"I Know Exactly What You're Going Through"

Rosie, one of Thomas the Tank Engine's friends
People are always telling me that they know exactly what I'm going through, and I think, they have no idea. Unless they have a disabled kid or an autistic kid, they have no idea.

Yesterday afternoon was really rough. What got me through is that I had some decompression time beforehand. Also, I now know that my son will not always be so difficult whereas he had been difficult all the time to the point where I was completely burnt out before we started the meds.

Yesterday I totally forgot about my son's neurologist appointment even though it was on my computer desktop. Somehow, I hit snooze and it didn't come back up, and I just totally forgot about it. My son came home from school, and I took off his shoes and jacket and he put his favorite toy, Rosie, one of Thomas the Tank Engine's friends, down in a location unknown to me.

Then I looked at the computer and saw that he had to be at the neurologist in a half hour. Doh!

So, I had to get his shoes and jacket back on, which he was not prepared for since he was in stay home mode. That means, he kept running away from me, slamming his head into the wall, collapsing on the floor, screaming, thrashing around, and doing everything he could to make sure that it was impossible for me to get his arm through even one sleeve. Having lots of experience with this, I was able to wrangle on his jacket. I swear sometimes I should be dressed in chaps and boots for this task. Then the shoes. He kept throwing his shoes and kicking. It took a very long time for me to get his shoes on. During all this, I also have to be aware of what my 19 month old daughter is up to as well so that she doesn't get into trouble while I'm distracted or get hit with a shoe.

Then we couldn't find Rosie. I didn't know where my son had put her. Later we found her on the kitchen counter, but I didn't think to look there. So, I had to try to get him out of the house without Rosie. He was screaming and crying pathetically for "Woe dee" and worked himself up into hysterics. But we had to go, and I tried to calm him the best I could with a quiet voice and tried to get him to take another toy, but to no avail. He was fixated, and I couldn't redirect him.

Then I had to get him down the stairs. Because he was upset, his sister was upset too. They both started flopping and screaming and crying and it was like trying to lead two large strands of spaghetti down three flights of stairs. But, I did it.

Then I had to get them into the car. My son was constantly pulling to run back inside to find Rosie, so I had to hold both of their hands in one hand so that I could use the key to unlock the car door because they both wanted to get away from me. Then I had to keep my daughter trapped between my legs inside the car door while I got my son into his booster seat, making sure that he didn't kick her with his flailing feet as he was still devastated at the absence of Rosie. He kept trying to pull the seat belt off while I was trying to get it on, and my daughter was trying to wiggle away. But I did it.

Then I got my daughter into her seat and we drove to the neurologist's office with the two of them screaming inconsolably. Then we got to the office and I had to get them out of the car and into the building. My daughter had calmed down by this point, but not my son. His tantrums can go on for hours.

I had to carry my five year old son and my daughter to get them inside and to the elevator. My son didn't want to go on the elevator, so I had to try to keep him in a semi-upright position as he tried to fling himself away from me. The elevator finally came, after what seemed like forever, and we went up to the third floor. We got off the elevator, and my son collapsed on the floor kicking and screaming because he's afraid of the height. The building is designed in such a way that there is a central atrium, and the offices are around the perimeter with glass railings so that you can see down into the atrium. He wouldn't move and tried to kick me away every time I got near. I was finally able to get him to walk to the office, screaming and pulling. We got into the office, and he was still upset and asking for Rosie.

Thankfully, we got called in almost right away, and then we had to deal with screaming, kicking, and collapsing because they wanted him to stand on the scale and use a stethoscope on him. In the meantime, he was trying to pull apart the blinds, play with the computer, pull all the wires on the computer, and play with everything on and around the desk. I dealt with this while still having to watch my 19 month old as well.

After the appointment, we had to get out of the office, and he kept hooking his feet on the door frame so I couldn't get him out. I eventually did and had to carry him to the elevator thrashing around again.

So, is this REALLY what folks with normal kids go through? Do you REALLY know what it's like to do that all day long every day? Really?

So, things have been much better since my son is on meds. This used to be my life every day with my son head banging my face and my daughter. Now it's only sometimes, and he never hits me or my daughter. It's still exhausting. I pray for strength and patience every single day.

So if I'm ever late, or I ever look like I just went through a war, now you know why.

Another Great Morning!

This morning my son was awake before I went in to wake him up, but he was laying in bed quietly sucking on his fingers and his sleeve (so cute). I went in to get him ready for school and gave him some tickles (gentle stroking, not to make him laugh) to wake him up a little more and got him dressed without a single act of fighting...no screaming, kicking, trying to run away...nothing. He didn't want to brush his teeth right away, but after I asked him a couple of times, he stood nicely for me so I could brush his teeth wash his face and brush his hair. He complained slightly about putting on his jacket, but I just said, "It's okay," and he put it on without any further trouble. Then he picked which choo choos he wanted to bring on the school bus, and went very nicely downstairs to wait for the bus. He sat on the stairs and sang and played with his trains and I sang one of his favorite songs to him...I love you a bushel and a peck. Then he said, "I love you" and hugged me! It was unbelievable. He was excited when the bus came and I could just keep up with him when he made a run for it. It was great. That's two days in a row now of mornings that never happened before. Maybe one or two things would go smoothly, but not everything...and not two days in a row. His teachers and the bus driver report that he seems happier and he's been singing a lot. I'm so happy. I hope he continues to feel good on the Melatonin.

