High functioning autism
Recently, I was asked to be a guest writer for Heartfeltramblings.com, and share a short message about raising our 10 year old son who has Asperger’s Syndrome. Here is that piece:
Two weeks before Christmas, my 9-year-old son asks me, “Mom, can I ask you a question?”
“Sure”, I replied.
“Well,” he began, wringing his hands together and looking down at the floor, “I just wanted to say that at 6:00 am in the dark, I went into your room with the night vision goggles to look at my presents.”
“Oh,” I said, encouraged by his confession. “And how do you feel about that decision now?”
“Well, pretty sad, because they weren’t bright enough and I couldn’t see my presents.”
“Hmmmm, I see. And is not being able to see your presents the only thing you feel bad about?”
Being a parent isn’t easy for anyone. I respect the challenges and situations that every mom and dad have to face when it comes to God’s highest calling, and I would never assume that our difficulties are any more trying than anyone else’s, they’re just different.
Our son, Samuel, has High Functioning Autism (or Aspergers) and parenting him comes with its own set of rules, most of which, we’re still learning. But much more important than discovering our son’s practical parenting needs has been the lessons that God has taught my heart along the way. It’s learning how, not only to allow God to interrupt our plans, but coming to fall in love with those interruptions.
“’For I know the plans I have for you’ Declares the Lord” – Jeremiah 29:11
“In their hearts humans plan their course, but the Lord establishes their steps” – Proverbs 16:9
This journey hasn’t been easy, and it’s never going to be easy. Truth be told, there are many days where I just don’t know if we’re going to make it, and all I have left in me to do is cry out to the Lord for help. But trusting the Lord means allowing Him to write our story, even when we think we could have made the plot better, or we don’t see how He is going to tie it all together.
Holding my baby son, I had already written his story according to my desires: Straight A student, football, college, marriage, and grandbabies. But God is the sovereign writer. He directs our steps in spite of what we think is best, then creates a masterpiece that is so much more beautiful than anything we could have come up with on our own.
The days of frustration may sometimes outnumber the days of joy, but they definitely don’t outweigh them. As difficult as Aspergers can be, there is also great wonder in discovering the world through Samuel’s eyes.
We have jokingly come to refer to him as Mr. Spock since he views everything through a literal lens, which has also made him a master loop-hole finder. This has caused us really raise the bar with our communication. Not just with Samuel, but with all of our children as a result. He has a gift of memorization and music that takes my breath away, and is always creating outside of the box.
Next year, we will be embarking on the adventure of homeschooling Samuel after having a very difficult time in public school. This decision started out of necessity, as the classroom is no longer a healthy environment for him, but the more I prayed about it, the more I began to see all of the amazing doors that this move is going to open up to him. We’ll be integrating occupational therapy techniques into the curriculum and will have every opportunity in the world to build and develop him in his unique areas of gifting.
And the best part is, we’re not going at it alone.
They say it takes a village to raise a child, and it’s true. I believe it takes a Church family to raise a child with Aspergers, and we are so blessed to have ours. This is a group of people who have come around my husband and I and prayed with us, supported us, and occasionally taken our children when I just needed to take a walk and gather myself.
A few weeks ago, Samuel received his first award at the school and we were so blessed to see such a large group from our church show up to cheer him on as the principal called his name.
I don’t know why God chose us to raise Samuel, but I am so thankful. He has an incredible plan for his life and we’re humbled to be given this responsibility. It takes a reliance on the Lord’s strength and careful listening to His voice to know how to tackle each and every challenge, but He has been faithful to give us everything we need to help our son live long and prosper.
I remember holding my firstborn son, Samuel, in my arms all swaddled up in his blue blankie, pacifier in his mouth, and singing to him until he fell asleep for his daily nap. Everything about him took my breath away. Everything about him was perfect. Like many parents, I would look down at him and imagine his future: What sports will he play? probably Football since his daddy loves it so much. When will he meet his wife? He’s so handsome, all the girls will be following him around. What career path will he choose? Something that can well support a family, I hope. Web designer, or engineer, though a missionary would be awesome, too. Samuel’s life according to mom, was looking pretty good.
The lack of hitting developmental milestones can be easy to overlook in the first year or so, especially if you don’t have enough experience with small children to be able to gauge “normal”. It wasn’t until Samuel’s brother, Silas, just 13 months younger, began to progress as an infant and toddler should, that we began to suspect something may not be right with Samuel. Little things, like lining up his cars by color, his delay of speech, his adversion to certain textures and water became highlighted by our younger son’s “normal” behavior.
At age two, with no sign of verbal communication and other behaviors growing worse, our pediatrician referred us to a speech and occupational therapist. Within a year, Samuel was speaking in sentences and running through the sprinkler. Washing his hair at bath time no longer required two adults and he had almost completely stopped banging his head on things. Over the years the therapists used hopeful phrases like “closing the gap” to describe his progress, and we looked forward to a day when we would soon be “past all this stuff.” Just before Samuel turned 5, we moved away and had to stop his sessions.
That first parent-teacher conference brought us back down to earth.
