Tag Archives: family

Late Nights and Helpless Feelings

There are always the questions, Will he ever…? Fill in the blank. When our babies are born, we have a million big dreams for them. Then, as they grow and their struggles become more and more obvious, those dreams change. No longer do you wonder if he will be a lawyer or a doctor. You wonder if they will be able to hold a job or live independently. You grieve what you dreamed for your child and learn to accept the new reality. Overall, what your child does makes no difference. You just want them to be happy.

You just want them to be happy. That struck me this week. When was the last time he was happy? He is so angry all the time. If you ask him to do something, he responds in anger. If he isn’t being entertained, he responds in anger. Even his preferred activities trigger anger. Today, he actually responded angrily when I responded ‘yes, you may’ to a question he asked. I threw my hands up. It doesn’t matter what I do, it seems like he is never going to be happy.

I have asked myself, is it lack of sleep? He’s a terrible sleeper and I know that I am a stark raving lunatic when I don’t sleep. Is it his blood sugar and all that? I mean, after all, he can’t feel well. We’ve been running in circles trying to manage all of those things, with no answers.

I have caught myself trying to create happiness. I am guilty of buying him things he does NOT need, just to see him smile. This week I bought him a scooter, because the bike is causing far too much anxiety. He slammed the door and flung himself onto his bed yelling that he hates us. I started crying. I honestly thought he would be excited to be able to keep up with his dad and brother when they gone outside. The number of places we can go, ones he used to enjoy, are getting smaller and smaller.

He has the BEST smile, the cutest dimples. I know, I have the pictures to prove it. I looked back, because surely I have some recent pictures of him happy. Even the ones of him smiling (because he knows it will take longer if he doesn’t cooperate), there is no joy behind his eyes. The most recent picture I have showing an actual moment of happiness is from 3 months ago. Everything else you can see he’s going through the motions, but not truly feeling it.

I am so tired of spending our days bracing for the outbursts. Watching Max give in or shy away to avoid confrontation with his brother. I am sick of dealing with medicines that, while I know they are necessary (the alternative is far worse), don’t really do anything. “Support” services… that’s a joke in itself. People who say ALL the meaningless things.

I just want him to be happy. Why can’t he be happy? It doesn’t seem like that should be such a hard thing to ask for. Does it? It’s really hard for Mama to be happy when her boy isn’t. Sigh, off to bed… with the never ending hope that tomorrow will be better.

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A Dad’s Point of View

Guest Post by DadBean

I am the father of two boys with special needs. When I say this, I feel I must clarify because I immediately receive a look of pity as co-workers imagine the ‘worst case’ scenarios we have come to associate with those two words. I follow that up with ‘they have ASD but are on the high end of the spectrum’. Those that don’t know what I mean simply nod and move on. Those that understand acknowledge and typically seek further information outside of whatever context we were meeting under. To be fair, this is not how I identify myself off the bat. It is an add-on to explain why, at some point, I may have to drop what I am doing to restrain a nine year-old who is trying to put a hole in his wall because his shoes were not in the exact spot, he believed them to be. Spoiler: He left them in the car after throwing a fit the day before.


Before we focus on the present, I think it best to rewind and start where every story should start – at the beginning. Don’t fret, I am not going to ramble on about my childhood. It was normal and very fulfilling. If there is any underlying trauma, it is still very deep. I will start this story with the lead up to and diagnoses of our eldest child, who is now 11. I had always wanted children growing up, so when we finally got the news, I was ecstatic. Max would be awesome and, when he grew up, we would do things. The actual things were a bit hazy, but like all parents, I want my children to do something amazing. Even before ASD, I knew I wasn’t going to shove them into something they didn’t want to do. My parents were, and still are, supportive of what I do, and I promised I was going to do the same with mine. I had seen the movies and TV shows that portrayed overzealous parents and where that goes. While I understood they were scripted events, I also knew there is a kernel of truth to be had in those stories. If you push too hard and force someone to do something they don’t want to do, it’s not going to end well.


I am thankful for my wife. She has her Master’s in Elementary Education, so once you add on the extra layer of being a new mother it was only a matter of time before she realized something was off. Me, having zero experience with children or what milestones should be when, acknowledged that ‘yeah, Max can’t talk, but every baby is different’. She continued to worry as more and more milestones were missed. This is where I must acknowledge something, I am a very laid-back person. Yes, there things I worry about, but they slide off easily. My wife on the other hand, is perpetually worried. Every noise, every sound, every smell is a natural disaster waiting to happen.


Eventually, it was decided to begin the evaluation process which involved a lot of paperwork and personality tests. Does Max do ‘X’ never, rarely, often, sometimes, or always. Some were easy to answer, some required further discussion and flip flopping between answers. Did he do that often or sometimes? What is the actual difference between the two? Would the doctors not give a diagnosis if sometimes was marked instead of often? It was too much, especially when you are trying to peel back the layers of personality for a five-year-old.


When we finally got the official diagnosis that Max is on the spectrum, my wife went into full research mode. Trying to figure out how to best handle the future that was to come and while, on an intellectual level, I knew it would mean stuff would be different, it didn’t phase me. He is still my kid. I take solace in the fact that it is indeed a spectrum and he, and later my other son, would fall on the farther end where simple ant hills would now equate to Mount Everest, but there is a whole other range that could make life so much harder on everyone.The big surprise came when Jackson came along. He hit and missed different milestones than his brother, but my wife didn’t seem to have the same worries that she did with Max. Yes, he was ‘normal’ but with the anger of the Hulk to back it up. It could come out of nowhere and for seemingly no reason. We had dealt with (and still do) angry outbursts with Max, but the Jackson’s outbursts were scary. This time it was me who would hone in on a behavior and be like isn’t this a thing? Maybe we should get him tested? We eventually did and shocker, he also fell on the spectrum.


