I sat on the floor next to her bed, begging God to calm her spirit, and mind. We were almost 1.5 hours into our daily bedtime routine. Tears streamed down my face as she continued to repeat herself and I just couldn't understand her. The repetitive words, and actions started again for what seemed like the 100th time. My husband and dog were curled up in the other room trying to get some sleep despite the angry yells of a 2 year old who knows what she wants to say but just can't say it.
I HAD LOST ALL HOPE. There was no hope in the night ending by explaining away the childhood apraxia, autism & sensory issues. My heart ached to reassure her and convince her that she didn’t “need” whatever it is she was trying to ask for. That everything really is okay right now. And then have her drift off to sleep. But there is no rationalizing with childhood apraxia, autism and sensory issues. There is no rationalizing when she is so diligent in trying to convey her words. She would continue until she wore herself out and finally crashed. To watch it completely consume her devastated my heart. I was left feeling totally overwhelmed, alone, defeated and hopeless. In no time the lies flooded my heart and I was felt like the worst Mother in the world. These lies fill my head daily, and I have spent the last week tearfully and prayerfully trying to identify all the lies I am hearing. I am shocked at how often they creep up. I am amazed at how they affect my decision-making, my mood, and my mothering. I found they are all variations of five soul sucking thoughts. 1. My life is SOOOOOOO different from _________ This one is tossed around my head more often than I would like to fully admit. It doesn't matter who it is I'm speaking with but when other moms try to help and speak into my life, I can be prone to thinking, "Your children are fantastic. You have no idea what THIS is like. My life as a mom is SO different from yours. We're night and day." While all of that might be true on a practical level sometimes, I think reality is that it is a lot less different then it is the same. I am amazed everyday when I speak to other moms who can identify with exactly what is happening with me, my family and Addilyn. When I speak to my friends about our children, most of the time we ALL have the same concerns, hopes and expectations of motherhood. So honestly is it really all that different, from you? No. 2. You Know Maybe Her Doctors Just Got It All Wrong.. I am not sure why this one still creeps up so much lately. It's kind of like the five stages of grief, I haven't quite moved passed denial in my head, though out loud I speak as if it is all okay. Despite all the evidence that points towards Addilyn's diagnosis I still think sometimes, somewhere someone got something all wrong. Maybe it's not as bad as they all tell me it is. This always leads me to my next lie... 3. It Is All Of My Fault If you ask anyone who is close to me or has been to a Norwex party of mine you will know I blame myself frequently for Addilyn's cyst forming on her brain. That the chemicals I used while pregnant during work are the cause of her brain forming the way it did. Because truly there isn't another explanation as to why. I fully believe somehow I am the cause of her childhood apraxia, sensory issues and high functioning autism as well. That it's because somewhere along the way I messed up and now she is "damaged" because of it. This makes no sense, I am well aware. I also know of all the research. Logically, this is crazy. Yet, I honestly still think and operate as if my poor mothering choices during pregnancy is what caused all of this. 4. It Will Never Improve, or If I just Work Harder with Her It Will All Disappear... I often put these two together because I find I swing between these two feelings far too frequently. I find myself totally depressed and actually, believing that it is never, ever going to be any better than it is right now. I can look back and see all the progress she's made in just a few short months. I can look ahead to all the therapies, programs and assessments and learning opportunities and know we will make the most of it all. I logically know it will change and maybe improve over time. But then there are days where I absolutely believe her progress just will not happen. And it's horrible to say but its the truth. The evil twin of this lie is actually the exact opposite Maybe If I Just Work Harder with Her, It will All Disappear and She Will be Okay!! If I could just figure out the right schedule for breakfast, lunch, dinner snacks, bed time and playtime. Find the right speech curriculum to follow that best suits our needs. Add more exercise and outside time to our routines, take away all screen time, change her diet, get her in to see that specialist we've heard such great things about. If I could do all those and then some, she could become better, it would all get better... and she would finally be okay... This one I know is the most ridiculous, because my own mind keeps implying that something needs to be "fixed" about my daughter. That she isn't wonderfully made, therefore she needs to be changed. Its actually terrifying how often I believe this one.. YES I realize that working to get them best options for treatment and support is a good thing. But believing somehow that God's plan is not for our good, and it is something I need to change. That's just harmful for everyone. 