What Autism Has Taught Me

 

I've learned a lot from my son. I know just about everything you would ever need to know about elephants, and could name more major league baseball players than most moms. And aside from that, I've learned a lot about Autism.

Throw any Autism acronym at me and I could tell you what it stands for. If Autism is old hat to you, you too know the lingo. If you're new to it, you will soon learn what ABA and SPD stand for, plus a laundry list more. I've read all the books. I've heard all the theories on what causes Autism, and shuffled through them throwing most to the side.

But most importantly, I've learned a lot about myself and life in general because of Autism. With today being World Autism Awareness Day, I thought I would share what Autism and my son have taught me.


1. Patience! I learned this one right away. Parenting in general helps teach patience, but parenting a child with Autism tests your patience at a whole new level. Not that I am perfect at it, because I do have my moments. Mornings are particularly hard when we are trying to get out the door and Jacob decides to watch one more baseball video rather than get his shoes on.

2. Not to judge others: I admit, before Jacob was born, I was pretty quick to judge other people. I'm sure I looked at the parents of kids who were acting up wondering why they couldn't control their children. You know how people without kids of their own always think they have all the parenting answers. Now when I see a child having a meltdown or a mother who looks like her patience is being tried, I don't give them a disapproving look. Instead I smile, because I have no idea what struggles they are battling.

3. To stand up for what is best for my son: Typically I am a pretty quiet person. I follow the rules and keep my mouth shut. But I have learned pretty quickly that if I am not speaking up for my son, no one is. I am his advocate. I am his voice. And I will make sure he has what he needs to succeed.

4. Times when I feel the most broken, are actually times when I am my strongest: I have my moments where I just lose it, when I feel like the worst mom ever. There are times when I feel I can barely keep going. But when I look back at those moments after the fact, I realize how defining they were, and how strong I actually was even if I didn't feel that way.

5. Recognize and appreciate the small things: When you are a parent of a child with Autism, you really view each day differently. I don't need anyone telling me "enjoy each moment" or "someday you will miss those days". As a parent of a child with Autism, I very much live IN THE MOMENT. I don't know what the future holds for my son. We live in a very narrow moment enjoying every small detail. Typical behavior that goes unrecognized by parents of neuro-typical kids, can bring a tear to my eye. My son put his socks on without asking for help. He attempted to go to Sunday School with his peers, even if it lasted all of a few minutes. Jacob dried off on his own after a shower. He had a friend over and actually PLAYED with them. He asked about me, about my day. He didn't play baseball in the store. He wiped his own bottom. He actually WANTED to play in the snow and even suggested going down on a sled. He's learned to use a scooter, zip his coat, unwrap a tootsie roll, turn his sweatshirt right side out. You get the idea. Things that to others are automatic and never acknowledged, do not go unseen here. There is joy everyday in our house in the small things, and we take things one day at a time.

6. Savor every moment: This kind of goes with appreciating the small things in life. Every "I love you", every snuggle, every small connection with your child means so much when they come so infrequently. Don't get me wrong, Jacob is a loving child. He'll ask to snuggle or cuddle in bed. He kisses us goodnight as we tuck him in bed. But finding a deep connection with him at times is difficult, at least more difficult than with our 2 year old who daily gives me affirmations of her love.

7. Pay attention to my own social skills and body language: I feel like I am pretty much an expert at social skills. When you are constantly reminding another human being about their actions, you become hyper aware of your own.

8. Sometimes people are cruel, but most times not: When I am meeting someone for the first time, I try to always slip into the conversation that my son has Autism. I do this for a few reasons. The first to spread awareness and just open up that dialog. The more it is out there and people understand, the less hurdles my son will have as he gets older. It is always interesting to me how people respond. Some truly don't know much, especially when I say "Aspergers". And for others it seems that somehow Autism is connected to their life as well. The second reason I tell people is so they understand my son. Looking at Jacob and even talking to Jacob, you wouldn't really suspect that he had Aspergers. More often than not, when I tell people and they have met Jacob, they respond by saying they would have never guessed. It's not that I am telling them as an excuse for any of Jacob's potentially odd or excited behavior, but for understanding. I have found when people know the whys behind Jacob's behavior, they are less likely to be judgmental and pass it off as bad parenting, and instead are accepting. Sure the occasional stranger has been known to be cruel and rude when Jacob is acting up, and be assured that I let them know why! And of course kids always can be hurtful to anyone that is different. But for the most part, people are receptive to Jacob when they have an understanding.

