Christianity & Autism

I have scoured the internet trying to find blogs of parents who are raising children on the spectrum in a Christian household and have come up empty.  I'm sure they exist, but whatever terms I was typing into my magical Google bar were coming up empty.  I decided there was obviously a need for blogs written by Christian parents to children with ASD (Autism Spectrum Disorder).  I'm not operating under the assumption that I have all the answers or that I'm by any means the most qualified person to be writing about this, but the more of us that blog and share our successes and failures, the more likely we are to help others who find themselves in the same struggle.

If you haven't already, please ready my post Introducing Dynamite.  I give a very thorough background to our journey into the world of autism.  It was a long, arduous, winding journey to get to where we are today.  I would have given my left arm (OK fine, probably not my arm.  But I might have sacrificed a toenail) for someone in a similar situation to walk the twists and turns with me, to learn from and bounce ideas off of.  There is no manual on how to raise a child on the spectrum in a Christ-centered fashion.  

I found that the therapy did not seem to align itself completely with what I saw in Scripture.  Because of my faith in God, I start with the assumption that Dynamite was not somehow exempt from the "Children, obey your parents in the Lord for this is right.  Honor your father and mother, which is the first commandment with a promise."  (I'm working from memory here, take it easy on me if it's not perfect).  As such, it was not unreasonable to expect my child to obey me.  I also began to notice that while the therapy he was receiving was very effective in teaching us about the challenges he faces as a result of his ASD and how to give him the necessary supports, it did not teach me how to use discipline to shape his heart and teach him to one day submit to his Lord and Savior.  I've found that as a parent of a child on the spectrum, so much of your time and energy is spent discussing how to alleviate a lot of the struggles associated with your child's ASD.  It's easy for the job of disciplining, teaching and instructing to get lost among all of the therapy and strategies you happen to be implementing at the time.

So, here is my approach to parenting my child as a WHOLE:

• Start by evaluating your motives.  Are you focusing your attention and energy on alleviating your personal suffering?  Or are you motivated by pursuing God's purpose for your life?  
• I realized that almost 100% of my time and energy was focused on alleviating my perceived suffering due to Dynamite's frequent violent and explosive melt downs.  It was making life difficult for me, and I wanted life to be easy, not difficult.  Unfortunately, that is not a Biblical concept.  We were not promised easy and convenient lives.  John 16:33:  "In this life you will have trouble, but take heart…I have overcome the world."  1 Peter 4:12:  "Dear friends, do not be surprised at this painful trial you are suffering, as though something strange were happening to you.  But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed."  1 Peter 2:20-21:  "But how is it to your credit if you receive a beating for doing wrong and endure it?  But if you suffer for doing good and you endure it, this is commendable before God.  TO THIS YOU WERE CALLED, because Christ suffered for you, leaving you an example, that you should follow in his steps."  Emphasis is obviously mine, but you get the point.  We were not promised easy, convenient, pain-free lives.  Accept your situation as it currently is, and take the focus OFF of yourself and ONTO Jesus.  Make his priorities your priorities and you will have taken the most important step.

• Make sure your understanding of autism is as complete as possible.  Do you know what supports your child needs in order to succeed?
• The internet is an amazing resource.  If you don't have access to therapists who specialize in autism, be your own advocate.  Read blogs of adults with autism to gain their perspective on navigating daily life.  Get to know your child's weaknesses and challenges so you understand the supports s/he needs to succeed.  For Dynamite, one of his biggest struggles is transitions.  So, in the beginning he needed to have a picture schedule every single day to show what we would be doing that day.  I had to carry it with us everywhere so he could erase each item once it was complete and see what was coming next.  He also needed multiple warnings approaching each transition to know that the transition was approaching.  Understanding your child's limitations is absolutely essential so that you can walk through each day feeling confident that you are not holding your child responsible for things that are outside of his/her control.  If I were to simply announce to Dynamite at the playground "OK, time to go home!" and expect him to say "OK Mommy!" and come running, and then discipline him for not complying, that would be unfair.

