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Stefani's most-fantastical-reads book montage

Crooked Kingdom
Six of Crows
Yellow Brick War
The Wicked Will Rise
Charm & Strange
Their Fractured Light
These Broken Stars
NOS4A2
NOS4A2
Big Little Lies
I'll Be There
Red Queen


Stefani's favorite books »

Thursday, May 16, 2019

Coming to terms with reality...


I am parenting a child with special needs.

I have been parenting her for almost ten years and I am just now coming to terms with what that means for her and for our family. (When I say “I” in this post, I’m not implying that I’m doing it alone – I have the greatest partner I could ask for in this journey. This post is simply my side of the experience.)

Addison is the most loving, kind, smart, funny, creative soul I have ever known. She also faces more challenges than most kids her age. She is impulsive and hyper, scattered and disorganized, and her behavior at home and school is a constant challenge. We knew early on that she was an active child – even in utero she rolled and kicked constantly and once she could roll over, she never stopped moving again. She was diagnosed with ADHD at age 3 ½ before starting her first year of preschool. We went through all of the non-medicated options – elimination diet, essential oils, herbal supplements, sticker charts… We. Tried. EVERYTHING. Eventually, we went through the process of starting her on medication, but we had to wait almost nine months before we made it to the top of the waiting list for an appointment. I don’t even know how to quantify the number of conversations with medical professionals that I have had about Addison. She has been diagnosed with ADHD, anxiety, disruptive mood disorder, potential early onset bipolar, and a few others that I can’t even remember at this point. We went through medication after medication and side effect after side effect. It wasn’t until she was about 8 that we finally found a combination of meds that seemed to work for her for a while. Unfortunately, we have discovered that while a particular medication may work for a while it can suddenly become ineffective and then we start the process all over again. She is currently taking a long-acting ADHD med with a booster at lunchtime. She takes another mood controller with her morning meds. At night she takes a hefty dose of an antidepressant that helps her sleep and an anxiety med as well. We easily spend $300-$400 each month on her medications because insurance doesn’t cover them fully. She sees a psychiatrist and a counselor as often as we can afford – because again, insurance doesn’t cover it beyond 8 visits, which means she can only be seen twice a month and that sets us back another $350 at least. Unfortunately, meds and money are overwhelming yet pale in comparison to trying to figure out how to be the best parent possible for this beautiful girl.

A typical day in our house starts out with Addison getting up for breakfast and getting her pills right away. On a good day, she gets dressed and ready-ish with constant reminders and guidance. On bad days there are screaming matches, doors slamming, things being thrown or knocked over and when we get out the door we are lucky if she is dressed and has her backpack. I can’t count the number of times we have gotten in the car with her hair a total rat’s nest, teeth unbrushed, lunch left on the counter, and the drive to daycare filled with arguments and crying. On a good day at school, she gets work done and plays with her friends. On a bad day, she is rolling on the floor, hitting or kicking other kids, fidgeting with everything she can get her hands on, out of her seat, distracting others. On the really bad days, I get a call from the office or her teacher. She is in 3rd grade and has received 17 referrals this year. 10 were for minor classroom infractions – out of her seat, talking, etc. The other 7 were for more serious offenses - hitting other students or saying grossly inappropriate things. She has served weeks’ worth of “community service” at school – cleaning up the lunchroom, picking up trash, scrubbing scuff marks off the floor in the hallways. After school, on a good day, she comes home, puts her things away and either goes upstairs to play or heads outside. She gets along with her brother and listens to Derek and I. On bad days, it’s very much like our bad mornings – arguing, lying, stealing, destroying things, saying awful things to me. She has stolen more money from us than we can accurately count, has destroyed countless make-up items of mine, gone through our drawers or my purse to find things she wants. She fights with her brother, argues with us, hoards food, and a whole host of other issues that I can’t even list. On a good night, she takes her meds and gets sleepy right on schedule and she sleeps through the night. On a bad night, she is up all night, getting into the pantry (not anymore, because padlock), hunting down any technology that she can get her hands on, cutting holes in clothes, sheets, and cords, or drawing on furniture, carpet, doors. We very rarely have a day that is “good” all the way through.

