Autism: What I’ve Learned as a Parent

The slide show above shows a few pictures of my son Tyler. He is now 12 years old and is my youngest son. For those of you who know me or have been following my blog, you know he was diagnosed with autism at age 2. Someday I will gather the energy and composure to blog about some of the experiences we’ve encountered together and separately as a result to the public’s lack of knowledge, ignorance in some cases and complete lack of intolerance for anyone with a special need such as autism. For now, however, I feel a good starting place would be to share with you some basic but some of the most important tips I’ve learned about caring for a child with autism.

One of the best tips I ever got that has stuck with me (out of necessity) over the years is:

“Pick and Choose Your Battles Wisely”

That doesn’t sound like particularly wise or ingenious advice I know; but trust me, this will become something you think about every day when trying to decide which issues to push and which to ease up on. There are honestly some battles that are just not worth fighting when it comes to a child with autism. They are different for each family but as a single mom, I have to tell you that I learned quickly what was more important, fighting with my son over taking a bath before bed (that would literally last for hours and end up with a physical meltdown that included him banging his head, kicking or punching holes in the walls, hurting himself, hitting me, etc., or letting him to go bed with a little dirt on him that night and having him bathe in the morning.

Don’t get me wrong, this is not a regular occurrence, he’s too smart for that! Over time it’s a little easier to tell when they are being stubborn because they don’t WANT to do something or if they are refusing to do something because of something related to autism or sensory issues, etc.

(Notice I did NOT say it gets EASY, I said it SOMETIMES gets EASIER!)

COMMON TRIGGER POINTS

For my son (and most kids with autism the following list are just a FEW of the most common trigger points that can cause meltdowns. If your child is misbehaving, acting out, doing something to self soothe (which can include biting themselves, hitting themselves, banging their heads, etc.), the first thing you should do (once you restrain them so they cannot continue to self-harm), is go through the list of trigger points; start by eliminating one thing at a time and sooner or later you should be able to determine what is bothering your child, especially if they cannot tell you.

The first sign my son showed as a baby that worried (aside than screaming all time which was due to sensory issues although I didn’t know it until later), was head banging. He would get frustrated or mad usually when trying to tell me something or when he wanted something and he would bang his head into the cinder block wall of our apartment, on the floor, the door, anything. He had a huge purple bump and bruise in the middle of his forehead all the time! I was worried to death! I took to him a doctor (at a free health clinic because we were uninsured at the time), and the doctor was an idiot. This is what he said.

Dr: “It’s nothing to worry about, it is quite common for children this age to bang their heads.”

Me: “I’ve never seen a child with a big bruise/bump in the middle of the forehead before, Tyler always has one, he hits it, cries, and hits again, cries, and on and on if I don’t get to him fast enough.”

(In background – Tyler bangs his head, starts to cry and I run to get him)

Dr.: Laughs at Tyler banging his head and crying and says “There is nothing for you to worry about. He will knock himself out sooner or later and then he’ll learn not to do it anymore”

Which brings me to another tip: ALWAYS GET A SECOND OPINION, THIRD IF YOU NEED IT AND TRUST YOUR INSTINCTS. No matter what a professional tells you, nobody knows your child like you do. Never forget that. Doctors can make us feel intimidated, especially busy specialists who treat patients on medicaid (like my son), but you have to remember that you can always find another doctor, his opinion of you doesn’t matter one iota! All that matters is getting an EARLY and ACCURATE diagnosis for your child. Statistics show that the earlier the child receives a diagnosis and treatment, the better his outcome will be. Having participated in the birth to three program here in my local area, I have to agree. I learned a lot there in a short time that helped me be a better parent to my son.

Keep notes of what bothers them, what time of the day, where, environment, etc. and it will help you later determine your child’s individual trigger points. Then you can plan your activities around your child’s needs. This is especially important for single parents. (I will share a funny story with you at the end of this post about how I started to learn about trigger points. It was not funny at the time but it’s hilarious now!)

Check these trigger points first:

• (For young or non verbal babies and children) – Is anything causing them discomfort? Check their seat, are they sitting on something? Is something itching them? (clothes tag, etc.), check for physical ailments (headache, stomach ache, etc.)

  I know this seems like regular kid stuff but remember, your child IS a regular kid! He or she just has a few extra special unique qualities! They are children who happen to have autism, NOT autistic children. I believe remembering this rule is very important for your child’s well being and for yourself as well.

• Is the child is hungry or thirsty?
• Is the child is tired or sleepy?
• Noise, Lights, Colors, Temperature – Pay attention to your environment and imagine everything magnified by 100x

• Was there an unexpected change of routine or a change in the plan for the day? If I say we will go to to store A first, store B second and home and change that in ANY WAY, SHAPE OR FORM, I have disrupted Tyler’s entire world and sent him off into a world of confusion. As they get older, they must learn that things cannot always be the same, but to some extent, almost all people with autism will do better the more structured their environment and routine is. You’ll notice MUCH better behavior on a structured day than on a day with no structure.
• This is related to the issue above – Change. I should add that a change in anything can set your child off. If your son is used to eating peanut butter for lunch with milk and popcorn and you run out of milk, that could do it as well.

