Behaviors, Expectations & Pineapple???

It’s the most wonderful time of the year…Maybe not so much when you’re an autism parent and even more so when you’re an individual on the spectrum.

I’ve noticed the hardships with J a little earlier than normal this year. It started prior to Halloween; aggressive behavior, standoffishness (my new word), needing his iPad like a crutch for self regulation & in social situations, and aloofness. It’s not to say we haven’t had any good or joyous moments, but the others have become more prevalent lately.

Though it’s hard, the best thing we can do is give him his space when able, let him work through his behaviors & emotions without hovering, monitor/control his iPad usage, and just let him be (which includes J voluntarily going to his room for quiet time to look at his books and stem – flap, bounce, and visualize as needed).

Our not so little boy is growing up and some of this behaviors are to be expected as he comes into his own. However, it’s hard when he can’t verbalize any of these emotions to us; to me as I’m the one he seems to be most upset with all the time. I do take it as best as I can and most of the time I’m able to cover the hole in my heart from his behavior directed primarily at me. Yet there can be difficult times and days where I find it hard to smile through the pain and have to focus only on intentional discipline (because a time out when Lance isn’t around is a no go as there’s no way I can get J to his room alone) with a side of distraction and a heavy dose of positive reinforcement.

I’m nervous how things may go in the weeks to come. Will these behaviors stay steady or get worse? Will his attitude jump off a cliff or will regression happen as all the activities, emotions and changes that come with the holiday seasons get into full swing?

Our consistent reminder is to keep J’s schedule (that we can control) as normal as possible which includes meals, iPad time and sleep. We’ve noticed over the past year how much this helps. We also have to remember, though this may be hard on family & friends and hard for Lance & I, that we can’t always participate like everyone else. Mainly, we can’t stay as long as you would like us to (or as long we we want to) because we need to do what is right & best for J and our little family, which is realizing when it’s time to leave. I can understand how expectations are neglected by these actions, trust me I get it, but it’s all for the best for our family’s well-being.

Being a parent of an autistic child, my own expectations have had to be thrown out many times. Though I still have small ones, they are not so big in scope anymore as J’s behaviors and attitude very much depend on how things will go. I know some will say “that’s how it is for all parents”, but it’s just not when you have an autistic child. It’s very much like comparing kiwi to pineapples. Kiwi is soft, fuzzy and sweet whereas pineapple is hard (to get past the surface), pokey (have to be careful when handling), and can have a bite to it before turning sweet. I’ve just realized through this analogy that J is very much like a pineapple.

So as the weeks progress and the holidays (with all their expectations) come nearer, I will take it one day at a time. I will remember that a bad moment doesn’t make it a bad day and a bad day doesn’t make it a bad life. I’ll remember it’s okay to give J his own space and have my own as well. I’ll remember to store those precious moments of laughter, giggles, smiles, cuddles, hand holding and hugs away for those times that can become too much and that those good times are just being hidden away but will come again.

Now wish me luck as I go try to hug my pineapple.

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Back to School Sorrows – Part 2

I was so good about not getting emotional before J left for school, didn’t want to upset him prior to leaving, but once he was on his way the tears came.

I’m always so nervous for my boy. Will his new bus aides treat him okay and try to understand his quirks? That includes his new paras at school, will they work well with him and vice versa? Will he continue to excel and progress with his IEP (individual education program)? Will his classmates and peers be kind to him and nice, will someone try to be his friend?

I can’t begin to tell you how many times I’ve asked the universe to let him be able to tell me how his days are. The ups and downs, what brings him joy and sadness. I so wish I could know what his days are like besides a third party telling me this and that.

Things will be alright though. Everyday I learn more, learn how to understand and relate to my son, learn through research and articles on how to be a better and stronger advocate for my son, learn how to seek support and guidance from others to keep progressing with my son. I can only hope that with all this knowledge and continued learning that J will never go without (no matter how many times I think I’ve failed him), that my intentions are always for the best, for his best.

This doesn’t mean there won’t be challenges, hardships or sorrow. Challenges with transitions and new or different schedules. Hardships with maintaining appropriate behaviors. Sorrows that we don’t get to experience the typical events that go along with raising a child; like in our most recent event, the joys of back to school shopping. What a chore the turned out to be. J had a meltdown while shopping because he wanted to go to the garden center instead of doing the shopping first. He didn’t want to wait or want to understand the first/then schedule. A trip that could have been fun and enjoyable turned into Lance walking, half carrying J to the car while I finished the shopping. The excitement for back to school shopping, open house night or showing off his classroom, where he sits, his teacher or friends isn’t something we have ever experienced.

