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.