My Daughter's M's

A drawing with embedded m's done just today by my very talented daughter.

Recently, we were sitting at a restaurant table waiting for our food. My daughter and son had their kiddie menus and crayons and were being very well behaved coloring and drawing. My daughter started saying, "Emmmmm. Emmmmm." I thought it was very cute. Then I looked at her paper and saw little m's all over it. She just loves to draw m's. I've been practicing writing her name with her, and she's learned the M. They're not the most perfect m's, but they are definitely m's, she is consciously making m's while she is saying, "emmmm", and she's just 18 months old, so I think she's really cool, and I am pround of her m's. :)

Melatonin!

I don't know what took me so long to try melatonin for my son. Everyone I've spoken to with an autistic child swears on it for helping to get their kids to sleep.

Usually our evenings are consumed with going into my son's bedroom dozens of times over the course of several hours to see why he's frustrated and banging his head and trying to calm him down...even involving a trip to the emergency room. Usually he doesn't fall asleep until 11 or 12. Tonight he was asleep before 9. No tantrums. No head banging. Last night he fell asleep around 9:30. He woke up without any grogginess. In fact, he was happier this morning than I've seen him in ages. It was even relatively easy to get his jacket on this morning, which is usually a huge fight.

I'm always leery about using over the counter meds, but my son is closely followed by many specialists, so everyone will be looking out for any possible negative side effects. The most common ones are hormonal fluctuations, but his hormones are constantly monitored, so we'll be keeping an eye on that.

All of the scholarly articles I've read about treating children on the autism spectrum who suffer from sleep difficulties with melatonin report nothing but positive outcomes. In fact, beyond just the children falling asleep earlier, sleeping better, and sleeping longer, studies have noted a decrease in obsessive compulsive behaviors and happier parents. :) They report that negative side effects are commonly associated with very high doses and that the doses recommended (under 10 mg) appear benign.

So, after feeling so bad about medicating our son, he's doing pretty well. He can control himself better, he's happier, he's getting more sleep, my daughter is no longer in danger, I'm not covered in bruises, and we can enjoy our son again.

Wonderful Mother's Day!

Well, I had a wonderful Mother's Day! I got the most beautiful cards from my husband and children, and then we all went to spend the day with my Mom. We went to mass and had lunch and then went window blind shopping for my Mom's new apartment.

I got chauffeured back and forth by my husband, and he changed all the poopy diapers, served my dinner, picked up the toys, emptied the dishwasher, got the kids ready for bed, and rubbed my feet. I don't think it gets any better than that!

Thank you Sweetheart for a wonderful day!

Never Enough Patience

I pray continually for more patience, but it doesn't always come. I have a very bad trait in that I get very grumpy and impatient when I'm tired. Very often my son won't fall asleep until after midnight, and sometimes I'm up until 2 because I don't start housework until after he goes to sleep because I have to constantly go into his room because he bangs his head. Or, I get stressed out from all the tantrums, and I can't fall asleep. So, I've been getting about four hours of sleep per night over the last few nights. Tonight I vowed to go to bed early, but I hate to go to sleep before my son in case he needs me.

Also, I'm feeling horribly guilty. He always seems to want a toy I can't find, and until I find it (or my husband does), he will scream and smash his head into the wall. I got angry because I couldn't find the toy he wanted, and told him he just had to go to sleep. It was nearly 10 pm, and I was tired and just needed the day to end. Both kids have basically stopped napping, I haven't been sleeping, and I yelled at my poor son for doing something he can't help, and that of course got him more upset. My wonderful husband found the toy my son wanted, and my son quieted down. I felt horrible.

I went into his room and held him and rocked him and cried feeling like a horrible mother and thinking in my head that I was so sorry he didn't get a better Mommy. I told him how sorry I was that I lost my patience and I tucked him in and rubbed him.

My son being the sweetheart that he is forgave me without a moment's hesitation and just enjoyed being rocked and rubbed.

Why can't I just be more patient? Why is it so hard?

If you've ever watched 19 Kids and Counting, the mother, Michelle Duggar, had a baby at 25 weeks gestation, and has been at the hospital with the baby ever since. She didn't sleep for weeks when things were touch and go, and still with all the stress and lack of sleep, she remained cheerful. She never yells. I don't know how she does it.

Guess What? I Love You!

My son surprised me today. I never know exactly how much information he understands or retains. Today, I observed some evidence that some of what I say is definitely understood. This, I think, should give hope to anyone who is waiting for their child to speak.

I must tell my kids a thousand times a day how much I love them. I have lots of different ways I like to do it. One way is I start out with, "Guess what?" Then I say, "I love you!" Today I said, "Guess what?" And my son answered, "I love you!"

I can't tell you how happy this made me. I even got a kiss. There's nothing like hearing your child say, "I love you"...especially when they've been essentially non-verbal for five years.

For all those people who have told me that I'd be sorry when my kids started talking because they'd never shut up, I am so happy to hear every word, and I hope they never stop.