“WHY” MATTERS!

Never let anyone tell you that “it doesn’t matter why” your child is displaying a particular behavior or aversion, etc. There are many doctors, therapists and teachers (even special ed teachers) who are under the misguided belief that “why” doesn’t matter because discipline alone will TEACH them to correct the unwelcome behavior at issue.

It is my experience that this is not just inaccurate and ineffective but CRUEL to children with Autism or other sensory/cognitive disorders. FORCING a child to perform a particular task can be absolute TORTURE for them!

It’s much easier, faster and CHEAPER for a teacher/school who is understaffed, underfunded and has more children with special needs now than ever before to believe and/or practice this because it’s easier for the teachers! To determine what is causing your child to become upset enough to act out takes time and effort (and care!), discipline does not. They simply punish them by taking away recess, giving them detention, referrals, suspensions, etc. and then it’s out of the teacher’s hands and your child is tabled a “problem child”. In extreme cases, this can even become abusive, as was the case with my son. The punishments for his “behavior” issues (I’ll tell the story later), became cruel and INHUMANE. Please remember this so that this does not happen to your child. These children will not/cannot respond to this type of strong discipline. The actual cause of the behaviors are being untreated, how can punishment HELP the child? We have to remember that that is what we are all here for, to help the child not just do what is easiest for the teacher.

An Example of why WHY MATTERS

My son Tyler’s senses are oversensitive to a point that would drive most of us to madness. However, since he doesn’t know any other way of living, he finds ways to cope with the “invisible to the eye” difficulties he must live with. (These coping mechanisms are sometimes the reason WHY he would behave in a way that some school “professionals” (and one ex-pediatrician) want to “DISCIPLINE” your child into doing away with. This is pure laziness on their part!)

ABOUT SENSORY ISSUES

These sensory issues can come and go or show up one day out of the blue and never go away. The number of possible sensory triggers could be endless, because even the most high functioning child suffering with autism who is completely verbal is not always able to explain WHY they CANNOT do or HATE to do something. Most (especially younger) don’t know why, or how to fix it, they are just trying to deal with an uncomfortable at best and torturous at worst task that you are asking them to do. (Keep in mind they cannot figure out WHY on earth you would even ask them to do this horrible thing you are asking! It makes no sense to someone with concrete thinking why anyone would ask them to do something that they can’t see the purpose of!)

A few of Tyler’s sensory issues include or have included:

• A painfully acute sense of hearing – Loud noise, especially a lot of people talking like in a lunchroom or certain music, or people singing – Tyler explains how this feels to him as:
  

  “It feels like popcorn is popping inside my head” (Said while holding his head with both hands as if he had a migraine)

• Spatial confusion (for lack of a better name) – Many kids rock as a self soothing mechanism and many times it’s because they are not able to tell where their body is in relation to where they are. Rocking somehow helps that sensation. For Tyler he had a phobia of places with high ceilings, and it took at least two years until he could explain why. Here is how he explained his phobia:
  

  “I am afraid I am gonna float up to the top”

• An acute sense of smell. For example, Tyler has been known to walk in a house, smell dinner cooking along with a scent he isn’t used to or doesn’t recognize and he will scream and RUN out of the house as if it were on fire!
• Oversensitivity to wind: Imagine that when the wind blows, it feels as if it is burning & tearing through your skin
• Oversensitive feet. Tyler must wear socks at ALL times. Trimming his toenails is impossible! As a baby, he screamed bloody murder anytime I had his feet bare, especially on grass. The first physical therapist that helped us diagnose Tyler at age 2 was able to determine that the grass blades caused pain to Ty’s feet, she explained it as:
  

  “Try and imagine that each blade of grass felt like razor blades cutting the bottom of your feet, that could be what grass feels like to Tyler”

  Ty was not able to communicate at the time but realizing this as a possible cause for his pain, I kept socks and/or shoes on him at all times and the problem was SOLVED INSTANTLY!

• An extreme aversion to certain textures, smells & tastes. Imagine a texture, smell or taste so repulsive that just the thought of them made you feel like gagging or in extreme cases, would cause you to either vomit or feel as if you were going to. Tyler has been a VERY picky eater since he was a baby. This is an ongoing issue that I have had to relax on a lot because there is NO WAY to force a child who has these sensory issues to eat or drink something that can make them vomit. Personally, I would never do that to my child, there are other ways of getting nutrients into them. (Usually without them knowing lol) I’ve tried everything, every therapist that has worked with him has tried everything, nutritionists, you name it, there is just no easy fix for this problem. It’s one of the battles you have choose wisely.

