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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"Normal" toddler speech development varies. This I understand. But that doesn't stop me from feeling like the worst mom, ever. I understand some can master speech, while other's fumble through even the basics. I get it, this is NORMAL. But it doesn't stop these feelings. So please stop telling me, it will be okay. It doesn't feel okay right now.
Everday I struggle Addilyn not talking. It makes me feel horrible, incapable and that maybe this mom thing just wasn't for me. I know it is normal and these things happen but it doesn't make it any less of an issue right now. Every. Single. Day. I feel like banging my head against a wall and screaming " WHY CAN'T YOU JUST TALK TO ME!?" I hate having to guess what you're trying SO hard to say to me. The reality of all of this is I'm struggling more with speech delay than it seems you are. We go through the daily motions, of the grunting, gesturing, pointing, guessing of you trying to explain why, what, who, where and when. And I'm dumbfounded because as hard as I try, I can't undersatnd. I just, I can't figure it out. Soon, the tantrums start, the crying, the screaming, the hitting of your head, the biting. And I'll be the first to admit I'm dying inside as you become so frustrated because I'm that frustrated too baby girl, I'm that frustrated too. I think what bothers me the most is everyone else acts like its no big deal. She will catch up they say, as if right now what she's trying to say doesn't matter. As long as she catches up it's all good. **insert huge eye roll here** Easy for you to say. Your child can explain to you their needs, wants, whys and how's. Your child can ask simple questions, say simple words and isn't stared at blankly when they speak to anyone outside of their family, just because they babble instead of trying to string words together. During her assessment, we were told she was developmentally on track, minus her speech. We were put on an at home speech therapy program for 6 months. And we're working at it but who wants to feel like everyday speaking with their child is homework. I know I don't. And I try my hardest but sometimes I feel like my hardest isn't enough. Maybe I just don't spend enough time with her, or talk to her enough. Maybe I'm just not present enough. And I will admit I'm struggling, I'm struggling so much! I just haven't quite figured out how to have one sided conversations all day long without feeling like I'm going crazy. I'm sure its good for her development, I know it is actually. But having a one side conversation where the only answers I get are babbles, grunts and pointing, it gets old real fast. And if that makes me a horrible mom for saying that, I'm wearing that title proudly right now. Because until you're in my shoes you can't even begin to understand the frustration of not having your child answer you back properly, especially when she tries so hard too. She understands me, I just wish I could give that back to her. I wish I could understand all she babbles about. I wish I knew what smart ideas she was trying to tell me. I know somewhere up in there, is the cure for world hunger and cancer, and the ability to end wars with a sentence. And maybe that's why she just hasn't chosen to speak yet, maybe we're not ready for all she has to say. But my goodness I just wish she could say something, something about her day, something about how she's feeling. Anything, really. And some of you are probably laughing at me, I see you, you're the ones who pray for the day you're child just stops talking for even 5 seconds. Don't wish that away. I pray for the day my child begins to speak and is understood and is heard. When your baby fails to reach developmental milestones at the regular rate of other kids, it makes you feel like garbage. Maybe it's social media and the constant comparisons of children, but honestly I think it's just life. We all want the best for our children and when we can't give them that no matter how hard we try, its frustrating, it's defeating, it's literally exhausting. I get its normal, these things happen more often than not. But I just want to hear words, please, thank you, no, yes, any. little. thing. at. all. No matter how big or how small. I just want to hear her little voice bellow it out. I know one day I will look back and laugh about how I wanted noise and words, when I can't get two seconds of peace and quiet. But right now I yearn for noise, I yearn for words and mixed up sentences, and arguments as to why she can't do it and why she feels she needs to be allowed to it. I know I'm not a shitty mom. But I just wish I could so badly give to her the words she works so hard to convey. I know God has some sort of reason behind all of this, though I may not see it yet. So I'm trusting, I'm trusting that He will carry us, and trusting the fact that the world just isn't ready for all Addiyn Margaret Elly Thompson has to say yet. And when she does speak, she will move mountains, she will calm nations, she will bring peace to those around her. Because she is fearfully and wonderfully made and oh so loved by everyone. And no speech delay or diagnosis is ever going to change that. Christmas is my favourite holiday, ever. I am essentially Buddy The Elf, all November, December, and for most of January! Christmas holds a special spot in my heart as it was my grandpa's favourite holiday, I feel him more during the holidays than I do all year long. It brings back fond memories of him here with us all, and of all the things my parents did with us as kids, that I now do with Addilyn and Paul. As we got married on November 21,2015, a lot of our Christmas traditions started then! We put our Christmas tree up in November just before the Toronto Santa Claus Parade ever year! So usually mid November! We have special ornaments that go on the tree every year, in memory of those who can't be here with us, our fist Christmas ornament, things my sister made me back when she was little! I literally keep every little thing. Every Christmas Eve we attend our church's Christmas service and are as always blown away by the amazing message they give!! And every Christmas morning we go over to my parents house for Christmas breakfast and gifts and then Christmas night we attend Christmas dinner with Paul's family. Last year in 2016 we started our annual Thompson Christmas Party where we have our friends over for a turkey dinner and game night!! We also have many, many, many family Christmas parties between both of our families, and we do Secret Santa for both our families! This year gift from Paul's side was a beautiful bench from