Sometimes, I might act like I know the ins and outs of all things autism. Sometimes I might seem like I am completely lost. This is the nature of raising a child with special needs. It is like a cocktail of fear, anger, confusion, strength and love. Somedays, some ingredients are stronger than others. I write this blog while I balance precariously on that line between total insecurity and steady confidence. I might appear to have a handle on which therapies are legitimate and which are not; which are progressive and worthy of our children and which are archaic and harmful I might even seem like I have it handled pretty well. You might think I know what I want. This is not the case. I have written before about feeling like a fraud. We make choices and decision using the best information we have at the time. I am quick to make choices about treatment but that doesn't mean I don't experience anxiety about my choices. We have agonized over the choices or lack thereof. I have stayed up nights and played out different scenarios in my head. I dread the thought of regretting one of these big decisions. However, these decisions still must be made. We cannot go back and forth on what might be best for Kate because the clock is ticking. So, we make our choices and we hope they are the right ones. Don't all parents feel this way to some extent? I have lucid moments where things seem clear. During these times I know what I want and I want it delivered. These moments are rare. Mostly, the complexities of this diagnosis are overwhelming. The massive amount of information surrounding autism, treatments, attitudes and philosophies is too much to sort and classify. The misinformation alone keeps me up at night. The readers are so full of compliments for me and I love it but I want you to know I don't have this figured out. I flounder around reading like a maniac. I read medical journals and books and blogs. I read peer-reviewed studies and the heartfelt words of mom's and dad's who 'know.' I ask people questions about their experiences. Sometimes after the kids are in bed I set out to read the entire internet. The bottom line is there is so much I don't know. There is so much I still have to figure out. The experts don't 'know' either, you know. They pretend to know. They answer with confidence but they don't really 'know.' There are more contradictions in the literature than there are agreements and this leaves us further confused. Don't even get me started on the divides within the community. They are most the heartbreaking and confusing of all. I am writing this because I get many emails from mom's and dad's who are afraid. Parent's who ask me questions I have no right to answer. I want to answer. I want to help but I am unqualified to answer. I can tell you my story and my experience but that is all I have for you. My heart aches for these parents who are beginning their journeys. My heart aches for the parents who have been trying to figure this out for years. I feel gutted that I can't take away your worries. There is too much I don't know. There are a few things I do know, however. These are the things I know for sure: I know you cry in your car because it is the only time you are alone. I know you feel guilty for fantasizing about how life might have been different. I know you worry about neglecting your other children. I know you cringe when you hear the "r" word. I know you worry about choosing the wrong therapy/intervention/treatment. I know you feel guilty because you cannot afford treatment. I know you feel angry that treatment is not available. I know you sometimes resent people who don't 'know.' I know you feel awful when you compare your child(ren) to others or to each other. I know you have a hard time thinking about the future. I know you worry all the time. I know you feel guilty all the time. I know you are so proud of your child(ren) I know you celebrate milestones that others could never understand. I know you know your children are perfect. I know you adore your child(ren). I know you would still choose them. I know they would always choose you.
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I really do appreciate the lovely comments you all leave me on this blog. There are days when I have blogger's regret after posting something and without fail someone shares some encouraging words that make it seem ok. Having said that though, I want to be completely honest about how some of the "you're a great mom" stuff can make me feel. It makes me feel a bit like a fraud. Actually, it makes me feel like a liar. I write these posts with every intention of sharing an honest picture of our life but I inevitably have the power to pick and choose what I share with you. I tend not to focus on the parent failures like plugging the kids into their elecronics on a Sunday morning because I had to much wine the night before or forgetting to feed Kate supper because she would never ask for it (yes, I did this). I love my girls more than words and I provide for their needs and I work hard to make sure Kate gets the best services around but that is small part of what I am. I think I am an ok mom Maybe even one of the okayest mom's around. But still just ok. I let me kids watch too much TV and I let my little autistic daughter stim on the IPad for far longer than I should. We rarely eat together as a family, mostly because we must prepare three seperate meals at supper time. I take the kids out to eat way too much. I let them whine to get their way. I buy them things to make myself feel better about my shortcomings. I compare them to other kids. I can be impatient and bossy. I give in to tantrums and sit on the floor and cry during meltdowns. I ask far too much of my five year old when it comes to dealing with her little sister. I constantly hear myself say, "I'm tired." I would like to get through one day without saying that. The list goes on and on. I would be this kind of mom even if Kate didn't have autism. I am not more tired or more stressed because we have more to deal with. We don't have 'more' to deal with. We are dealing with our lot. You all have your own issues. There are lots of days where I wake up and immediately look forward to bed time. I don't exercise enough and my diet has gone to hell. I am generally not a great mom or a role model for mom's of special needs kids. I drink wine and I swear (regular readers won't be shocked by this confession). I enjoy being rebellious and deviant in some ways. I love to challenge the status quo and I have a seriously bad attitude some days. I am full of faults. So, when I read things like, "you're doing an amazing job, " I have to wonder if you knew the real truth of it all would you be saying that? I think I run pretty average in the mom department. Should I blame the impossibly high standards society sets for moms? Should I blame the standards I have set for myself? Not even a little bit. I am flawed. I am learning to deal with it. Anyway, I hope you understand that I am not being ungrateful for the kind words left in the comments section. I just wanted you to know that I am not that mom. That one you keep talking about after you read my posts. I am not even close. In fact, I don't think she exists. |
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April 2022
AuthorGrace and Kate's mom. (Shanell) |