Even with all that ^, it never really occurred to me exactly how different our parenting experience has been with Addison compared to with friends who have kids of the similar age and even compared to her brother. It seems like the older she gets the larger the gap is between her and her peers. This makes sense because kids with ADHD are typically 30% developmentally delayed compared to peers their age. This means we technically have two 7-year-olds instead of a seven-year-old and an (almost) ten-year-old. We have always known she was immature, and we have always known that she had ADHD. We have tried everything we could think of – incentives, points, rewards, grounding, yelling, ignoring, taking away toys and electronics, etc. etc. and had zero luck in changing her behavior.
I have the greatest support from friends and family, and I am so thankful for that. I cannot imagine how much harder this experience would have been without them. However, regardless of how much time others spend with my daughter, they don’t see the whole spectrum of behavior that we see day to day, minute to minute. They don’t live in the trenches. They get breaks. We don’t. There has only ever been one other person that I have talked to that I felt really “got” it. She was the parent of one of my sweetest students. At conferences, her parents and I got to talking and discovered that she exhibited a lot of the same behaviors as Addison to the same extent and with the same frequency (as in all the time). It was such a relief to talk to someone who was in the same place as I am/was as a parent. I didn’t know until that point how badly I needed to know others who struggle with parenting a child with ADHD. It seems that the older she gets and the more her disability becomes apparent, the more isolated I feel as a mama.

For a long time (the last six years or so), I thought that I could just parent her the way I knew how to parent and that eventually she would just magically grow and meet my expectations. I absolutely knew that ADHD was impacting our lives and Addison’s education, but I never dug into the research about what ADHD is and what the implications really are for her. Recently I had the opportunity to listen to my therapist explain the ins and outs of ADHD to Derek and I and it was a game changer for me. I have finally come to terms with the fact that my child has an intellectual disability. There is an actual, measurable difference between her brain and the “neuro-typical” brains of most of her peers. There are chemicals that aren’t doing their job and there is a delay in the growth and maturity of the prefrontal cortex, the part of the brain that helps us analyze consequences, plan, organize, and do all of the things that are required to be successful in school. I have spent the past few weeks digging into texts and websites and podcasts about ADHD and parenting kids with disabilities. If she had been born with a disability that we could SEE, we wouldn’t even question doing the research and the hard work to learn about it, dig into what it really means, and change our lifestyle to meet her needs. But because she was born beautiful and witty with a great vocabulary and for all intents and purposes, seemed “normal” (Ew. I don’t like that word, because none of us are normal but hopefully you understand what I mean) we kept trying to force her to fit OUR lifestyle and OUR needs. She has almost no executive function ability (planning, organizing, anticipating, changing, etc.) and her anxiety causes her to stress out so much that she can’t focus for the rest of the day because her nerves are on edge. There is no way that she CAN meet those needs unless we teach her how. Slowly. One skill at a time.

Right now, we are working on getting ready in the morning by using a checklist. She can’t shower on her own because she gets out of the shower without rinsing her hair. She doesn’t brush her teeth unless we stand behind her and supervise. Her room is a DISASTER every moment of every day. She doesn’t wipe properly and has to be reminded and supervised to wash her hands after using the bathroom. She would walk around with her hair in tangled knots every day if we didn’t coach her on how to brush it.

I don’t know what I’m doing. I feel inadequate and unprepared for a role that is so much more daunting than I expected as a parent. I’m trying to learn – to educate myself and change some of the ingrained habits and expectations that I didn’t realize I had about what it means to be a mom and what my expectations should really be for my child. The hardest part is that every time I think I have figured something out, something else changes or falls apart and I’m back at square one. This job is harder than anything else I have ever done and is far more important than anything I have ever done. She must be able to go out into the world 9 years from now and thrive – she has to take care of herself and her responsibilities without a constant parental presence. What we do in the next nine years will either help or hurt her as she moves into adulthood. I really, really want to help her. I just need to learn how.

This is the baby girl who made me a mama. She is my miracle after years of being told we wouldn’t be able to have kids. She was the only solace when I lost a baby the year before we had Cohen. I was a mess on the bathroom floor and my two-year-old came and comforted me. She loved on me when I needed it the most. Now I need to love on her when she needs it most. <3 o:p="">

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