, but when a parent says no, just let it go. Please.  

Give Siblings All They Need Too- Siblings can be best friends & allies or resentful rivals. Take care to give them love & time so they don’t feel left out... Siblings can feel resentful if the disabled child isn’t disciplined, assigned chores, held accountable. So where possible don’t allow the disabled special treatment... Educate them about the disability. Assure them it’s not contagious… Teens can have complex feelings, embarrassed by sibling, yet protective, during those years when fitting in & being accepted is so important. Be aware. Communication is critical…

There is an upside for siblings! Potential benefits are a more mature outlook on life than peers, more empathy, stronger coping & problem-solving skills, greater gratitude for things most people take for granted, more patience, better teamwork skills, and an open heart toward those with special needs or illnesses… Kids with special needs siblings are often subjected to teasing, taunts, bullying and social isolation. This is so common that psychologists have a name for it- “disability by association”.

If there is any area of parenting where we feel we have failed, it would be this one. We have not done enough to help our other children navigate the difficult journey forced on them. We missed the mark on assuring them they are loved & valued during the years our lives were consumed by the disability. We failed to educate them about the disability; the ridiculous assumption they were picking up knowledge vicariously through my research- “I now understand it, therefore they do too.” But the paragraph above especially stood out to me. I hadn’t thought about there being an upside of being a sibling. But now that you mention it... I have seen the benefits surface in my children. Can there be a prouder moment for a parent than when you see/find out one of your children stood up for their disabled sibling against a bully? And “disability by association”- so common it has a name. Wow! It is a real thing, not just my imagination.  

Championing Your Child's Education- You must be an advocate for your child. No one cares as much about your child or knows them as well as you... Be involved in their activities & programs... Educate yourself about the laws, right & requirements of disabled education. Make an effort to find funding& special programs-they may be eligible for more help than you think...

Closely monitor your child's moods & attitude toward school so you can detect if bullying is an issue. Few kids escape bullying completely but studies prove kids with disabilities are targeted more than others. Some bullies are victims themselves, others are mean-spirited, a few are misguided- believing they are just teasing/joking around. Be supportive- don't encourage them to fight back or confront; rather report incidences to appropriate persons. Try putting things into perspective, urge them to filter out cruel comments or shunning. The best revenge is to have fun with people who do enjoy their company.

A parent can only do so much to protect & insulate. To some degree it's good for them to understand in the real world not everyone will accept them. A hard heart is not a good thing, but a tough skin is an asset... "Bullying affects nearly every family to some degree, but it's particularly heartbreaking for those with disabled/special needs kids because our children already have substantial burdens. Cruelty from their peers can threaten to destroy all the efforts parents put into building self-esteem and strong character in their kids." ...Special needs kids are individuals too. They are more than their disabilities. They have talents & gifts to give the world. ...The best way to prepare your kid to handle bullying effectively is help him build a strong sense of his own value. Let him know he is loved, and worthy of love. Help him identify his talents & gifts and build on them... Encourage your other kids to stand up for the disabled.

That chapter was loaded with great advice! It makes me misty-eyed to type that synopsis because education was a particularly difficult part of our story. Against our will we were pioneers blazing a trail through a tiny private school that was not ready/equipped to handle our case. Special Ed was almost non-existent in small Mennonite schools at the time. They have come so far- I'm so proud of where many of our schools are now with special ed.

This is the way I see it: we were unfortunate enough to enter the education scene during the height of the ADD/ADHD wave. Kids everywhere in the public school system were being slapped with the label and prescribed Ritalin to calm them down. Until researchers uncovered the truth that Ritalin was a drug with the power to mellow anyone, even an already calm person; and it was being over prescribed. They back-pedaled. But meanwhile in reaction to the ADD/ADHD craze, there were teachers -in my opinion, especially in Mennonite schools- who were anti-label and denying that ADD was a real thing. Denying there were any of these “new” disabilities at all (they actually were not new, just gaining recognition); I believe the idea at the time was Mennonite kids don't get ADD because we have stable loving homes and we discipline our children properly. We got caught in the backlash of all that. Now days there is more acceptance that learning disabilities are a real thing.

In defense of the teachers we worked with, they were doing the best they could with the information they had at the time. When classroom teachers have neither the time or resources to cater to your student individually, you have to do it yourself. Ultimately, we ended up doing what I said I would NEVER do –we homeschooled him. Desperate times called for desperate measures. There was no funding, and no special programs for us. We had to fight/advocate for everything we got. Because it had never been done before in our community. But it was worth fighting for, not just for our child, but those who are coming along behind us. At one time in my life I really wrestled with resentment that we were the experimental guinea pigs, but I’ve come to terms with that.