my sister in law Burgandy. The bench is to honour my late Grandpa. We have one a bench in memory of him in Port Dalhousie where we all use to go regularly for coffee meetings. She had one made for me so no matter what the weather we could always have coffee together! We also made OllieBollen and Apple Flappen as a family on December 30, to ring the in the new year!! These are dutch desserts, and are made from my Oma's recipes from Holland! I love traditions, I love making memories and honestly just love the family time that the Holidays create for us!! I reached out to some other mamma's on Instagram and found out what their traditions were! One that really stood out to me was @lauabraxton15 as her little's are around Addilyn's age ! One being 1, and the other being 2! Her family traditions they've just started this year was opening Christmas jammies on December 1st so her boys could wear them all month long!! And on Christmas Eve opening one present. Then on Christmas morning they wake up and do gifts and Santa presents and then head to her moms for breakfast and more gifts ! On Christmas Day night they have one big meal with families from both sides!! I love seeing Laura's posts about her boys, and family, and she has an amazing Youtube Channel she just started that you should check out as well! I honestly am so sad Christmas is over, but am looking forward to 2018 and ringing in the new year with just our little family. Leave me some comments on how you celebrated Christmas! I love hearing how people enjoy their holidays! I've also included a very select few of our Christmas pictures, we took so many it was hard to choose!! Addilyn's reaction on Christmas morning when she found out all the toys were for her is by far my favourite! Merry Christmas & Happy New Year Everyone!! I feel like all of us parents at one point or another have been plagued by the fact that are children have been sick. So we whip out our homemade remedies and we call or text our moms and ask what did you do when we had a runny nose? Or some of us take to Facebook and ask the mom Drs of the world WHAT DO I DO!? But what do you do when you can't do anything at all?.. When no amount of essential oil or hugs or kisses, or Dr visits is going to fix what is happening inside of your baby. Your child, the one you're suppose to be able to keep safe and free from any harm or danger. On July 7th I took Addilyn in for her 9 month check up, her Dr requested. During this appointment I received results of an ultrasound done on Addilyn's head months before in March. The ultrasound was done because the doctor had noticed some abnormalities within her head and brain. I remember after having the ultrasound and staring at Addilyn, I just kept repeating there is nothing wrong with her she will be absolutely fine. But I guess the saying goes never judge a book by its cover, you never know what someone is fighting...... She let us know that Addilyn had a smaller than usual soft spot, as well as excessive swelling in her head. This was all the result of a cyst sitting on her brain. It measured under 6 cm, which kept me hopeful and had benign tendencies. But I can tell you everything that came after that was a blur and the Dr had to repeat herself a solid 5 times before I heard the rest of the diagnosis. She told me Addilyn may be delayed as she grows, we learned we could not do much for her besides watching her for any discomfort or sudden pain or excess swelling. I remember thinking why us, why her!? I fought SO long for her to be in my life, I fought tooth and nail to deliver her, and then God goes ahead and gives her a cyst. How in the world was that fair to either of us!? For the next few months after the diagnosis I struggled with my faith. Even now today, I'm still struggling. I trust God with all my heart, and all my soul. But I can't help but feel betrayed, and angry and bitter. SO bitter. What an ugly characteristic to be. I know he only gives his toughest soldiers his biggest battles but I wish he didn't put so much trust into a 1 year old. So what do you when you can't do anything at all? You pray, and when you think you're done praying. You pray some more. And then you embrace every second, and you enjoy every moment. My heart aches during the hard days, and those are becoming more and more frequent as she gets bigger. But I am thankful for every painful cry, and every time she pulls her hair, and every time she hits because she just wants it all to go away. Because she's still here, she's still breathing, she's still my baby and though we have hard days. The hard days make the good days 1000 times better. See I thought I could do it all on my own when it came to her health, that me alone, I was the answer to cure her. In reality I need to just let God do what he has planned. So far he hasn't steered us wrong. And though we may not always see eye to eye, I know if he brings us to it, he will bring us through it. So as this blog post ends, I pray you embrace all your hard moments and enjoy every good moment you have. I pray you never have to face what we're facing and I pray if you do, you know you're never alone. -Becky Today's weather sucked, actually this week the weather has sucked. Thank goodness for DoTerra Wild Orange to get our spirits up and get us moving!! We've managed to get outside every other day but today the dark clouds, wind and off and on rain got the best of us. So we decided to cozy up in our pj's which later turned into Addilyn in a completely non-matching outfit because of a dinner incident and had a well deserved girls day in! We spent the day baking and eating and she sang to me during every. single. meal. See picture below for how beautiful that looked. I tell you, it's a good thing she's cute. We also got to organizing all her new toys and finally getting them downstairs into her toy room, instead of upstairs in our spare bedroom. We even had time for a tea party tonight during the Leaf Game! I think as she gets older i cherish more and more, the days I can just spend inside her and I doing absolutely nothing. The days that are spent playing with a tea set, and eating fake sandwiches and hearing her giggle every time I "pour" her a new cup of tea and then drink it on her. Watching her explore all her new toys and babbling to me all about it. She's not speaking one word I know but its like I understand exactly what she's trying to say. We finished off our girls day with her new star lights, and snuggles in her rocking chair. We literally did nothing this entire rainy day, but it was everything to me. We hope your rainy days are just as wonderful and loving as ours was. -Becky |
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