• Figure out who's driving.  Are you firmly in control of the car, or are you giving your challenging child the wheel on occasion?
• Who's driving the proverbial car of your parenting journey?  Is it you, or is it your explosive little bundle of joy?  If I was being honest, for a good chunk of Dynamite's life it was Dynamite.  The problem with that is that your child can sense when they're in control.  When a child like Dynamite can sense that he's really driving the car, it contributes to his anxiety because he knows that he has no clue how to drive.  He might be happy that he's getting what he wants in the moment, but over time he will become more and more out of control.  Here are some questions you can ask yourself to find out if you're in the driver's seat if you're not sure:

• Do you find yourself reorienting the world around said child hoping to avoid explosions, to the point of being unfair to your other children, spouse, friends, etc?
• Do you find yourself going back on previous statements you made in order to avoid a melt down?
• Are you frequently trying to comply with highly unrealistic demands to avoid a melt down?
• Do you find yourself looking the other way when you see your child being disrespectful or disobedient because you don't feel like fighting the battle?
• This certainly isn't a comprehensive list, but it's at least a start.  In the beginning of this journey I would have given a whole-hearted "Yes!" to every single one of those, so do not feel badly if you answered yes to some (or all) as well.  Children like Dynamite are challenging and draining in a way that most other children are not, and it is easy to get worn down and slip into "survival mode"

• Disobedience, search and destroy!  If you're unsure where to begin, search for a defiant spirit and start your battle there.
• Life with Dynamite felt like a hot mess.  We were spiraling out of control, and it felt overwhelming trying to figure out where to begin.  After committing the matter to prayer, I felt the Lord telling me to seek out disobedience and start there.  Many of Dynamite's blow ups and explosions were over things not being right in the world according to the way he saw things.  He wasn't being disobedient, he was just overwhelmed and didn't know how to handle it.  We bore with him during those things with as much patience as we could muster with the help of the Holy Spirit.  But deliberate disobedience needed to have clear and consistent consequences every time, and we needed to find something that spoke to our son.  I've found that the most popular form of discipline in most church circles is spanking.  I am not opposed to spanking (as you know if you read the Introducing Dynamite post), but we found it to be completely ineffective with Dynamite.  Dynamite's kryptonite happens to be computer.  He LOVES watching Youtube videos on the computer, and taking computer time away turned out to be a strong motivator.  I'm sure your child's motivator will be different, but it should be relatively easy to figure out.  Just think about what they gravitate to throughout the day.  When we asked Dynamite to do something (and the request was reasonable), if he chose to disobey we enacted immediate consequences and followed through, no matter how difficult.

• Patience, patience, and more patience.  Seriously….P-A-T-I-E-N-C-E
• As I mentioned earlier, reading blogs written by adults with autism really helped me to gain perspective on Dynamite and foster as much empathy as possible.  I found the more empathy I had, the more patience I had for a lot of Dynamite's daily "explosions".  Also, the most obvious answer if you're lacking patience…daily time with the Lord.  Children with ASD are typically bad sleepers, so it can be hard to find time to spend with the Lord each day.  I personally sacrifice the extra 30 minutes of sleep and got up extra early to have a daily quiet time.  Morning might not be the best time for you, but make sure you are making that a priority in your life and carving out time for that each day, no matter what the cost.  It will help to keep your priorities in check.

If you find yourself walking a similar path, I encourage you to follow my blog and comment so we can walk the journey together.  God bless!

Introducing Dynamite

This is a long and fairly detailed background for my oldest son, "Dynamite".  I'm calling him Dynamite because he has a tendency to explode without warning.  I provided a lot of detail for the benefit of those who might be wondering if their child has autism and is looking for stories from other parents of children on the spectrum.  If that's not you, feel free to skim and you'll get the basic idea.

I am 31 years old, I'm happily married and I have two small boys, ages 4 1/2 and 2 1/2.  They are adorable, handsome, energetic, feisty, challenging and sweet.  Oh, and they have autism.  

This post is about my oldest son, Dynamite.  He was challenging from the moment I conceived him.  It was a very difficult pregnancy fraught with morning sickness, bleeding, itchy rashes, and many other ailments I've no doubt blocked from my memory by now.  In addition to the physical struggles, I had major anxiety about the well-being of my baby.  I was taking a Class C medication to prevent seizures during my entire pregnancy and I often (OK, always) worried about the effects it might have on my baby.  I'm not kidding, I would bump into a doorway with my belly and spend the next three days worrying that I had given my baby brain damage.  It was pathetic.  These anxieties were compounded by the fact that I kept feeling my baby shudder, almost like he was having little seizures every so often.  I told my husband, my OB, everyone, but no one really believed me.  The hours spent crying over the imaginary "brain damage" from the "door incident" may have had something to do with that.