9. Labels don't have to be a bad thing: For many years I was scared of my son being labeled. That fear kept us from getting him diagnosed at an even earlier age. Getting that diagnosis and official "Aspergers" label was the best thing we ever did. It felt like the tables were turned from that moment on, as if we now held the power to control Jacob's future. He was being labeled anyway whether I knew it or not, but by having him diagnosed, it just gave him the right one.

10. Eye contact isn't that important: It really is overrated. I have learned that Jacob actually hears me better when he isn't looking right at me. But I still catch myself on occasion saying "Jacob, look at me" when I want his attention.

11. It's ok to not know why: This one took a while. For the longest time I was obsessed with knowing "why" Jacob had Autism/Aspergers. What caused it? I read all the theories, which most I dismissed. It always went back to guilt and feelings of somehow I caused this or didn't do the right thing to prevent it. I've learned it really doesn't matter what caused Jacob's Autism. Looking at the "why" means looking backwards, and looking backwards isn't going to help Jacob. So I try to focus more on the present and staying positive for the future, and no more self blame.

12. Embrace my child for who he is, not for what I thought or dreamed he would be: Every parent has dreams for their child. Many times those dreams come before they are even born. I know mine did. You have visions of what your child will be like and your life with them. No parent's dreams include Autism. And again, this is a hard one for me. My husband and I both struggle with this from time to time.

13. Unconditional love exists: Even in those worst moments when Jacob is lashing out, hitting, screaming, and melting down, I am aware of how much I love my son. Sure those times are frustrating and hurtful, but it's in those moments when I feel my heart crushing inside. When I know I would do anything to take away my child's struggles. It's in those hard moments when I know what true unconditional love is.

14. To find potential sources of sensory overload in every situation: The way I view the world is completely different now that I know what could set Jacob off. When he was little, we would cart him off to carnivals, parades, restaurants, even Walmart, without a clue as to why he would cry and scream. Too loud, too crowded, too bright, too exciting, it can all be too much! It's not that we don't do those things today, we are just more prepared, and make sure Jacob knows what is expected and what will be happening next. Surprises and Autism are not a good combination.

15. Life goes on: Autism is everyday. But so is laundry, and making dinner, and errands, and appointments, and school, and work, and you get the idea. More than anything, Autism is not the end of the world. There is still love. There is still laughter. And there is still life with Autism.

Lost Mommy

The other night I lost it.

Completely broke down, lost it.

I mean crying-so-hard-that-the-next-day-you-can't-even-put-your-contacts-in-your-eyes-and-you-feel-like-you-have-been-run-over-by-a-freight-train-numerous-times kind of lost it.

I usually hold it together pretty well. I don't fall into a pity party attitude regarding Jacob's diagnosis. I don't let the exhaustion get to me. I keep it together and remain strong. But sometimes, every once in a great while, it all gets to be too much and I break.

Let me back up a little bit. The last few weeks have been hard. It started with a call from the school nurse saying Jacob was in her office with a bad cough and wheezing. I had known he had a cough, but Jacob insisted he felt fine and I sent him to school assuming he was just getting a cold. The nurse was adamant that Jacob be seen by a doctor soon, so I picked him up from school and whisked him to the doctor.

After listening to Jacob's lungs, the doctor believed he could have asthma. She sent him home with an inhaler and instructions to return in a few days if not better.

Well, it didn't take long to get another call from the nurse. Jacob was not getting better, and in fact had gotten worse. We returned to the doctor, who ordered a chest xray to rule out pneumonia. She also put Jacob on an oral steroid.

"It may cause him to be a little more hyper than usual," were her parting words.

"You do know that he has ADHD, right?" I replied.

"I am so sorry," she said, "Good luck!" and we headed out the door with a new inhaler, RX in hand, and instructions to again return in five days. Luck. We were going to need it.

Let's just say, Prednisone and ADHD are not a winning combination. Jacob was full of energy to say the least. We decided to do the best we could and just get through the five days. Unfortunately that meant many hours of Jacob playing Wii, because it was just easier than scrapping him off the walls.

But the worst part, he was starving all the time. I found him standing in the pantry shoving cupcake after cupcake into his mouth with the wrappers around him as evidence. My mind even contemplated putting a lock on the pantry door. Watching our seven year old in the pantry was worse than any ABC After School Special about bulimia that I remember watching in the 80's.

And of course, Jacob also couldn't sleep. So those few precious hours at the end of the day I reserve for catching up on reality TV and margaritas were interrupted by a completely wide awake Jacob playing basketball at 11:00 pm.

Somehow we made it through those five days.

Besides gaining 3 pounds in that short time, the medicine had worked. I was incredibly thankful when we returned and Jacob's lungs sounded clear and his cough was almost gone. The doctor officially diagnosed Jacob as having asthma, and again sent us home with a different inhaler. This one would become his daily inhaler and be used twice a day.

