I Hate…

Today is just one of those days that’d all parents have. A bad day. Things that always happen are happening but with more vigor. It’s driving me nuts! The boys are fighting. It’s raining and dark. The house is such a mess; I can’t keep up. I’m sick, which makes me tired and, to top it off, I stubbed my toe and cracked my nail. Oh, poor, poor pitiful me! It sounds silly but I find myself saying, “I hate this,” and, “I hate that.” I could easily walk out the door, drive away and just keep driving. I fantasize about a hotel room with a bed and a TV all to myself. Retail therapy. Beautifying therapy. Really anything and everything that would make me forget just for a little bit.

Overall, I am not an unhappy person. I have a good husband, beautiful, smart children and a small but nice home. My life is good. Except when it’s not. I have boys with special needs. Those needs consume every drop of energy and every spare moment of time. Every decision to be made must take those needs into consideration. Let’s say we want to go to dinner. Where we go depends on what they can handle. Will it be crowded? Loud? Are the colors and décor overwhelming or stressful? More importantly, is there any food these picky eaters will even consider eating? Then you have to get ready and that’s a trial in itself. Seriously, most of the time it’s just easier to stay home. Even going to the park is an ordeal. Though my boys are older, I still carry a “diaper bag:” a purse that is also a tote so that I have room for fidgets, sensory items, snacks and so on. I usually carry spare changes of clothing, snacks, water and whatever else the day demands. It’s exhausting.

Today, the weather is stormy. That usually means E has an unfocused brain and getting him to do anything is nearly impossible but, we managed. C went to school but, afterwards, he fell apart. Asking him to help his brother do the one main chore they are asked to do (empty the dishwasher) caused a major meltdown. He started with the excuse that he can’t think straight. Because of this, he thinks he should be able to skip the chore and go straight to video games. I refuse and C meets this with storming off in a huff and crying loudly with anger. When he is more calm, I go in and talk with him. He tells me that he had a “bad day” and is very tried. I can understand that but, “Sorry dude, you still have to do your chores. I’m always tired, I have bad days and I still have to do my chores.” Life is tough. Except that he is six. I don’t want him to have to learn tough life lessons yet.

It’s a constant battle of wills within myself to train him to be a hard worker and earn nice things, against wanting to hold on to that little boy, my baby, a bit longer. I tried talking to him about his day; what made it bad? but he claims he can’t remember anything. He doesn’t want to talk about it. So, I worry. Is full-time school too much for him? Too simulating? Overwhelming for him? What issues is he facing that I don’t know about?

C has calmed down now and has done his chores. He is happily playing with coding on the computer while E sits there, watching and telling him what to do. That drives me nuts too. How will C learn to do anything for himself if E is always telling him how to do it? They seem to be fine with it though, and are finally getting along.

This is just a small example of a typical situation on any given day. I’m used to it and it really doesn’t seem all that bad written down. I know others have it worse, way worse but, I still hate it. I hate the constant worry about my boys and if their needs are being properly met. I hate that I hate leaving my house with them because it’s always an ordeal or that they’re likely to have a problem and/or a meltdown. I hate feeling that most of our friends have abandoned us because we come with “baggage” that they don’t know how to deal with, don’t understand or don’t even want to try. I hate having to defend my kids’ diagnoses. I hate having to justify my emotional imbalance, fatigue and stress because my kids “seem normal”.

I hate having to fight with insurance or doctors or teachers because they don’t agree with me or they “can’t” help. They don’t live with these kids. They don’t see the meltdowns or rages. They don’t see me being hated on or even attacked by the blindness that comes with these rages and meltdowns. They see sweet, obedient kids doing what is expected of them in a controlled setting like a doctor’s office or teacher’s classroom. My kids almost shut down in those places; they live in extremes: It’s either too much one way or too much another. So, to the professionals, they seem to be well-behaved kids with no issues.

I hate that I didn’t get the neurologically-normal kids that I thought I would have, and that they won’t get the lives I dreamed up for them. They are sweet, special kids, but they are not the ones I dreamed of. This life is not the one I planned, and there are days that I can’t take it and I want to run away. I would never do it but, I do think about it and sometimes plan it.

Lastly, and most importantly, I hate having these feelings. I love my family, but no one ever dreams of having kids on the spectrum or having any other illness or disability. I have kids that I cherish and love but, at times, I dream of another life. A life with the same members of my family, but where the kids are “typical” and, while everything is similar, it’s worlds different. What kind of mom would I be? Would I be a fun-loving, outgoing mom who is always keeping my kids busy? Would I work outside the home if both my kids were in full-time school? Would I have hobbies, read more books for fun, bake or garden more? What would it be like to be an average family? One where we don’t have obsessions of the month. Maybe one where the kids resist doing their chores but you know how to handle their outburst because it’s just typical outbursts. One where you don’t second-guess your every choice and decision regarding your kids because you’re doing the same things you were raised with or that others are doing for their kids. Would our kids have lots of friends and sleepovers or would they still be happier with the quiet-at-home, less-is-more mentality?