At the very least I won’t ever go without seeing his excitement of seeing the gym during ESY or getting on the magical yellow school bus in the mornings. ūüöĆ

Back To School Joys – Part 1

J started 2nd grade this week!!!

I was pretty nervous for him to go back to school, given his aggressive behaviors he’s had in the last few weeks and the feeling that he may have regressed over the summer as well, my fault.

This summer I took a different approach with J, especially since it all started a little rough with lots of aggression and turmoil aka I was J’s punching bag. So I backed off, I relaxed and hung out with J instead of having an educational and therapy driven agenda with him. I engaged when he wanted to, requested to or when I could get away with it. We had a great summer, including a wonderful family road trip. I was a completely different mom this summer, a mom I was happy being and I was happy to let Jax be a regular kid, enjoying his summer vacation.

Then reality hit and I realized there was only 2 weeks till school started back up and I started to freak a little bit. Were his writing skills, cognitive skills, listening skills still up to par with last school year? It wasn’t like we hadn’t worked on anything this summer or not gone to therapy sessions or hadn’t gone on social outings or hadn’t taught positive behavior, but I wondered if my new approach to making this summer more sustainable may have backfired for the overall global needs of J. I mean I have a 7 year old non-verbal, not yet potty trained, sometimes aggressive, but with the cutest freckles and giggles, autistic child going into 2nd grade!!!

But all these worries were for not. J has had a GREAT start back. He participated in ESY (extended school year) sessions which help for him to transition back into school with a couple hours prior to a full day back. Since his first day back, J has met and exceeded our expectations and that of his school support staff too. I couldn’t be prouder or more excited about his school year ahead. As his resource teacher said, ‘this will be our best school year yet’. I certainly hope so, fingers crossed, toes crossed, arms and legs too; all for an extra measure of luck.

I think what had made this school year even greater for J is he gets to ride the actual school bus. He loves it! Had never been so excited to leave for school and it’s all because of a big yellow bus ūüöĆ!

For what it’s worth…

I get that this life is hard, stressful and intense. It can be sad and lonely, heart-breaking and worrisome. It’s a journey of questions and what-ifs. It’s full of paperwork, insurance, therapies, planning and meetings. Along with mistakes, trials & errors, and tears.

There’s hitting, biting, kicking, dropping, scratching, pulling and the exhaustion of a mom and dad. It’s full of ‘use your words’, trying new foods, understanding our non-verbal son, the forever struggle to potty train and working on skills at all times.

There is no rest for the weary.

The majority above comes with being a parent but add being a special needs parent and all of the above has an added boost to it.¬†It would be so easy to always dwell on the hard times, the negative aspects, trying issues and the difficult situations we go though but that shouldn’t be the life we live. It shouldn’t be the life we choose.

I do acknowledge that this journey has smiles, giggles, hugs and snuggles. It has wonder and amazement at each new day. It has the cutest nose, kissable cheeks and long black eye-lashes. It enjoys tents and books and of course iPad time. It of course being J.

So though at times I may focus on the negative or worry more than I should, I have for the most part looked to the positive and good of what I can learn from J and autism. J has taught me patience beyond anything I had before, to be present and to use my own words. I have learned to slow down (but that might be more so because J likes the lights off in the morning and night) and to engage with not only him but those around me.

I connect with my son on a level I didn’t know about before autism. J letting me enter his world is a privilege, and to see the simplicity of life through his eyes is awakening. I love watching him, how I can see his mind flit from one thing to another. I may have laundry to do, dishes to wash or a floor to sweep but if J wants to engage with me, I will drop whatever I’m doing to be with him because you don’t know when another opportunity will present itself.

I love my child and his autism for what he and it has given us, shown us and taught us. Every day I look at my child and can feel my heart melt because of how much I love him. We will have difficult days in the future but I will continue to focus on the positive and what can be instead of what isn’t.

“Looking into my son’s eyes, all I see is a happy boy who does not think (know) he has special needs. And that’s how it should be.” ~ SpeakingAutism.ca

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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.

 

 

 

 

 

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.

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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!