This is hard and I want you to know why

 

I have not had time to write anything because I have too much going on and no motivation to express my feelings.

Day in and day out I try to keep the mindset that “This is not a competition” and “Everyone’s struggles are relevant.”

Today I have to say No and tell you why this is hard for me.

 

  1. I have to change my way of thinking completely.

    I have been labeled as having “autistic behaviors” because I have rigid thinking with compulsive, obsessive and repetitive behaviors.  This doesn’t mean I have Autism, I just show some of the similarities. So this makes it very hard for me to change my way of thinking. I’ve been slowly trying to understand positive parenting for the past 4 years. I didn’t grow up in that environment so it has been very hard for me. I have a low frustration tolerance so I have to be mindful of when I’m getting overwhelmed. I am now doing the Positive Parenting Program modules with my counselor so she can help me interpret and utilize the skills. Having to change your thinking pattern to better benefit your children is not easy.

  2. Everyone’s struggles are relevant…but are they really?

    Since I’m allowing myself to have a vent session, I will say that coupled with the rigid thinking it has been hard for me to understand other people’s trivial problems as actual problems. There are women in the therapy rooms, that I call “Desperate Housewives of OT,” who constantly complain about something that seems so out there or trivial to me. Todays topic was their children riding the school bus and how they won’t allow their kids to ride because of the “things they learn on the bus.” It must be so nice to be so privileged that, not only are your kids in charter schools, but they don’t have to ride the bus. I have no problem with the school bus but I also don’t have a choice in Joshua riding it. We only have ONE car.
    But that’s not the only thing I hear…
    I hear about how there’s so many vaccines, there’s too much pesticide on the food, they have to go pick up dinner on the way home, they like their house to be clean all the time, they have a maid service one a month, there seems to be so much Autism right now (oh boy does that one make me happy to hear!), their husband didn’t help put the kid to bed last night, their child had ONE tantrum in the store, and on and on.
    My son had THREE therapies today. My son is 3 and he had THREE therapies today. I’m moving around our therapy schedule soon, but on top of everything else during the day, we also go to therapies. I know a lot of people are like well you can just stop the therapies….Um no. My son has made so much progress in his therapy. So much. During and in between his therapies, I still have cooking, cleaning, scheduling, eating, emails to check, cats to tend to, and all the other things.  Your kid had one tantrum in a store. Okay yes that’s rough, but try a MELTDOWN at BEDTIME a couple times a week. And that’s my 7 year old. Let’s also factor in the fact that I have 7 diagnoses too and I’m managing a household almost by myself. My husband doesn’t come home until 6-8 pm. Once he does he’s not putting kids to bed.
    But I’m sorry that you feel too many things went wrong for you this week.
    Try the past 9 years.
  3. It’s hard seeing other kids grow and develop on track.

    I love my boys so much. So, so, so much. I try really hard not to compare them because I know that’s a fault with me, not them. They aren’t comparing themselves to other kids.
    When I see other kids who are younger, or were previously below developmental standards, start to increase their skills beyond my kids I can’t help but feel so depressed. I mean, look at all therapies we do. The charts. The attention. The books we read. The places we go. It really hurts me. I recently saw a couple kids who, were previously at the same developmental rate as Clark, start to walk.  I couldn’t help but feel even more isolated, frustrated, and upset. I know that Clark is progressing and he asks to hold our hands when we really wants to walk, but independent steps are the next thing. It seems like that is so far away still.
    Since his last GI visit he has only gained 1.5 ounces and I know everyone says that’s fine but I am still paranoid. He’s set for tube removal soon.
    Even with Joshua it’s hard to see that other kids are in booster seats (whether I agree with it or not), are reading, can complete small chores on their own, don’t have a problem with most foods, don’t carry around a blanket in the house, don’t need oral or sensory input etc.
    I’ve been constantly pondering if there is something wrong with me for comparing them to other NT kids, or if it’s just a society thing.
  4. Daily life is just hard.

    I don’t have the best executive functioning skills either. I know, shocking , considering I manage this household.  I have to utilize tactics from my counseling that my 7 year old has to use as well. We both have ADHD. I’m distracted. I’m impulsive. I have to reward myself.  I have to do the same a million times, like clean my living room, because it doesn’t stay that way.
    I have pelvic pain, which is now being treated with hormones and pretty soon pelvic floor therapy. I can get a laparoscopic surgery in a couple months to explore.
    I now take a muscle relaxer for anxiety, teeth grinding, and the pelvic pain.
    I have to use a system of a big dry erase board, a calendar, and notebooks everywhere to get things done.
    My budgeting system is done on a spreadsheet.
    I could go on and on, but the reality is that everyday life is hard in general. I get very little me time, for which I am constantly reprimanded by doctors. I’m supposed to start some type of exercise, like yoga, for pain and anxiety.
    I still detest meal-planning and laundry.

    So this was my pity party for the day.
    Nothing is easy. I really don’t expect that anymore but it would be nice to get a break.

    The best part of my day is seeing the kids wake up in the morning, believe it or not, and spending quality time with Hubby once they go to bed.

 

 

I’m not giving up anytime soon. I just needed to let you know that this is hard.

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