I need to start doing push-ups!

We went out with J yesterday, just a quick trip to Target and then grocery shopping at Hy-Vee. J did an excellent job listening and behaving at both places. I was very proud of him.

Taking J out by myself isn’t something I’m very comfortable with doing anymore. Besides to his therapy sessions and a trip to the local public library, we are homebodies. I can’t even recall the last time J and I went on a shopping trip or fun outing just the two of us.

There’s several reasons for this. One, I’ve unfortunately become J’s punching bag so two, when meltdowns occur I have to have all my wits about me to read his emotions and hopefully block any aggression that comes my way which leads to three, this isn’t something I want to go through with all eyes upon the chaos of J in a public setting.

Yes I know, I shouldn’t care what other people think of me and J but I do. Along with the additional fact that if and when J were to have a meltdown, I can’t control or contain him myself. It would take every ounce of my being to handle him. Been there, done that, can’t do it again.

It’s exhausting. Not only physically but mentally. I’ve come to realize I’m hyper vigilant with J. I’m always at the ready, watching J and everyone else too. I’m always preparing myself for a possible meltdown, when and where will it happen? I’m always reading J for clues of how he is taking it all in, internally and externally, sensory wise. I’m watching others who watch J, it can be both disconcerting and amusing at times. I’m always making sure J is within an arm’s grasp if he isn’t already holding someone’s hand or that I have good running shoes on should he run off. I also have a different purse I have to wear when I go out with J so I can have both hands available at all times.

It’s no wonder I’m usually ready for a nap after we get home from an excursion with J. My shoulders usually hold the tension for awhile afterwards, and I wonder if this will ever end but worry if I let my guard completely down the unmentionable will happen. Maybe over time as he gets older, can understand when we tell him to stay close and does so without issue, or I become more trusting of others to let him out of my site, will this everlasting state of being ready fade a little. Till then he is only 7 and has much more to learn, myself included.

I’m grateful that they are days for therapy followed by a trip to the library for good behavior, they are our safe zones. I’m grateful for my mom that spends a day with us each week so we can get out and about, as I’ll have her help if J has any issues. Plus hanging out with her just because is always a plus. And I’m most grateful for my husband for taking the brunt of the work when we go out with J. Handling J can be a lot of work or at least it is for me. Lance has a more calming element about him than I do when J is a having issues, I think J can read into my anxiety. Lance also has more and bigger muscles than I do, maybe something I should work on.

Better get some push-ups in before it’s wine time.

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I’m fine. He’s good. It’s just another autism story.

I’m fine.

That’s usually my answer to anyone who ventures to ask how I’m doing.

He’s good.

Is how I’ll answer when asked how Jax is doing or how school is going for him.

There’s reasons behind these vague answers.

Who really wants to hear about the trials and tribulations of an autism parent. How hard it is. How lonely and sad it can be, depressing. How the bad days are many compared to the good ones spotted here and there. How as a parent I feel like I’m failing my son day after day, even though day after day I tell myself it will get better and day after day I try to parent better, have more patience, engage more but let him have his space.

Who wants to really hear the milestones and improvements J is accomplishing? How can they relate to the fact that my 7 year old; is starting to use two syllables when communicating whether coherent or not, is getting better at writing his name with hand-over-hand assistance or imitating straight lines vs squiggly lines, is learning 11-20 number recognition or about the weather or understanding opposites?

Who really wants to know that J wakes up at 3am consistently because that is his internal alarm clock therefore I’m awake too, that he is not yet potty trained and I don’t know if he’ll ever be, he still loves oral sensory input, that his favorite game is hide-and-find while his favorite activity is car rides, that he isn’t writing stories or making art to take home for Mom & Dad to see and no one what’s to hear that when he gets over excited/simulated he bites himself or us?

Who wants to hear about how I struggle daily to engage with my son or how difficult it is for him to allow me to enter his world? How when I’m allowed, it’s pure joy but to get to this point is a lot of work, (work worth doing) and that I wish more people would try to do with J.

No one wants to know that Lance & I have to continually tell each other that we got this, that it will get better or that we apologize to the other when J lashes out on them. No one wants to know that bruises, scratches, scars, tears, are part of my everyday life now. That I’m already upset knowing that one day we’ll probably have to put J on meds for his aggression. That I hide this part from everyone including myself or it becomes to much to bear. That if you asked me now, I still couldn’t express all of this verbally.