Bullying is another thing Mennonites don’t want to talk about. One thing we all have in common is we all believe our child would never be one. They might be a victim, but never the perp. It shouldn’t happen among us, but it does. At church, at school. Can we just admit our children are quite sly at covering their tracks? I can’t agree more with Mr. Vujicic "Bullying affects nearly every family to some degree, but it's particularly heartbreaking for those with disabled/special needs kids because our children already have substantial burdens. Cruelty from their peers can threaten to destroy all the efforts parents put into building self-esteem and strong character in their kids." So, so true. But I love his advice for parents to teach their perfectly imperfect child- “The best revenge is to have fun with people who do enjoy your company”. Awesome advice for anyone, really.

There is probably nothing that brings out the mother lion in me more than when people comment that my child is smart or talented or some such adjective. Being perfectly imperfect does not automatically make him stupid. I know they mean it as a compliment, but don’t say it. Just don’t.  

Roots & Wings- Next to the initial diagnosis, the greatest challenge comes when the child is done with school and entering adulthood. Attaining complete independence isn’t always possible. There are no guaranteed plans for self-sufficiency… Every child should know they have the power to make the best of their circumstances & they are never alone if they have faith… Parents grow accustomed to being in control and making the decisions. Once our children reach adulthood they want to make their own decisions. It’s difficult to let go, more so to see them make mistakes and struggle. The greatest gift we can give them is unconditional love, a sense of purpose, a spiritual base of hope… Parents often take it day-by-day in the younger years because it’s the only way to survive but when they reach the teen years, we need to look at to what extent they can be independent and help them prepare for it. Don’t forget to prepare yourself for the day he takes flight. The adult you raised just might amaze you!

We are still in this stage, although farther along than I once dreamt possible. Employment was an uphill battle. We tried everything we could think of, and we were very much criticized for choices we made. But he currently has a good job. At times I’m tempted to start worrying and panic. In a “if it sounds too good to be true, it probably is” kind of way. The bottom could fall out of our good fortune again, but for now we thank God for employment. There were days & years when I seriously doubted we’d ever attain this level of independence. I feared there was no hope or a future for my child, I couldn’t see the good plans God had for him. If you are in the midst of a similar journey to ours, there is hope. Cling to Jeremiah 29:11.

Keep The Bonds of Marriage Strong-   People say “You must be special parents” Not really, we just did the best we could with what we knew. “______ couldn’t have been born to a better couple” –intended as a compliment, but we don’t see ourselves as the best sort of people for raising a disabled child.

Again, I couldn’t agree more. We have not very often been complimented on our parenting, but the few times someone said something similar to us I had a slight urge to slap them (in the most nonresistant Mennonite way possible, of course). I am not a hero. I would give just about anything to not have been handed this lot in life. I know what you mean and I’ll smile graciously, but don’t say it- it’s not a compliment.  We didn’t get any special training, our kid didn’t come with a manual; we worked hard to figure it out as we went along. It's only by the grace of God that we didn't screw up more often. 

It is critical for parents to support & stay united when faced with the challenge of raising a disabled child. The 1^st child tests the relationship; if that child is disabled the stress multiplies exponentially.

I thank God our journey with a disability strengthened our marriage. The only way to survive was to share the load. At some point in our parenting I came across an article outlining the 3 types of marriages most likely to end in divorce. They are military couples, first responders, and parents of the disabled. Statistics were very, very high. I take a certain amount of pride in the fact that we defy the odds.   

FYI: the book outlines 6 Strategies for Marriage Under Stress that are worth your time.

Build a Spiritual Foundation- Nearly all parents of disabled children struggle early on with “why?” Do not feel guilty for this. Jesus in His darkest hour asked the same question. We may never understand what God is trying to teach us or how your child’s pain can demonstrate grace & glory… “When a child is born with disabilities/special needs, even the most spiritual parents will have questions about God’s intentions. If we had no questions, we would not need faith in our lives.” It’s ok to pray for a miracle/healing, but accept God’s plan- it’s for good, not evil.

I did my share of asking “why?” When I get to heaven I plan to crawl up on God’s knee and ask Him to show me all the good that was accomplished by our journey.  

   

Here's to all the awesome people who are different, not less!

And the families who love them.