This Mother’s Greatest Fear

A few weeks ago on our weekly Sippycup Cocktails podcast I lied. We did an episode of 20 questions, love map exercise, and one of the questions was ‘What is one of my greatest fears or disaster scenarios?’ Lance was right in his answer, I do have a tendency to fear all natural disasters, but ultimately I lied. I wasn’t ready, wanting, willing to dive into what my greatest fear is but here’s the truth.

I am scared to tears and panic attacks of what will become of J when we are gone. I am terrified of him being used, taken advantage of, mistreated, abused, unloved, uncared for, isolated when are aren’t here. Who will watch over him, look out from him, care for him, love him as much as Lance and I do? Who will take the time to understand him when he is going through something that he can’t express, when he has a meltdown? He is so precious to us and my heart hurts for his future when Lance and I are no longer here. How will he be able to understand what has happened, will he be able to, or for the rest of his life will he be asking for us?

I understand that he is only 6 and he has so much more growing and developing to do but this is causing me so much stress right now and I wish I understood why. We are even in the process of establishing a Will and Special Needs Trust but I’ve been a bag full of fears these recent months. We special needs parents have so much more on the line for our child than ‘normal’ parents do. Our goals, needs, and wants are for our child is to be able to take care of themselves in the most basic self-care ways and with the hopes of  so much more.

We went to the pumpkin patch yesterday. When in line to pay for our tickets there was an man with special needs and his caregiver in front of us. Though she was pretty good with him, didn’t rush him to get his money out to pay or push him along so the next person could pay, I would have appreciated if it were my son if she would have answered his questions about what they were doing there and what they were going to see. I did wonder why they weren’t with a group though and it was just the two of them. QuoteMy thoughts drifted to J then and that this may be him some day and I’m okay with that, I just want the absolute best for him when we aren’t around, like I do now. It’s the unknown that kills me, the unknown that is unbearable.

I know this isn’t something I should dwell on. Dwelling on it takes away from the here and now that I want and should be enjoying to the fullest extent possible. There is so much to enjoy with J, even among the most trying of days.

So, I’ve decided I can’t die, nor Lance. It just isn’t feasible.

 

 

 

 

 

Advertisements

Marriage with a side of Autism

In the beginning our marriage was easy, no real concerns other than figuring out our weekend plans and if we were going to eat out or stay in. Then we had J, and having a child changes things up in your marriage a bit. It’s based off who’s going to change the diaper this time or do the middle of the night feeding or deciding what and where you want to go with a little bundle to carry along. In the beginning it’s sharing the hopes of the future, snuggles when they’re tired and giggles of a tickle frenzy between you and your partner with your little one. Then for us, autism entered the picture. The differences were always present and though we wanted answers and help, we still wanted to enjoy our child.

With autism brought the new found struggles in parenting a child with different abilities. It also became about maintaining our marriage when things weren’t going as we had planned and our different personalities interfered with what we thought was best and right for J. From disagreement and tears, yelling matches, not talking to one another and many sleepless nights, we have been through it all. The one thing that has been ever present though it all, is our understanding that we love one another deeply and that we could not go through this journey with J without each other. So we have made a few priorities for our marriage and family.

Communication. Keeping it open and flowing can be difficult at times. It means expressing one’s feelings which can be hard when you are trying not to rock the boat or hurt the other’s feelings. However, having a child with special needs can be crazy. There is so much going on and to discuss at any given time; behaviors, therapies, school, activities. How one of us wants to handle these issues verse the other can cause trouble if we don’t sit down and talk through them, so listening is a key factor as well. It has taken time for us to get where we are today and it will always be something we have to work on.

Family First. We make sure to have dinner together at the table at least a few times a week, it always depends on J. We  have some unspoken rules about screen time, not only for J but for Lance and myself. Making sure we all unplug in the evenings and during times throughout the weekend so we can just be together, usually playing hide-n-seek. We always do kisses at good-byes and hellos with hugs when someone gets home. We make sure to just talk and bullshit about our days, the day in general and the things we saw. We do our best to be present for each other.

