As parents of autistic children, or any special needs children for that matter, we are the owners of our very own, very large, set of juggling pins. On any given day they can take the appearance of any of a large number of things. In the aftermath of the days activities I tend to feel a bit like the clown that never made it through clown college, as I lose hold of all of the pins I am supposed to keeping in the air. For me, it is a daily struggle just to make it through the day. I try to remind myself that I am only human, but many times that sentiment gets lost in the list of things that have to be done.
I will use Monday as an example;
Monday my husband comes home from work, he has been gone since Tuesday of last week and will be leaving again on Wednesday evening. So we have two days to get things done. So, I will spend all night awake with my two youngest. Gabriel, because he is autistic and doesn't sleep. Arryn because she is trying to go from soy milk to non-lactose milk and it is wreaking havoc on her system. Depending on how things go in the morning, I will (on average) get to sleep somewhere around four or five and hopefully (if Arryn cooperates) be able to sleep a few hours while my MIL Marilyn is awake with Gabriel and Dominik. When I get out of bed there will be butts to change, and medicine to give (they all have colds) and food to find. There is a possibility of floors to be swept, noses to be wiped, melt-downs to try and soothe and over-all peace to be kept. My five year old is going through this stage where he cannot be left alone for a moment without destroying something. This can range from gouging a wooden chair with a spoon to destroying Gabriel's sensory therapy items. So there is a constant battle with him from the moment he wakes up to the moment he crawls into bed at night. (and sometimes that crawling into bed at night is with me... and he kicks and tosses and turns so I get no sleep at all ;) And the day begins. I have to make phone calls on Monday. I have to set up dentists appointments for Dominik (he has a cavity), for Gabriel (because he grinds his teeth) and check-ups for the other children. Misty has a field trip on Tuesday so there is paperwork to fill out and lunches to buy and pack. Kodee has a 3 day field trip starting Wednesday so there is a list of things we have to buy, lunches to pack and chaperoning for both Adam and I, myself Tuesday and him Wednesday. I have to call and attempt to start setting up respite care for Gabriel and get a hold of our social worker and let her know what I have found out. I am waiting for the updated version of the IEP from early intervention so that I can get it, and pay stubs to SSI. I also have to contact the people at MNsure to make sure that our application for coverage for our family has gone through. There are bills to be paid, meals to be made, naps to be taken, and in the midst of all of this are my children.
If you ask the parent of a special needs child they will tell you that this is where the biggest struggle is. Which one of my children am I dropping today? What am I missing? What do they need that I am unable to see because I am struggling to keep all these pins in the air? These are the things that keep me awake at night, even when my children are taking a well needed sleep break, I am not. This example I gave, is not a chance for me to whine, not an attempt at sympathy, just a realistic look at what our family faces on a daily basis. In the midst of all these technical things that need to be done are our children. Their needs are the most important things in our lives, yet they seem to be the pins that hit the floor first.
Gabriel is a lot to deal with. I would not change anything about him but most of the time he is all encompassing. He has needs that have to be addressed to avoid overload and meltdown and there are days when I feel that is all I do. Then there is Arryn. She's a toddler and struggling with the fact that her daddy isn't home when he's supposed to be, so she's needy and, on top of that, she's tired. Dominik is ADHD and very hard to keep busy. He gets bored and then he gets into trouble. Misty and Kodee so often get overlooked because they are older. It breaks my heart. I don't know what I would do without them. They are wonderful and loving children and they help out as much as they can. However, they are children, and they have their own faults and things they are trying to figure out for themselves. Like who they are and if I am being honest with myself, where they fit into our family at all.
I went to a WIC appointment the other day and the woman stopped mid-sentence and said, "You look like the type of mother who gives everything for her kids. How are you doing?" It took my breath away. I didn't know how to answer her. I really didn't say much of anything other than my kids come first, everything else is just details. It gives me heart to know that someone, who barely knows me, noticed that my kids are my priority. I try. I really do. At the end of the day all I can hope for is for my children to know that I love them. For them to be okay and succeed with the knowledge that I would give anything (and I often give everything) to do them to make them know how loved and truly amazing they are.
So as this night continues on I am sitting around looking at the pins that I have dropped today. I realize that they are only pins. Most of them will be here tomorrow. Those that won't, well, there is nothing I can do about it now. So I am going to do my best to wipe off my makeup... collect the pins I've dropped and know that I am doing my very best. My children are happy. They are loved and if I make it through this without breaking any of them I will have succeeded. Don't hide behind the tears of a clown. Realize, that while we feel like we need to be superheroes... we are human, and as long as we don't drop the pins of our children, occasionally letting everything else go is healthy. Pick up, dust yourself off, and start again, and I will try to remember the same.
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