Special Needs, Special Challenges, Special Grace

Facing God's Grace Rather Than Man's Judgement

This is a first for me. Other than a passing comment here and there, I've never posted about the challenges of autism. It's not because I want everyone to think our life is perfect, or even because I choose to dwell on the positive. It's because I love my son and I want others to think well of him.

I know all too well how easy it is to pass judgement on a child who seems to be throwing a tantrum in public. And the parent is obviously not disciplining like he or she should. That child needs a good old fashioned spanking. I know because this was me. I was ignorant and ungracious. Now I understand. Oh, how I understand!

Because I am a people pleaser by nature, I struggle when Eli melts down in public. I don't want to be judged, and I certainly don't want my son to be judged. But then there is a difficult decision to be made. And each situation is unique, so the decision has to be made over and over again.

I have to try to think of what Eli would want.

Would Eli prefer that I tell those in the near vicinity, "I am so sorry we are being disruptive. He has autism and doesn't know how to tell me what's wrong"? Apologize for bothering them and hopefully educate them a little? Or would Eli rather not be labeled? If he could express himself, would he say, "Who cares what they think, just get me out of here"? I confess I haven't figured this out yet, so I pray for wisdom. A LOT.

I do know this - in the end, I only need to please God. He loves me, even if I get it wrong sometimes. And He loves Eli even more than I do. He gives grace. This is enough!

"Very Suspicious"

Most of Eli's struggles in public typically come when he is faced with something new. Our family calls these new things "suspicious." Particularly suspicious seem to be large rooms with vaulted ceilings, so we can usually be found in the lobby during Owen and Audrey's band concerts. Kevin had to leave my nephew's wedding and take Eli home a few weeks ago. We believe it was the large room with vaulted ceilings that caused him to scream "Get me outta here! Don't want!" to the strains of Cannon in D. But then again, we're not sure because he can't tell us.

Poor buddy hates school pictures!

He also hates transitions (changing from one activity to another) and deviating from his usual schedule. At school, his teachers patiently try to shepherd him through class pictures (is it the flash that he despises? the gym?) and the Christmas program (he did The Worm and almost took out the consulting teacher while the rest of his class sang about the Virgin Mary's Baby Boy). I gave up on the field trip to the botanical gardens because of the length of time we'd be there and the wide-open area surrounded by woods. And we've also decided that we will take him to Urban Air instead of asking him to wear a cap and gown and walk in front of a gym full of parents at preschool graduation. Because graduation is about celebrating what Eli has learned, not about displaying his weaknesses in front of an audience. (And he has learned so much at school!)

NOT a happy birthday.

New foods are also suspicious, as are all vegetables and all fruit (except applesauce). So Eli has to take vitamin and mineral supplements. And toilet training is definitely an issue. It might sound crazy, but this is currently the MOST challenging thing we are facing. Eli is basically toilet trained except for poop. He goes absolutely berserk if he needs to go and he's on the toilet. Total freak out mode. We've been working on this for over three years, taking breaks when it got to be too much. But a five-year-old in pull-ups is HARD. There is more to this but out of respect for Eli I will leave it at that.

Safety Concerns

There he goes...

It takes constant vigilance to keep Eli safe. He doesn't understand danger. He will run across a busy parking lot. He is not wary of strangers; for example, when he had his day of evaluation at the developmental center, he left Kevin and me and walked right into the room with the psychiatrist, whom he had never met. My son didn't even look back.

Eli also elopes. Crowded places, bodies of water, and woods are a real fear for us. Even our own home isn't completely safe. Just this week, Eli unlocked the front storm door, went outside, got in the van, and shut the door. Besides the risk of his knocking the van into gear, the thought of him shutting himself in a hot van this summer is terrifying. So two days later, we installed loud chimes on our front doors that sound when the door is opened. My boy also tries to escape at our church, which meets in a busy Uptown Memphis neighborhood. Again - it's a matter of constant vigilance for our family.