With all of the stress from my pregnancy, I couldn't wait for it to be over.  My OB recommended I be induced two days before my due date because I was already dilated 3-4 cm.  I jumped at the chance.  The labor progressed as expected until they broke my water.  At that point Dynamite had "variable decels" (non-reassuring heart tracings) and they had to insert a tube into my uterus that would pump water back inside to lift his head off of the umbilical cord it was pressing on.  (Side note, this device also meant that when I finally pushed Dynamite out, water came shooting out of my vagina and soaked the OB.  Not at all awkward).  My son was born with good apgar scores.  While they were weighing him, my husband shouted to me, "Hey, he's doing that thing you've been talking about!"  His arms shot up and then trembled while they slowly came back down, as did his legs.  I had a moment of "A-ha!  I'm not crazy!" followed by "Oh my gosh, what's wrong with my baby?!?"  

The doctor and nurses seemed somewhat concerned by it, but mostly dismissed it saying he probably just had an immature nervous system and would grow out of it.  But the tremors continued and we ended up being referred to a neurologist.  They were concerned about cerebral palsy since he had tremors and abnormal reflexes, but by the time he was 6 months the tremors had disappeared and his reflexes had normalized.  

I should also mention that from the time he was 2 weeks old until about 3 months Dynamite had colic.  It. Was. A. Nightmare.  If you are a parent out there trying to survive a colicky baby, my heart goes out to you.  All I can say is hang in there, you will get through it.  And the nervous tic you've no doubt developed in your face will eventually go away (mostly).  Once he outgrew the colic and the tremors, he was a very healthy boy.  He met all of his milestones appropriately, with the exception of imitation (games like peek-a-boo).  He was always extremely intense, though.  If he was playing with a toy like a shape sorter, he would try to push the shape through the hole exactly one time.  If it wouldn't go through, he would scream and throw the toy across the room.  My husband and I chuckled.  What an amusing phase he's going through!  Yeeeeaaaahhhh…phaaaaaase…. 

(The closest approximation I could find to Dynamite's toy frustration)

When he turned 12 months we noticed something strange - he didn't like to get anything on his face or hands and rejected the vast majority of solid foods (he had eaten all types of baby food without issue).  We initially tried the hard-line "eat this or you don't eat" approach and he was literally choosing not to eat.  We did everything we could think of to get him to eat, but it continued to be a daily struggle and we made very little progress.  By the time he was 18-24 months I dreaded every meal time.  He would inevitably flip out about something getting on his fingers or face, spilling some of his food, something being on the wrong side of the plate, etc.  Each time he would start screaming and throw everything on the floor.  We initially punished him by taking him down out of his high chair and telling him he was all done with meal time, but after using this approach for quite some time we saw no progress.  As a relatively new mom I was panicking about his nutritional needs, so when he was 2 we decided a different approach was needed and started spanking him for this behavior.  We tried this approach for quite a while, again with no results.  Around this time we started receiving OT through Early Intervention to help with his sensory and feeding issues.  The therapy helped somewhat, and I did everything I could to follow the plan his therapist laid out for me.  In spite of all of these efforts and interventions, Dynamite's diet remained extremely limited.

By the time he was about 2 1/2, life was completely out of control.  He came down with pneumonia and had to be hospitalized for 4 days.  It was a nightmare because he couldn't stand the sensation of the tubes in his nose because of his sensory issues.  It was a continual battle of him wailing, screaming and trying to pull the tubes out of his nose while we held his hands down trying to explain that he needed the oxygen to get better.  I slept on the couch in his hospital room, and I use the term "slept" quite loosely.  The different nurses, doctors and respiratory therapists would come in every 20-30 minutes to take different vital signs, empty garbages, listen to his lungs, etc.  Also they kept trying to turn his oxygen down prematurely so the alarm would sound loudly every 15 minutes or so all night as his oxygen levels would fall below 86%.  I protested this quite strongly to the nurse and was essentially scolded for questioning their method.  This whole ordeal happened the week before we were supposed to be moving out of our apartment and into our new house we had purchased.  He was finally released from the hospital after 4 days and spent one final night in our apartment.  The very next day he had to be put back on oxygen.  This was conveniently (insert sarcasm font) the day we moved into our new house.  He spent the first week in our new house on oxygen.  All of the upheaval and changes overwhelmed him and things went downhill quickly.  

Discipline was completely ineffective on him.  I was militantly consistent, the expectations were crystal clear.  I never backed down from what I had said.  I was certain that as long as I was fair and consistent, that I would have perfect, well-behaved children.  Instead, my son was out of control and seemed to be completely immune to discipline.  I was at a complete loss.  It was around this time that the word "autism" was first mentioned to me.  A friend of mine said she saw a lot of red flags and that I might want to have him evaluated.  This friend happened to have an educational background in autism, worked with autistic children for a living and had an autistic son herself.  She obviously knew what she was talking about, so I decided to Google autism since I knew nothing about it.  When I read the list of red flags I almost fell out of my chair.  There they were!  All the little "Dynamite-isms" as we had come to call them.  I couldn't believe it.  My husband and I shared our shock - clearly this was the explanation for all of my son's issues!  We scheduled an evaluation for him and thought we would finally have some clarity.  Instead, the individuals evaluating my son said that they saw no sign of autism, and instead determined he had anxiety.  They recommended attending therapy with them, which we did for a couple of months but found it to be completely unhelpful and ineffective.  We were back to square one.

