Day 164: May 16th, 2013

Sadly, my mom’s dog passed away last night.  He was such a sweet old dog.  It’s so hard to say good-bye to dogs.  They are like members of your family, and they do the most amazing things for my son.  They are such theraputic beings.  I often think they understand children with autism better than anyone else.  My mom’s dog used to let my son just pet him and pet him.  It was truly amazing to watch those two play, and be together.  I haven’t told him yet, because I just don’t have the heart to right now.  I don’t even know how to address the loss of this very special dog.  Beau is one thing my son talked incessantly about.  He was so looking forward to seeing Beau this summer, and sadly that just will not happen.

            Along with Beau’s death, I’m also extremely exhausted today.  Not only did I not sleep well for reasons I can’t quite fathom, my son decided today was the perfect day to be an insomniac.  He was up at 3:45 AM, and ready for his day.  Unfortunately, due to the sudden onset of illness, he will not be going to school.  It’s sad, but school and bedtime are the only respite I get during the day.  I feel like the world’s worse mother for dreading days when my kids are at home sick.  I have even been told that I am the world’s worst mother for the feelings I have regarding school.  That I should not dread vacation days or sick days, because I should want to spend time with my children, and I do want to spend time with my children, but I feel like I don’t get a break, and this week I did not get a break.    Maybe it’s wrong to be like this, maybe I’m selfish, but I’m a better parent when I have a chance to mentally and physically regroup.

            My children are also difficult children.  My son for the obvious reason, he has autism.  It is exhausting caring for him, because I have to lock up the food, hide the iPad, and be constantly vigilant about him getting into something or breaking something.  Unlike many children, he is not satisfied sitting down and watching cartoons.  I have to be constantly watching him, even when he is sick.  To sleep at night, I give him drugs, and again, I feel judged for this.  Without sleep medication, he would probably fall asleep around 12:00 AM and be up again at 4:00 AM.  Even on medication there, and especially, during TDYs and deployments, my son usually is up once or twice a week at 3:30-4:00 AM.  He is echolalic, meaning he repeats everything over and over and over and over again.  If I don’t acknowledge him, a temper tantrum ensues.  These are not regular childhood tantrums, one time he had a tantrum at Disney World and hit me in the jaw, dislocating it.  I didn’t realize the injury until my jaw locked up a week later.  It was locked for nearly two weeks—I was on a liquid diet for the majority of those two weeks, and it was incredibly painful.  My jaw is still injured to this day, and locks up occasionally, but because it’s considered TMJ, any therapy is not covered by our insurance.  The tantrums usually last between 30-45 minutes, but sometimes we get 60-90 minute tantrums.  The tantrums increase in intensity when my husband is gone.

            My daughter is difficult in a totally different way, and it is a guilt inducing difficulty, because it’s totally our fault as parents.  She is difficult, because she was dealt the short hand when it came to having children.  She is the sibling of a child with special needs.  Her needs, desires, and wants always come second fiddle to her brother.  So when she seeks out attention it is mostly negative attention.  Though lately, it is has not been wholly negative, but slightly irritating.  She likes to hang on me, I don’t like being clung to, touch really bothers me, and having someone, even my daughter cling on me makes my skin crawl.  In addition, she tends to talk excessively.  I will be talking to the doctor, the nurse, on the phone, with Ryan therapist, even with her dad, and she constantly talks over me.  The first time I will tell her nicely to please be quiet, but the talking normally continues to the point where we are screaming at each other.  I have to tell her constantly that I’m talking and to be quiet, but this rarely works.  I have no one else to blame for this issue, other than myself.  She cannot help that she was dealt an attention-starved hand. 

            The Internet, particularly bulletin boards and social media makes matters worse.  I have posted constantly looking for advice, help, even someone who would understand what I’m going through with these two children, and I have found nothing but judgment.  Lately, I left yet another site, because I was called a bad mother, and told I should just give up my children for adoption, all because I did not want to sign my daughter out four hours early during field day.  Then I wonder whose standards I’m not living up to.  The Internet has created a new kind of bully; the bully that can hide behind a screen and say whatever comes spewing out of their mind.  That’s why I wish social media was non-existent, because as much as I would like to share what’s going on at home with the kids with my husband, I would like to get rid of the rest of the static.

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