Not your typical Date Nights. We aren’t made of money, so we only go out for a real out-on-the-town date night every 4 to 6 months. But earlier this year, we starting having at home date nights. These are usually on Sundays before our crazy week starts and it has really become something we both look forward to. Sharing a dinner with a Game of Thrones episode, a Marvel movie or table top game allows us scheduled time to enjoy each other.

Have Hobbies Together. We don’t do everything the other enjoys but showing interest and participating from time to time carries a lot of weight in our relationship. I think Lance would love if I was into playing video games more but most of them just aren’t my thing. But he has found a few recently that I’ve given a try and really enjoy playing. He also introduced me to an online social community that we are both now very much into. My hobbies aren’t so much of a group activity; reading, writing, crafting at times, but Lance will ask what I’m reading or writing about or working on. He is also my supplier for wood scraps for my crafting projects from his woodworking hobby. Teamwork!

Carve Out Your Own Time. Make sure to allow yourself and each other their own space to do their own thing. It allows you time to decompress without guilt and enjoy your hobbies independently. A little you time is a good thing to get each week.

This all may sound pretty simple, but with the regular chaos of life these can all get a little muddled from time to time. We just keep working on it and reminding each other how much the other is loved. We take moments to still flirt, spoil one another occasionally (or in my case from Lance, all the time), have a quick make out session, leave love notes, make time for romance and fart on each others thighs while sleeping.

Us

 

 

If I could ask, would these be the answers?

Having a non-verbal 6 year old autistic child has it’s challenges, especially when there are so many things as a parent you want to understand and know about your child. Here’s a few questions that come to mind right now that we would love to ask and understand from J. They are followed by our hypothetical answers based on watching J’s actions, non-verbal language and our understanding of him. The intent of this article is to bring forth autism awareness with a little humor thrown in as well.

  • Why do you listen and watch the same 5 seconds of a video clip over and over and over again?
    • Cause I can. Viewing the same visual simulation multiple times helps me gain some control  and to focus in a world that provides so many sensory inputs all the time.
  • Why are you terrified of Dad mowing the lawn?
    • Because that thing is going to eat him alive, how do you not understand this!!!
  • Why do you sleep with your blanket wrapped around your heard?
    • It gives me a nice sensory feel to be cocooned in a space when I’m tired but I basically do it to give you and grandma a heart attack.
  • Why do some things have to be a routine but others do not?
    • I’m more comfortable with some things over others, especially when I’m with you and dad I can go out of routine but like to have it when I’m out of my home environment as it gives me as sense of trust with those I am with.
  • Why do you wait till you go to sleep to take your daily poop?
    • I’m finally relaxed for the day and can. The chaos for an autistic person can be overwhelming through the day and I forget to do this.
  • Why do you stare at the vacuum cleaner when it’s not even on?
    • I’m imagining the monster inside and how loud it can be when it is trying to get out.
  • Why is trying new foods the end of the world?
    • Because I feel like you are trying to kill me, plus I love refusing to eat things I know you want me to.
  • How did you come to the conclusion that Chicago Mix popcorn is its own food group?
    • Because it taste so good, it has to be!
  • Do you know that chocolate milk doesn’t come from brown cows?
    • I thought milk comes from the refrigerator at Costco?
  • Do you have friends at school that you are drawn to?
    • I try to but I’m more drawn to adults as they respond to me more.
  • What do you want to go as for Halloween?
    • Daniel Tiger, Nature Cat and Thomas the Train. (Daniel Tiger has won this year!)
  • Why can’t Dad take his shirt off after he mows and is hot?
    • I haven’t figured out what that stuff is coming from his body and it feels weird.
      • It’s hair Jax, and some day you’ll have it too.
  • Why do you love the pool but hate baths?
    • Good questions, don’t know, maybe because the pool is bigger and not so confining as the bath is.
  • Do you know how much your dad and I love you?
    • Duh!