Too hot!

Another safety issue is stimming in hot weather, combined with Eli's constant state of motion. If we go to a park or the zoo, for example, Eli will stim on the fence or rail or playground equipment without stopping. We have to force him to take a break - which of course leads to a public meltdown.

Communication

What's wrong?

Obviously, this is a big one. Eli has come SO FAR! But he still struggles with expressing his needs and wants. When he's upset it's complete guesswork on our part, because the communication that he does posses completely disappears. But for the most part, this is much better than it was in the past. We are especially thankful to Tipton County Preschool for our son's growth in this area. His Proloquo2go app has also been a tremendous blessing. And let's not forget to express gratitude to Buzz Lightyear and the Toy Story Army soldiers, who give Eli many good phrases to script appropriately in context - phrases such as "Go away!" and "Come on, let's move!"

Working on Goals Takes Patience

I've already shared some stories of success on Facebook, such as tolerating haircuts and dental visits. Giving visual help and breaking things down to teach incrementally helps so much, but this takes time and patience. Haircuts took 30 minutes a day, Monday through Friday, for about two months. Dental visits took closer to an hour if you count the commute, Monday through Wednesday, for about two months. And I don't even want to think about how many hours I've spent sitting on the bathroom floor, giving encouragement ("Big boys use the potty, not diapers!") and reading books...off and on for THREE YEARS! God is definitely teaching me patience. But it's worth it, because with maintenance work, Eli seems to be retaining what he's learned.

Please Don't Let Me Be Misunderstood

I'm probably forgetting some of the difficult things we face as a family and that Eli faces as an autistic individual. But this blog post is certainly long enough! I decided to write about the challenges all at one time because I wanted to say it and be done with it.

So finally, let's end with this scenario, copied from an email to the other special needs parents at my church. This is an example of how autistic people can be misunderstood, even by professionals:

"The process of Eli's formal diagnosis was a nightmare. We pursued it for our son's educational needs and so that our insurance would help to cover therapies. It took us over a year to finally get this diagnosis because they lost our paperwork. (The lady at the front desk even lied and told me she had our paperwork right in front of her when I called at the three month mark!) Then, when we went in March for Eli to be tested, the place looked like a prison or hospital - 70's industrial architecture, complete with three-story vaulted ceilings and cinder block walls. It's a large building, yet we only saw 3 or 4 people the whole time we were in this dim and echo-y place. Eli didn't even want to go inside and kept lying in the floor and saying, 'Noooo!'

"One of the men who tested him was a student who was working on his practicum. This fellow didn't seem to be familiar with the test he was giving and had difficulty reading the script on the back of the cards the WHOLE TIME. Obviously, this caused Eli to struggle with taking the test in general. They pushed through all sections in 3 and 1/2 hours, which was far too long for Eli to be able to cooperate. When they finally came back with the diagnosis, they declared that Eli has a low IQ and is intellectually impaired. I highly disagree with this assessment. Eli knows shapes, colors, can count to 100 by 1's, 2's, 3's, 5's, and 10's, and he can read on about a high 1st/low 2nd grade level. He was NEGOTIATING with Kevin with his communication device Monday night! He does not have a low IQ, but this is now his formal diagnosis.

"We paid over $1,000 out of pocket, and now Eli has a bogus diagnosis to go with his semi-accurate ASD one. I say semi-accurate because they labeled him "moderate." In that setting, yes, he was moderate. At home and church and school he would likely be considered "high-functioning" because he's comfortable with people and surroundings, and he's not being forced to perform for hours."

I share this experience with whoever has made it this far because I want to end with this advice:

Don't make assumptions; instead, presume competence. Don't be quick to judge; instead, extend grace and love. It's really simple, actually. "So whatever you wish that others would do to you, do also to them (Matt. 7:12)." Even if they aren't like you.

"I don't know about this..."

"I did it!!"