I’m fine. He’s doing good.

Our life is so removed from everyone else I know. To explain it in full context would be like explaining biophysics to a 3 month old, it’s just not possible.

I love my son beyond words and I wish I could express all aspects of him, how both challenging and special he is, how he both frightens and amazes me. I just haven’t found my physical voice to do so yet and even here on my blog I’m reluctant. Because who really wants to know, who really wants to take an interest? It’s been heard, read and moved on from. It’s just another autism story.

Autism Awareness Needs to Equal Acceptance.

Tomorrow, April 2nd, is World Autism Awareness Day. This has been a great campaign for many years by exposing the world to autism and one that I love supporting. I’ve Lighted-It-Up-Blue every year since J’s diagnosis by advocating for this day, wearing blue myself, encouraging others to do so and even changing our outside house lights to blue.

However, in the past year I’ve come to support the concept that this day not only needs to be about awareness but also about acceptance. Our world still needs to be aware of individuals with autism, as recent studies indicate that 1 in 41 individuals are diagnosed, but more importantly these individuals need to be accepted. Accepted for their differences and challenges, for their own uniqueness, and accepted for who they are not just their autism.

Individuals with autism need support, patience, love, respect, and understanding. Autism isn’t something to be cured or fixed but rather acknowledged and not judged. This may mean that most people will have to go outside their comfort zone to engage with a person that has autism, but this minor discomfort for you is nothing compared to the discomfort an individual feels when they have to go outside their comfort to be apart of ‘normal’ society. (Normal is all relative though, there is no such thing as normal in my book. Normal is what you make it.)

For our J, I want him to be accepted by being recognized by others when he is in their presence. I want others to make sure they say hi and goodbye, knowing that he isn’t going to seek them out to do so. I want others to acknowledge him and ask how he is doing, knowing that his Dad and I will try to help him answer back but will most likely be the one answering for him. I would like others to engage with him whether he is watching a movie, looking at a book or bouncing on his exercise ball but knowing that he probably won’t answer back too much and I want them to keep trying. I want others to know that when they engage with J, it means the world to him and it means the world to me. It will take time, probably a long time for him to reciprocate back to you but when he does it will mean the world to you too.

I want all individuals with autism to be accepted not just because of my J but because they deserve to be. These individuals shouldn’t be defined by their autism, it just is who they are, it’s just a piece of them. They are just as friendly, brilliant and extraordinary as you or me.

Personal Growth

A few weeks ago we were hanging out with good friends and their kiddos, enjoying pizza and a few drinks while J enjoyed a movie on his iPad and their two, 6 and 3, ran around the house playing. I think to times before when I have been in the same situation and instead of enjoying the moment I dwelled on J being different from the other children that were around. And for the first time, this evening, I wasn’t worried or concerned about it at all. I was enjoying life, our family and friends for what is rather than what isn’t. Oh, how I’ve grown.

Right now as I sit with J in our very quite home there’s no yelling, no noises, no echos off the walls or throughout the rooms. It is J’s play time, self directed. His newest thing is to sit on the living room couch by himself either to decompress or be a kid hanging off it outside down because that’s fun too. He’ll also sometimes bounce or lay their and flap as he plays movies in his mind. I’ll say an occasional ‘no bite’ as J still likes sensory input by mouth contact and maybe a ‘help-a’ will come from J when he gets struck from hanging off the couch and can’t get righted. Then off to the stairs he’ll go, his other new enjoyment, though not mine, as he likes to lean over the top stair. No wonder I have anxiety issues.

This is our normal.

Being around our friends’ kiddos was so fun. I appreciated their noises, words, and their play and interaction not only between each other but also with us adults. I loved figuring out what they were saying or trying to tell me. I enjoyed them interacting with me, being crazy kids and running amok.

It was a revelation when I realized I wasn’t thinking about or getting sad about not having a this in our home or J not playing with them. I’ve (hopefully) come to the understanding consciously to appreciate what I do have with J instead of contemplating what I don’t. I appreciate what I have, not the lack thereof. Though it is different, it is not less.

Luckily for me, my husband is a big kid so I do get periodically loud noises when J and him are rough housing and playing, as boys tend to do. The noises mostly come Lance though.