5. I Am Always Failing Her. And finally, the mother of all the motherhood lies – I am failing my child. I let her watch a movie when we could've been outside together. I am failing my child. I let her stay up way past her bedtime, not because there was something special happening but because I was exhausted and couldn't bring myself to get up off the couch and start the agonizing bedtime routine. I am failing my child. I let her eat cookies for breakfast, because I didn't want to see another meltdown so early in the damn morning. I am failing my child. I forgot to schedule her follow up appointment with her doctor. I am failing my child. I am failing my child. All of these lies create chaos and confusion, and frustration. Both in my heart and in my relationship with my child and my family. And the crazy thing about it, they are just lies, plain old stupid lies. So tonight, I am praying and I am praying hard. I pray I choose to believe what my husband and sweet friends and family see when they see me and my daughter. I am praying I do not dismiss all of these opinions for twisted versions of our incredible life. I pray I continue to see Addilyn for all that she is, and all that she will become, because she will become someone great and I will be right there through it all with her. I pray I do not mistake her lack of words for misery, but see it as an opportunity to grow in a sacred bond with my daughter only few can truly understand. Tonight I pray I have eyes to see us how He sees us, fearfully and wonderfully made. Tonight I pray people accept the messy, sometimes failing, sometimes victorious, stumbling, loud, beautiful, hard working, grateful, completely dependent on grace, loving family we are. I pray that Addilyn always knows and sees that despite the lies inside of my head sometimes, that I am her number one fan, her number one supporter and cheerleader and that no matter where the road may bring us, I believe in her, and I know no matter what we can do this. "look for something positive in each day, even if each day is a little harder than the last" -Becky
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Since Addilyn was diagnosed with Childhood Apraxia a lot of people have been asking us what it is, and how she "got it', and will she ever grow out of it.
First and foremost Apraxia is more than what is outlined below for you. It is tears, and frustration. It is my child fully understanding the world around but not being able to be understood herself. How incredibly frustrating that must feel for her. To know what you want to say but you just can't say it. It is endless therapy sessions, because she will never grow out it, she will learn to live with it. This wasn't just something we one day decided Addilyn should have, I'd never wish this on my worst enemy. Unfortunately Addilyn was born with this, as a result of her traumatic birth and also because of the cyst on her brain. Does it mean Addilyn will be delayed for the rest of her life? We actually don't know and we won't know until she's older. What we do know now, is we're trying to help Addilyn in every single way possible, we are trying to educate EVERY. SINGLE. PERSON. about what Apraxia is, why Addilyn is struggling to even say hello to you and why we NEED your patience more than ever right now. If I haven't lost you yet, continue to read below. Well, what is apraxia? Apraxia is neurological motor planning disorder in which a child knows exactly what they want to say but does not have the ability to say it. It is not due to weak muscles in the mouth but more of a disconnect between the brain and the mouth. It has nothing to do with a lack of intelligence or comprehension. In fact, one of the hallmarks of apraxia is a very low score for expressive speech and a high or very high score for receptive. It is currently believed that apraxia occurs in every 1 or 2 :1000 children. Children can have acquired apraxia (meaning something happened that caused them to have apraxia -stroke, traumatic birth, etc) or idiopathic apraxia (meaning no known cause). I have listed the full details of “why” or the lack thereof below. How I explain it to people – Personally, I always compare apraxia to when an adult has a stroke and loses the ability to speak. They undergo speech therapy to regain that skill, some adults are able to make full recoveries and some are not. Just as the adult knows exactly what they want to say, so does a child with apraxia. Although this is a very loose frame of reference it does seem to provide people with at least a general understanding. One of the things I have found most difficult to deal with is that there is no “guideline”, nothing to say do X & Y and you will have Z as your outcome. Each child is truly unique in their progress but all of them must receive frequent, intense and appropriate therapy in order to be successful. With that being said, progress is not a constant upward trajectory. There will be days when you feel you’ve lost months of progress. If your child is experiencing this, hang tight. I know, for me, it is one of the worst and most defeating feelings, it gets better. Well not better but easier. Who diagnosis apraxia? This is something I am asked frequently and I hear responses that generally catch me off guard. CAS (apraxia) can and should ONLY be diagnosed by a certified speech pathologist (SLP). Not a Pediatrician, not a Developmental Pediatrician, not an Occupational Therapist, not an Ear, Nose and Throat (ENT) Doctor, and not a Neurologist. You should also be aware most school based therapists will NOT diagnose a child with any specific disorders. I have heard that can vary slightly school district to school district but overall you will need to find a private speech therapy office to receive a true diagnosis. A private speech evaluation can also be very helpful during an IEP. Who has apraxia and why? The current knowledge that we have about Childhood Apraxia of Speech (CAS) is this. CAS occurs in the following 3 conditions:
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