A mother's desire to complete the Aspergers puzzle and connect with her beautiful son
Monday, April 1, 2013
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.
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