There is so much to wonder about. Sometimes I grieve for that family, for the hopes and dreams and plans that we had. So yeah, sometimes I do “hate” this life. It’s not the one I planned on but, we are making it work and it will get better.

Why Won’t He Sleep?!?!

The past few days have been “interesting” around here. Evenings have become dreaded again, and the boys seem to be fighting more than normal. I’m not really sure what has changed. I thought maybe it was due to the full moon, but the full moon has come and gone and we’re still having issues. It could be the changing weather and the increased rain and wind that we are experiencing. It could be any number of things. All I know is that I want it to stop!

What am I talking about? Sleep. More specifically, E’s continual waking between 3 and 4 AM conflicting with our (the parents) need for more sleep! I’ve recently been dealing with some pretty heavy fatigue and been needing more sleep than the hubs, so he has been taking the brunt of the issue and now the poor guy is walking around in a sleep-deprived daze.

E has always been a difficult sleeper. As a baby, we were shocked at how little he slept. He never napped like normal newborns. I have vivid memories of dad and I taking turns sleeping on the couch, E in his swing that had a 20-minute timer and music. Every 20 minutes we’d have to turn the swing back on or E would wake up and start to cry. As he got older, if we sat in a rocking chair and rocked him to sleep, the moment he was out, we’d try to lay him down and sneak away. We’d do the commando crawl across the floor and try to sneak out. Sometimes this didn’t work and we’d have to start all over. He never napped well when he was little and, when he did, never for long. Road trips were nightmares. A little older and he was needing to sleep in our room with us. Our bed was not conducive to a thrashing child and two adults so we ended up making a pallet bed on the floor at the foot of our bed for him to sleep in. This lasted for about two years. Finally, he was ready to move back into his room and he only used the pallet bed when he’d wake from bad dreams. The night terrors were intense. He would have lucid dreams where he would scream and yell or talk to us and, yet not be awake. It was really hard to learn to communicate with someone’s subconscious.

We’ve been through nights with multiple bad dreams and waking dreams. We’ve been through the waking soon after being put to bed. We’ve been through early mornings. As he’s grown, we’ve had to go through many different methods of helping him go to sleep and stay that way.

Finally, we succeeded in a routine that worked. He’d be in bed at about 8:00 and sleep until about 7:00. Awesome. Nope, it was too good to last. At first, he started waking up between 6 and 7 in the morning and it seemed to coincide with the Daylight Saving time change. “Oh he’ll adjust,” we thought. We were wrong! He would now regularly wake before 7:00. After a time, he started waking around 5:30 in the morning. Then it was even earlier. For months now, we’ve been dealing with E waking sometime between 4 and 5 in the morning. Thankfully, he’s a really good kid and knows to let his parents sleep. He will read to himself, play with Legos or something in his room. Then he started asking to watch Netflix on our tablet. Ok sure, but not until 6 am. It’s not ideal that he’s up that early, but we’re working on it.

Unfortunately, our tactics are not working. We have the same bedtime routine as always: last snack before bed, brush teeth and so on then story time. Each boy gets one-on-one time with Mom or Dad. Usually this has fallen to Dad so that I have a few minutes to myself at the end of the day. It’s also a special time for them to have with just Dad. Now, however, helping E to sleep is taking longer and I’ve started helping with bedtime for C. Poor E takes melatonin and then Dad reads to him for almost an hour before he’s sleepy enough for him to leave. Then he wants to be checked on in three minutes. It has to be three. Sometimes it takes two or three checks before he’s finally sleeping. That being said, he seemed to be doing okay on the amount of sleep he was getting, averaging 7-8 hours per night.

Now, however, he has been waking up for the past several days between 3 and 4 AM. One time he was up at 2:30 and couldn’t go back to sleep! This is his new normal, and it’s not good. He seems more tired all the time. He often says that he doesn’t feel good, he’s grumpy and has no tolerance for C, which leads to more fighting between them. As parents, we are exhausted, and have no idea what to do for him. We’ve tried things to help him to no avail. He wants to go back to sleep and can’t. It’s so sad.

It’s really hard to be the mom and teacher for me. As the mom, I want to let him play around and “rest” all day but, as the teacher, I can’t allow that. By the time we sit down for school, his mind is shot. He can’t focus very well, and he has a harder time understanding anything new.