“Samuel is having a hard time in his overall understanding and I am concerned about some of his behaviors. He doesn’t seem to grasp anything being taught. He also doesn’t understand what ‘No’ means, but he can take direction from visual Que-cards. If I tell him ‘Don’t draw on yourself with the markers’, he looks at me blankly, then continues to draw on his arm. But If I make a sign with a stick-figure drawing on himself, then put a circle with a line through it, and set that card in front of Samuel, he stops drawing on his arm.”
First grade proved to be even more telling. Samuel struggled socially. Samuel struggled academically. Samuel just struggled. It was this teacher that got the ball rolling by saying what I imagine had to be very difficult for her. “Samuel is not meeting the standards, and I really don’t know if he is able to. I know this is hard, but it may help you to have him evaluated by a psychiatrist.”
It was so discouraging. We didn’t want a “Label” on our son, but we wanted answers. We wanted to know how to help him, teach him, and communicate with him, but we didn’t want to give him a crutch, which we thought saying the word, “Aspergers” might do. Home life was growing more and more difficult. Samuel was easily aggravated by his siblings, schedule changes, loud noises, and usually responded with aggression. We needed help, but getting answers was no easy process.
First, we had to visit the Ped, who referred us to our local community mental health organization, who referred us to the Gonzaga Autism Program, who sent us to the school district’s psychiatrist, who said they don’t diagnose, and only evaluate students for academic purposes, not social or sensory reasons….. and months later we were back to the ped again. Our second referral, now into his second-grade year, was to the Northwest Neurobehavioral Institute, where after a 12 hour evaluation and testimonials completed by teachers, our ped, and my husband and I, we finally received a diagnosis: High Functioning Autism.
I don’t think that anything could have prepared me for that moment. It was a mixture of great relief for finally having an answer, and mourning for the loss of the life that I had projected for him in my mind. Then the questions: What will this look like going forward? Will he ever get married? What kind of a dad would he be? Will we need to support him forever? Will he go to college? What next? What I remember feeling the most at that time was alone. I needed someone to lean on emotionally while I processed this, and not someone with little knowledge and big answers.
Samuel is now in 4th grade, and I would say that we’re really starting to learn how to navigate these waters. Each challenge that presents itself tugs at our heartstrings, bringing with it the “What-ifs”. The worst of those are the days, or even weeks, when we go challenge-free and tend to forget about Autism until something happens and it shows up in full force, and a little bit of that mourning for the non-existent made-up son comes back again. Getting a diagnosis like this for your child can be heartbreaking, but it can also be an opportunity to fall in love with your child in a way that is amazing and unique. Here’s a few lessons we’ve learned along the way:
Love your child for exactly who they are. This part comes after acceptance and letting go. Your child will be better for it, and your heart will be better for it. “In their hearts humans plan their course, but the Lord establishes their steps” – Proverbs 16:9
Pick and choose your battles. And oooooooooooooh, do you have battles with an autistic child! We basically take each situation as it comes and put it into one of three categories:
- This is a behavior issue needing correction.
- This is an Autism issue that can be accommodated.
- This is an Autism issue that we need to help him overcome so he can be successful in life.
For example, eye-rolling when told it’s time to start our homework would be number one and would need a discipline. Changing his shirt 4 times in a day because he gets a raindrop on it and doesn’t like the way it feels is inconvenient for me as the laundry doer, sure, but it’s not hurting him or anyone else and is really OK. Not wanting to wear his seat belt because it makes him claustrophobic, however, falls into number 3 (or as we call it, the ‘too damn bad’ category).
Tell your child. Don’t make it license for them to do whatever they want, but don’t hide it either for the sake of protecting them from the dreaded label. If your child is very high-functioning like ours, he knows that he doesn’t fit in. Hiding it from him will always make him wonder why. There can be freedom in an answer.
Tell their siblings. Samuel’s autism has forced some maturity on our other children. They understand why Samuel has some different standards than they do (like not being required to make eye contact when talking to an adult), and it wouldn’t be fair to them to not explain why that is. It gives them compassion for his meltdowns and, for us, has been a great opportunity to teach the kids how to pray for each other.
For God’s sake, laugh about it! Yes! It IS OK to find the humor in the quirky things they do. Sometimes I will refer to Samuel as Mr. Spock, or have a good laugh over stories shared with other moms who have children on the spectrum. It’s very therapeutic.
Praise their strengths! Children, and adults, with Aspergers and High Functioning Autism often beat themselves up for their failures. They’re usually extremely good at some things, and extremely bad at other things. Praise them for the things they are very good at, and offer help to them for the things they aren’t so great at.
Be their advocate. Go to any length to get them the help they need. Early intervention and therapy can make a HUGE difference in the life of an autistic child. Research. Get a 504 plan or an IEP. If you suspect your child needs to be evaluated, annoy the bajeezers out of your doctor until you get it. Stand up for them. Don’t be afraid to “educate” people who are treating them unfairly. I am a pretty passive person, and I have had to grow some serious mama bear claws when it comes to dealing with others who interact with my son. Lastly,
Love them some more. Everything about him takes my breath away. And everything about him is perfect.