Wednesday, October 26, 2016

Everything is Mad with You

Back a few weeks ago, I "snapped," at Dominic. Lauren used to call it "barks." I typically reserve my louder, "bark-like," voice for when I think the situation calls for it.  Dominic didn't really do anything, I was stressed because I was running late and he kept repeating the same thing over and over. You could say, I lost my patience. Anyways, he got upset. After I calmed down a little I said, "I'm sorry, do you forgive me?" He said, "no." I was like, "excuse me?"  I repeated my apology again and he said, "no." This went on a few more times and then I let about 30-40 minutes go by before I repeated my apology again. This time, he accepted my apology. When I retold that story to my dad, he said, "does Dominic understand the concept of accepting an apology?" I was like, "yes, he most certainly does!" This past Sunday afternoon, I was resting on the couch in our living room. I have told Dominic he is too heavy to be sitting on me numerous times and half the time he listens to me and the other half of the time he doesn't.  Well, this particular time, he came and stood next to me, jumped up in the air and sat squarely on my stomach. It hurt and I said, "ow!" He immediately jumped off. I told him that he had hurt me and he got flustered and then proceeded to have a half- hour "meltdown." When he had composed himself, I said, "you hurt mommy, please don't do that again." He seemed to understand and the rest of the evening was uneventful.  Monday, Tuesday and today, he told me, "everything is mad with you." I think what he has been trying to tell me is, "everyBODY is mad with you." When he said it today (right as he was getting off the bus after school), I said, "are you still thinking about that??" He said, "yes, mommy." I said, "how did that make mommy feel when you sat on my stomach??" His response, "sad." I told him it did make me sad. Wow, for Dominic to be able to express how he felt (thinking everybody was mad at him) and how it made me feel is DOUBLY HUGE for a child with Autism!  Hopefully, the next time he is able to recognize his own feelings and mine, my stomach won't be involved! He is five feet tall and almost 150 pounds!!

Friday, October 7, 2016

Why I Celebrate Every Seizure Free Day

How many of you have ever seen someone, adult or child, have a grand mal seizure? It is pretty darn horrifying. Yep, that is about the best word I have to describe it. Never in a million years did I ever think Dominic would have Epilepsy. I thought I had a pretty good "handle," on the Autism thing until the grand mal seizure Dominic had in June of 2015. I was hoping and praying that he would just have the one and that would be it.  Little did I know, there would be four more seizures (not grand mal), the most recent at the end of June of 2016. Do I ever fully relax when Dominic is at school, even though they have an emergency plan for him? Nope. Do I let him stay with a babysitter? Nope. I am in constant "high alert," status when he is not with me. It's really, really hard not to be, believe me I've tried. The only thing I knew about Epilepsy prior to Dominic's first seizure was that you have to put the person on their side. I had presence of mind that day in June of 2015 to at least do that. I wish I could go back and thank the 911 operator I talked to. I was so stressed out because a few times I didn't think Dominic was breathing. She told me to count in between his breaths until the ambulance got to our house. The paramedics and the EMT's were so great with him and with the hubby and I. I admire them, I know I couldn't do that job! I had no clue that many times, Epilepsy and Autism go together. Who knew? I wonder into the future, will he be able to get his Driver's License? I have asked Dominic and he says he wants to learn how to drive. Do I tell him no? Is it possible? Will having Epilepsy prevent that? He is on a pretty strong dose of anti-seizure medication. This morning, in the rush to get both Dominic and the hubby out the door, I forgot to give Dominic his anti-seizure medication. Ugh. That is like the second or third time I have done that since this new school year started! Each time, I toy with the idea of just letting him skip it, but my anxiety won't let that happen.  I sent a message to Dominic's teacher as soon as I realized that I hadn't given him the medication, then I drove down to the school and met Dominic and his teacher near the office. Luckily, he doesn't get stressed out when he sees me (he actually gave me a kiss), he just washes the medication down with a cup of water and says, "bye Mommy!" This past Wednesday was 100 days since Dominic's fifth seizure.
 


We go for a check up with his pediatric neurologist in about two weeks. I am so grateful that he is on a medication that stops the seizures. I feel for those parents that are still searching for a solution. I can't tell them I understand, because I can't even imagine the stress they are under.  I sometimes wonder if I have post-traumatic stress disorder. That day in June of 2015 was like a 100 on a scale of 1-10.  The only time that comes close to that level of stress was back in January of 2011, when I had to rush Lauren to the hospital with severe abdominal pain and my mother-in-law passed away in hospice care on the same day. I'm already on two anti-anxiety medications. Those medications keep me balanced and I'm glad that I am on them. I have had more than one person tell me their child "outgrew," their seizures, I'm hoping that Dominic will one day be in that category. Until then, I will continue to celebrate every seizure free day.