I didn't give much thought about the inhaler. Jacob had used them before with no problems, so why would this be any different? Usually I immediately read all the warning labels associated with any meds. I naively assumed all inhalers were the same tossing the information in the trash, and Jacob began taking it two times a day.

That's when things got really difficult.

Suddenly Jacob was upset about everything, and particularly upset with his dad. He started hitting again. Arguing with the neighbor kids. And screaming like I have never heard him.

The one night Jacob stood on the stairs and just screamed. He was mad. His dad had turned off the baseball game he was watching because Jacob was supposed to get in the shower. Instantly the baby sister started crying. She was terrified of her brother, and I was shocked as I had never heard him like this before. I removed the baby sister and settled her in another room with Dora, and returned to hear Jacob scream at his dad, "SHUT! YOUR! MOUTH!"

Where was this coming from? We don't talk that way, and all over something so trivial. It's not that Jacob doesn't have these moments. But this was turning into moment after moment, after moment. The entire week had been like this. Was this some kind of turning point? Was Jacob turning into the defiant child I read about that many parents of kids with Aspergers deal with on a daily basis?

The next day was the same. More hitting, more yelling, more arguing. But the worst was the mocking and laughing at everything my husband and I said. That night, my husband quickly volunteered to run an errand for me and then had planned on stopping to see a friend. He needed a break, and I didn't blame him. Jacob had been picking at my husband for a week at that point, and I could tell it was wearing on him.

That night was when I lost it.

I was trying to put on my bravest "nicey-nice" smile, taking a kill 'em with kindness approach with my son. I figured the more pleasant I was, it had to make the evening better, right? My goal was to just get through the night with as little drama as possible.

It was going fairly ok, if ok means that the baby sister was sleeping prior to Jacob deciding to give me a little "pat" as he called it when I suggested he get ready for bed. As I tried snuggling with my son to calm him down, I realized he didn't even care.

I kissed him good-night and before I had hit the bottom stair, the tears were falling. Even good mommies can't always hold it together.

The weeks had been too much. Too much stress, too much yelling, too much walking on egg shells. It had all been too much, and the waterworks kept coming.

I cried for my son, for the fact that I never will know how "real" our connection truly is, nor will I ever know exactly how he feels.

I cried for my daughter, who too often has to play second fiddle to the demands of her brother, and has to witness his meltdowns,

I cried for my husband, and for the helplessness and failure he was feeling as a father, and for the grief he felt for the father/son relationship he had envisioned long before Jacob was born.

I cried for our marriage that typically gets brushed aside instead of tended as it should, and for the wife I had intended to be when 15 years ago we married and had no idea the daily tole Autism can take at times.

I cried for the mother I thought I always would be, but somehow never have the time and energy to do it all, and I wonder every day if I am letting my kids down.

And I cried for myself. For all the times I feel lost in the world of Autism. For all the days when there is no "me" to be found. For all the goals and dreams I had for myself that have been shelved away, much like many mothers.

I know it was selfish. But that night I felt like there was no "me" left to me. Our marriage, our life, our days, more often than not, revolve around Jacob. Typically it is the "Jacob Show" at our house, with Jacob dominating the conversations, activities, and moods of the rest of the family.

Sure it would be easy to say, don't let that happen, make it a priority to tend to those other relationships. That's much easier said than done. We try to find time for ourselves and our marriage, and make special points of doing things with just the baby girl. But more often than not, it all comes back to Jacob whether we realize it or not.

The next day I felt better. Sometimes that's all it takes is a good cry and let it all out to give you the strength to move forward.

As I headed out to work at church that night, I was secretly relieved to be leaving the chaos behind if only for the two hours I would be gone. As I drove, I thought of Jacob and again was worried that this was to become our new normal. I prayed over and over, "Please not my baby boy, please not my baby boy..." begging God to bring the smile back to my son.

And then it hit me.

I didn't even bother calling my husband. I dialed the number for the doctor's office leaving a message for them to call me ASAP.

Sure enough, the inhaler they had put Jacob on can occasionally cause aggressive and agitated behavior in children. The doctor said that it is normal for children with Autism/Aspergers to be overly sensitive to medications.

We stopped the inhaler immediately. The next day was better, and by two days out Jacob was back to normal.

Oh, we know that Jacob will still have his moments. That's our reality. But at least we know that there will be a little break in the action. That there will be smiles and laughter in between the meltdowns. That there will always be a little calm before and after the storm. And together, we will always get through it.