We have another appointment with his meds doctor at the end of the month and will be able to discuss if his medications are causing this or not. In the meantime, what am I, the teacher, to do? Do I have to wake “Mom” me up at 3:00 and start school while he’s refreshed so he can zone out when he’s mentally done? As a sleep-lover, I hate mornings. I have a hard time dragging my butt out of bed a simple half-hour earlier for exercise— how on earth am I even considering this option? I must be crazy. I’m not. I’m a desperate teacher and mother who is watching her son struggle. I will do what I must.


Thank You

I have been dealing with a bit of writers block lately. I have things to say, but I struggle with putting words to the thoughts and struggles in my head. Maybe it’s because, for the past week, I’ve been basically in bed, sick. Not deathly ill but, feverish and fatigued enough to only want to lay around (which is so not me!).

I’m a busy person. I don’t feel complete or get a sense of satisfaction from sitting around. Even my “slow” days are busy. I get up and start with the morning rush to help my hubs and get one kiddo off to school with lunch in hand because he will only take one specific thing for lunch every single day! Then I come home to spend the rest of my morning homeschooling my other kiddo. He has classes four days a week at the public school so, I’m running him around to classes or therapy. Then there are the standard doctors’ appointments and errands and household chores and so on. It’s not a big deal but it keeps me busy. I usually like to add something to my day like baking or doing something crafty, or something else that I enjoy so that it’s a fun day too.

So, to spend the past few days in bed was torture. Except it wasn’t. It was also wonderful. My hubs took over fully. He dealt with all things parenting-related, house-related and even brought me food and things I needed so I could stay in bed. It was almost a mini-vacation. Okay, maybe I shouldn’t go that far but, I got a good amount of rest that I desperately needed.

During that time, I watched TV, played games and surfed the Internet. Not all that exciting, except that I found another blog that I got caught up reading and, I really enjoy this mom’s thoughts. One particular post that she wrote in December 2014 struck me as similar to my thoughts, in many ways. She wrote about the struggles parents of quirky kids have regarding needing to lean on therapists. We do need them and, it takes a lot to give yourself over to their expertise. Our kids don’t fit the mold. The internal training-manual we find when we become parents becomes irrelevant if our kids are quirky. We are out of our element, over our heads, and have no clue how to deal with the challenges we face. So, we turn to these people who have been trained to work with our kids. They usually have experience in working with similar situations and we do what they tell us. We try their suggestions. We are at their mercy, so to speak.

I reached out to this blogger and, with her permission, I want to share some of her thoughts with you. In her post, Rebecca Masterson of Sincerely Becca, wrote the following, and it really resonated with me:

I know you went through a lot of training for this job. Some of you have advanced degrees and letters after your names. You speak in acronyms, take data, and analyze my son’s behaviors. You are competent and knowledgeable and educated. You are able to develop lesson plans, implement them in effective ways, and move my son from skill to skill. You are really good at your job.

But I wonder if you know what it’s like to be me. I wonder if you have given any thought to what it is like to parent these children you work with every day.

I’ll tell you that as a parent, it is tough to get your head around the fact that you have a child you can’t help. We special needs parents are forced to rely on others to provide the tools our kids need to reach their potential. “Here. I am handing over my heart and my soul, my absolute everything. I don’t even understand exactly what it is you do, but please make it your best. Please help my child.” It’s debilitating, really. You can help my son and I can’t. I wonder if you understand the importance, the weight of this.

I wonder if you know how much of a toll this takes. Did they happen to mention the tremendous strain we parents are under in all that training? We’re fragile. We’re scared. We’re struggling. We’re hopeful. We’re grateful. We’re really, really tired…

…I wonder if you know that placing this responsibility in someone else’s hands is terrifying. You are tasked with seeing my child’s potential, and reaching through thorns and brambles, through cuts and scratches, and bringing all that potential to the surface. You are tasked with nothing less than changing my son’s life. This might be the most important thing you ever do.

These words are my thoughts and feelings in written form. It is so scary to be at the end of your rope and need someone else to tell you what to do. It’s not natural. There is so much less of “going with your gut” in this kind of parenting. We are fortunate to have amazing therapists that have helped E tremendously in a relatively short time. Tips, trick, medications, parenting issues, you name it, they’ve been there and we will continue to lean on them in the years to come as E grows and changes. So, yes, my dear therapists, counselors and school staff who have contributed along the path that we are on, it is scary for us parents, and we are so tired. You have been such a help and, in our eyes, the work you do with our kids is the most important thing you will ever do. And we thank you for it.

Thank you, Rebecca for allowing me to share your story, thoughts and posts. To read more by Rebecca, visit Simply Becca, and enjoy.

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