The funny thing about taking those tests was how many of the questions I identified with. Now, I’m not claiming to have autism, but I also didn’t grow up during a period where it was widely diagnosed. I don’t like looking people in the eyes, and I constantly need something to fidget with or I get restless. I love having a plan for the day and woe to the person that throws that plan off, no matter how slight of deviation it is. I watch Jackson spin around sometimes and laugh because there is nothing more freeing than closing my eyes and spinning my head around. The water containers must be lined up a specific way otherwise the day is completely shot and I might as well go back to bed. Do I fall on the spectrum Maybe. According to most of the articles, websites and people who talk about the subject, they say it is partly genetic.


So, this is where I stand. I have two children, diagnosed with the same neurodivergent label and yet they are completely different in attitudes, desires and level of care required. On one hand, you have the worried mother who handles the day-to-day operations of the household. On the other, a laidback father that tries to maintain order whenever possible. Oh, and I almost forgot to mention the puppy we introduced to the family at the end of 2022, months before we moved into a new house. Let the good times roll.

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Sometimes, You NEED to Run Away

I have struggled to write here for awhile. I haven’t been in a very good headspace. It’s been rough. I know many who write as a form of therapy. I do write for therapy, but not the kind of writing you’d find on this blog. Those who know me know I am pretty much an open book when it comes to the joys and difficulties in our world. However, there is a lot that is just too difficult to share. It’s hard to be that raw and I have a hard time discerning what is even appropriate to share. What are things that I wouldn’t want my parents to share about what I did as a child?

Recently, I was given the gift of time away. Thanks to The More Than Project, my amazing family and wonderful new friends, I was able to join 100 other women lakeside in beautiful Wisconsin to connect, laugh, cry and breathe for the first time in a long time. Okay, I cry all the time, but this was different…

First of all, the weather in Wisconsin in September kicks Arizona’s butt! No contest, it was BEAUTIFUL. I haven’t done anything on my own in over 13 years. 5 days of not having to care for anyone but myself was AMAZING! I was able to hug friends that I’ve only met online in person. There was no screaming, no aggression, no trying to meet everyone else’s needs. After the first 24 hours of panic attacks subsided… gonna need to see a doctor about that… my nerves were able to unwind for the first time in a REALLY long time.

A funny thing happens when you step back, share your story and listen to others share theirs. You gain perspective. 

What I learned while during my time away…

1. You can’t always see the improvement when you are in it. 

But when you step out of that chaos, you find yourself in conversations and you start to realize Wait, last week he did xyz or he said such and such. I didn’t recognize it at the time, but that’s huge! I had so many lightbulb conversations that made me realize we are making progress and I DO have reasons to hang on to hope. They aren’t big steps, but I learned a long time ago, our steps are going to be small, in our own time and place. We can’t and we can’t and we can’t, until we do.

Autism is HARD, aggression is HARD, Anxiety, ADHD and all the other letters in the alphabet soup that we call our life are HARD. I joke that I have PTSD and I’m starting to think it’s not a joke. When you are always on guard and prepped for fight or flight, it’s difficult to see the improvements. When things are exploding on a daily basis, it’s difficult to imagine that it can be any different. I see pictures of how things used to be and I get really sad and hopeless.

2. My family actually survived without me. 

I say this jokingly, except not really. Jack and my husband struggle. Like A LOT. When Jack gets angry, he goes after his dad 90% of the time. I am his calm (if you can call it that)… and, to be honest, it sucks. Because, for the past year, I haven’t felt its been safe to be away from him…ever. It isn’t healthy. We recently made a med change. Which we knew was either going to be really good or REALLY bad. But, you get to the point when you have to walk away and care for yourself and whatever happens, happens. 

Thankfully, everyone did great. It sounds like things were very calm, most of the time. There were no cops called, no one ran away (that I know of), the house wasn’t set on fire and everyone was alive when I returned. I call that a WIN! I joke that I will be leaving more often, now. 

This week, I have seen Jack think of others before himself more than once (HUGE!), use his words to tell us he’s frustrated and overwhelmed, and he gave dad an unsolicited hug… probably for the first time ever. Today, he willingly went on an errand with dad alone. If for no other reason than seeing such an improvement in their relationship, my trip was worth it. 

3. I have the most amazing husband in the world.

Okay, he told me to write that…kind of. But, he does have this really annoying habit of telling me what I was already planning on saying. Not only did he pretty much have to light a fire under my behind to make me actually go, but I was able to see how much he really does care for his family. Now, don’t get me wrong, I never doubted that. But we all know when a group of women get together there is a certain amount of griping and complaining that tends to happen in regards to how dense and senseless husbands can be. 

Something interesting happened. Someone would comment on how she wished her husband would do more of something and I’d think, ‘Well, I can’t complain about that because mine does that.’ This happened often and I realized how, even though I feel like I take on the brunt of the boys care, he supports me more than he’s given credit for. I have someone who is truly in this with me and I am very grateful for that. 

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