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. 🚌

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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 🚌!

Love My Tribe

I always thought since becoming an autism parent, my tribe would consist of other parents who face the same struggles and challenges, ups and downs, successes and failures like I do. I was wrong. I thought in this tribe we’d have this understanding of acceptance, a feeling of camaraderie between us. I thought they would be the people I would go to for all my trials and joys with J and his autism. I was wrong. After 7 years (5 of those being a autism parent), I have found my tribe. First, I have to acknowledge J’s school team as part of our tribe. They have been great from the start, continue to support, embrace and encourage J everyday at school which in turn carries over to home. We are lucky that there is a trusting revolving door between us where information, assistance, questions and answers live. These loving individuals get it, as much as a non-autism parent who is helping raise our son can. Then there are those in our lives that aren’t part of an official autism group, but they are part of our group and thus for J. These friends don’t have an autistic child, a few have experience with autism but not with a it-resides-in-my-home experience BUT that doesn’t disqualify their understanding and ALL these friends may not exactly get what we go though in our autism world, but not knowing hasn’t stopped them from showing their support, reaching out to us, interacting & getting to know J and wanting to spend time with our family for who and what it is. So yeah, I don’t have what I thought I would have as an autism parent concerning a distinct support group related to our reality. But what I do have is a great group of friends that I wouldn’t change for anything. I so look forward to seeing these people, they have become family. We share hobbies and interests, keep in touch, see each other as often as we can, plan dinners, play games, share books & wine, and always have a good time.I hope I’m not jinxing it all. ❤️I always thought it would have to be other autism parents that were my main tribe, and even though that could be someday, right now it’s our friends with kind and gentle souls, who celebrate in big ways being different rather than looking down on it, who celebrate J with us and our life. I’m grateful that in return they have chosen us as friends and we get to celebrate their lives with them too!

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.

Our Autism Is…Age 7

Our autism is…

One-on-one support and supervision at all times, both school and at home, because he needs it not because we are helicopter parents.

But this fact comes with the realization and beginning of J needing, wanting his independence. This has become a norm these past few weeks when J escapes to his bedroom to be alone in the afternoons. It’s definitely a sign of him getting older.

Is technically still nonverbal, though his sign language skills grow with words that allow him to communicate his needs and through his augmented communication device as well. Lots of learning on both his and our parts to come in the years ahead.

Still loves Disney and other animated movies with a passion the puts his mother’s reading obsession to shame.

Dressing, tying shoes, brushing teeth, putting on a coat, buckling and unbuckling from the car still requires all hand-over-hand assistance with additional prompts to stay on task.

Middle of the night wake up calls, usually 3 to 5 times a week. He may play in his room or with luck on our side go back to sleep relatively quickly with a little cajoling.

Loves when others, especially Lance or myself, make goofy or funny noises or enunciation with words. He’ll giggle a giggle that is contagious.

Loves swinging but needs assistance as he hasn’t learned how to kick his feet out for momentum. But this is okay, gives me time spent interacting positively with him.

Having to walk hand-in-hand everywhere. This is a great learning curve for J who doesn’t understand about danger, dangers in a parking lot, dangers alongside the road or the importance of staying with us when shopping. He is still of the mind frame of wanting what he wants when he wants it without consideration for the world that revolves around him.

Not yet potty trained…woe is me. Still have to purchase a box of Goodnight pull-ups each week. If you see coupons, please send to me or wine coupons are the equivalent.

IPad time is still a necessity. He loves having his iPad time for PBS Kids or his movie, preferring it to watching them on the TV. As iPad time is managed, he has become a lot better at giving it up for a break because he now understands he’ll get it back again later. Huge cognitive skill learned.

But not so much with traffic stop lights now. He has started to become upset, at times inconsolable, when we have to wait at a lighted intersection. Therefore we are constantly explaining to him that we have to wait for the lights to turn green because then we can go. It can be a bit overwhelming, but we’re hoping he learns quickly.

As with all aspects of autism, it is a spectrum. As with all aspects of being human, we are changing. Therefore, J like everyone but on a so much more wider plane is evolving at a his own pace with little consideration for what society feels he should. He’s the strongest person I know to be able to do that, to not give a care for what others may think of him.

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.

The constant trials of autism

We’ve had a lot of situations with J over the past several weeks. From him biting himself, to very early morning wake up calls and therefore lack of sleep, to body self discovery, a stuffy/snotty nose and an impacted ear. It’s all accumulated into one big cluster.

He isn’t feeling the best either today. Had a big day yesterday as we celebrated our fundraiser for autism surpassing its goal with a donors brunch and then had friends over for a game night. He coped very well- with all the different voices, noises and changes to his regular Saturday routine. However today he is suffering from all the over stimulation of yesterday; he’s tired, restless and unsettled.

I’m sitting on the floor of J’s bedroom now as per his request he wanted to lay down and he has been put back into pajamas. He recently discovered his private parts and though we were encouraged at the beginning of this revelation for him because we thought it might lead to a breakthrough in potty training, it has quickly become a thorn in our side. He likes to mess around with himself when he is bored or being defiant. So to make it easier for us all today, back to pj’s he went. You have to choose your battles and with all the other things going on with J today, mentally, this is one I didn’t want to wage war with.

I feel bad for my boy when he is feeling this way, out-of-sorts. I’m secretly hoping he’ll want to nap but I won’t push that on him, because it might result in another sleepless night for us both if I do. I could say I want us to both to sleep like babies, I definitely do for J, I on the other hand would like to sleep like my husband. Sleep through the laugher, squeals, giggles coming from J’s room, the thuds against the walls and the loud squeaks from him bouncing in his bed. But that’s for another lifetime. Instead, the essential oils have come out to hopefully spread peace and calm for us all as we take today on.

And to top it all off, we’re stuck inside again as another snow storm hit the Midwest. J loved the nice spring days we had earlier this week, being able to come home and play outside again. I’m ready to try hiking and walking trails with J, good old fashion exercise. He’s just ready to get out of the four walled buildings, whether at home or school, he has had to stay inside all day for too many days from this extended winter season.

This entry has kind of been all over the place but it some regards it illustrates how J is operating today and how his brain is functioning. From one topic to another and then back again. I loved how well J coped yesterday, not all days can be easy for him, he needs to have these days though to learn how to be comfortable and know what he needs to do to regulate himself. Not many people understand that his days can be so much harder than we all realize, that he did so well yesterday, I’m so proud. Now just to tackle all of the other J-isms, one at a time, after today.