Things had normalized a bit with Dynamite as he had adjusted to his new living arrangements.  We survived life by just accommodating all of his "quirks".  You don't like the milk on that side of your plate?  Don't worry, I'll move it!  Is that bit of peanut butter on your finger upsetting you?  I'll wipe it off!  Is that toy upsetting you?  Don't worry, I'll help!  We had to continually re-order the entire world to match Dynamite's expectations to try and keep the melt downs to a minimum so we could survive our days.  This was the complete opposite of the parenting approach I had always envisioned, but we couldn't find any other way.  It was the only thing that seemed to restore some sense of order to our house.  But it was completely...and utterly...exhausting.  We had to continually stand at the ready to intervene when Dynamite showed the first sign of frustration to prevent him from losing it.  

Finally, by the time he was 3 1/2 we had moved beyond the point of "coping" and needed a real solution.  I reached out to my friend, the same friend who had originally mentioned the idea of autism to me.  She came over to watch him play and told me she still had all the same concerns she had a year ago.  She recommended I get in touch with the head of the therapy center that her son was attending to see if they could give me some guidance.  I set up an appointment with them and met with the director of the program.  He observed Dynamite playing and recommended that we get him evaluated again.  He was able to recommend some good psychiatrists that he trusted, and I contacted one of them to schedule an evaluation.

The psychiatrist was very thorough and listened to all of our concerns about Dynamite.  Even more importantly, he believed me.  This was the piece that was missing from the last evaluation.  At his first evaluation, anything I reported to the evaluators that wasn't directly observed during their evaluation was dismissed.  This psychiatrist took all data into consideration - what my husband and I were reporting as well as what he witnessed during his evaluation.  He administered the ADOS and a few weeks later we had an appointment to go over what he found.  He gave Dynamite a diagnosis of 299.0, Autism Spectrum Disorder.  At this point I didn't feel sadness, I felt relief to finally have an answer as to what was going on with my son.  We began therapy at the therapy center and our life did a complete 180.  I began to see life through my son's eyes and understand that his behavioral issues were not defiance, but an inability to cope with the world. I realized that when he was calm, he would always do what I asked without thinking twice.  It was only when he was in the middle of a melt down that all of the behavioral issues would rear their ugly head.  He needed help and supports and most of all understanding.  He was like a different child.

Dynamite attended therapy for about 3 months before he started preschool.  He did great in preschool for the first two weeks, and then once again the wheels came off.  His therapy sessions ground to a halt - he spent the whole time having a melt down in complete non-compliance.  All day every day was spent carrying him upstairs to his room while he screamed, hit, kick, threw things, even tried to bite me.  It was exhausting and terrifying.  He was getting bigger and his melt downs were getting more violent.  I couldn't figure out why the methods we had been using were so effective initially, and now we seemed to be back to where we had started.  

I reached out to a dear friend of mine who has a daughter a couple of months older than Dynamite to see if she had experienced this recently with her daughter.  I was thinking maybe it was a developmental thing.  She told me it actually sounded like her daughter when she turned 2.  It suddenly dawned on me, Dynamite is hitting the terrible twos!  Children with autism are developmentally delayed, and as I mentioned I had seen no sign of willful defiance that you expect to see in your 2 or 3 year old.  (For instance if we were just calmly cleaning up the toys and I said "please put the dinosaur in the basket" he would just do it without protest).

I realized that the therapy addressed only his challenges specifically related to autism.  It didn't address the stubborn defiance that comes with a two year old (or in my case, a four year old).  I had to begin sifting through his behaviors to try and determine if it was an autism thing or simple defiance.  If it was autism, we provided more supports; if it was defiance, he was disciplined.  

He is now 4 1/2 and we have had our share of ups and downs.  It is not an exact science and every child with autism is different.  We have been feeling our way through, making plenty of mistakes along the way.  But God is gracious and has provided us wisdom and insight as we need it to prepare our oldest son to succeed in life, and we hope to know the Lord some day.  I started this blog to reach other parents to children with similar challenges.  I want to document our successes and failures, so maybe the next person coming along can pick up where I left off.  God Bless!