  Tyler has a former classmate that actually vomits if he sees any food touching another food. God Bless his parents, can you imagine how difficult that would be with every meal and snack not mention outings when people may be eating in public? This child is completely non-verbal which I can only imagine makes things more difficult for both the child and parents. They are two of the best parents I’ve ever met and probably will ever meet.

• Other commons issues Tyler shares with other ASD kids are bathing (water, soap – heat/cold/slimy/smells), etc., changing his clothes (once he wears something It takes a very good trick, bribe or miracle to get new clothes on him. This sounds like laziness or just being dirty but in fact when you consider all the possible sensory issues (that he doesn’t explain and therefore cannot always explain – he knows he hates clean clothes but can’t say why), it could be any number of things. The clothes are not soft and stretched out like they are when you’ve worn them all day, they smell clean (detergent, fabric softener, etc), he is being forced to put on a “foreign” object which for whatever reason, absolutely feels like torture to him.

Acknowledge, Appreciate and Applaud Your Child’s Growths

As a single parent of a child with autism, I have learned just how important it is to notice, acknowledge, appreciate and applaud each and every skill that Tyler shows growth in. I don’t necessarily mean the average childhood goals & milestones, because those are individual to each child with ASD and it is imperative that you don’t have unrealistic expectations for your child to the point that it makes him/her feel bad about themselves. At the same time, kids are clever and sooner or later they will learn how to manipulate you if you are not informed, prepared and on the watch for these behaviors.

A small confession: I have not yet mastered this and may never do so! I tend to be too easy on Ty and not expect enough and the older he gets, the more confused I am about what he CAN do and what he WILL do. I’m damned if I do and damned if I don’t because if I try to make him do something he cannot, I will cause him pain and damage his self esteem and if I allow him to CHOOSE not to do something because he doesn’t want to (but can), I will have failed him as a parent in preparing him for independent living.

I’m still working on this one and if and when I figure anything more out for myself, I’ll be sure to share it with you. If you have experience with this issue, I’d love to hear from you!

Considering all of the things I’ve been told over the past 12 years all of the things he CANNOT and WILL NOT be able to do, when he does one of those things, no matter how big or small, it makes so proud that my heart literally fills with joy, and I want to jump up and down and yell like a cheerleader “Way To Go TY!”, “I Knew You Could Do It!”, “Good For You Baby! You Show Them!”, every time. With each accomplishment it becomes more clear what a blessing these moments are. It reminds me of the incredible fighting spirit of my little boy who just “kicked ass” at whatever he just did. NEVER let ANYONE, no matter what title or letters may follow their name, tell you what your child will NEVER be able to do because I can tell you from personal experience, they can do whatever is meant for them to do and nobody here on earth knows those limitations.

Communication:

One of the things I’ve had to learn was how to communicate with my son in different ways at different times of his life so that we can understand one another. This is so important because one wrong step and you are on a slippery slope to a place you don’t want to be! A simple lack of knowledge and understanding of what he is feeling, thinking, or how he is processing what I’m doing or saying can lead = miscommunication. When this occurs, the next step is mutual frustration and before you know all hell has broken loose and my child has “lost it” and is having an official melt down. Learning about your child opens your mind up to the possible causes of the current issue, which can lead to an alternate route that may just you to get your destination with your child calm and content and your sanity somewhat intact!

For instance, in our case, when I try to look at things from Ty’s perspective (as well as I can from piecing little bits of information together from his descriptions, behaviors and our experiences together), the world is a completely foreign and utterly confusing place for this little boy. There is no way I can explain in one blog post what it’s like for him but I’ll give you a few little insights that he has passed on along the way over the past 12 years of his precious life.

I’ll tell you something firsthand, it is impossible for ANYONE to be patient and understanding 24/7, 365 days a year, for an entire lifetime, even when you love that person more the air you breathe. However, when I take a step back and try to put myself in his shoes, and try to imagine just how many things could be making this seemingly simple, everyday task (that I’ve taught him every day for the last 12 years), as difficult for him as climbing Mt. Everest would be for us, it fills me with guilt and shame for every single time I’ve had thoughts of “oh god not today”, “can’t he just be normal just this once”, “I can’t take this anymore”, among others (and yes ALL parents of ASD kids think these things several times a day, every day even though we know better). This is not to mention the gazillion times I’ve treated him as if he were a non-ASD kid and yelled, hollered, or scolded him for not doing something that to me is so simple, or for doing something strange, embarrassing, etc.

The list could go on and on forever and I continue to learn each day. I will share more about my son and what he had had to endure as I can because it is important that we combat ignorance and intolerance for our children. (For everyone).

I really hope that this will help someone out there, I know that as a single mom, there have been countless times that I have needed to have someone to talk to who has been through this or could at least understand what I was feeling at that moment. If you have a child with autism and need or want another parent who knows what you are going through to talk to, please feel free to contact me either through my blog or my email address (katdriggers@msn.com).

Remember this:

A U T I S M

• Always
• Unique
• Totally
• Interesting
• Sometimes
• Mysterious