Auj is beautiful. She's like a little Nordic princess; complete with fair skin, yellow hair, and deep blue eyes. I don't think I exaggerate when I say she's a gorgeous child. As is her brother, except I suppose he would prefer the term handsome... Anyway, I could talk for a very long time about how wonderful and beautiful the kids are, each in their own way. Auj is not only gorgeous, but has uncanny musical sense and rhythm and some of my favorite times with her are when she is really "getting down" to one of her favorite songs (the kids have recently discovered "Alabama Shakes" and they are in awe!). Aid (as we sometimes refer to big brother) has a knack for remembering lyrics, so they are quite a pair with Auj humming and keeping time and rhythm and Aid flailing(dancing?) and screaming the lyrics at the top of his lungs! Every parent wants to think they will have perfect, gorgeous, genius children who will never have any trials or adversity thrown at them in their entire life and that their children will be loved and accepted by everyone they meet and live happily ever after, The End. However, as humans, there's no such thing as 'perfect' and the definition is so broad and subjective that no one even knows what perfect really means anyway. Who is perfect? Not me, not you, not the head of MENSA, not the model on the magazine cover. We're not perfect, we're all DIFFERENT. And as the song says, "that's what makes us beautiful." It's why Aid and Auj make such a great musical team, one has the music, the other has the words, together they complete the song. That being said, as parents, we have some concerns about Auj. Some of you haven't seen her in a long while and a couple of you have never met her at all. She's different. She has her own way of seeing and doing things. She doesn't say much, really only a word when she thinks it's necessary, though sometimes she will surprise us and throw out a new word here and there. She is definitely more vocal at home with just me, Mark, and Aid, but she still doesn't even speak in short sentences or even two word phrases yet. She seems to be better at repeating words she has heard someone else use rather than coming up with them on her own. She also has recently developed some odd behaviors, like being extremely distressed and hiding behind me or Mark and covering her ears when she hears 'loud' noises like cars or a lawn mower. In the last few days, she has developed a new fear of walking down the stairs (I've been trying to keep her from going up and down them from the time she could crawl and now she just stands at the top and cries until someone 'saves' her.) She tends to watch your mouth and not your eyes when you talk to her and some of the time seems to sort of be 'in her own world' you might say. It's not unusual for us to call her name 4 or 5 times before she acts like she's heard us and gives us her attention. She loves music and is usually humming a song and for the past few months that song has been 'Jingle Bells.' Over and over in different types of voices. Some of you already know our concerns and some of you are already seeing where I'm going with this. We've spoken with our family doctor and he agrees with us that Auj needs to be seen by a specialist. We are currently in the process of getting a referral and appointment setup with a place called Schmeiding Center. This is a clinic that specializes in screening for a myriad of things, such as possible developmental delays, speech/language delays, as well as ASD, or Autism Spectrum Disorders. The last of these is our main concern. Auj meets a lot of criteria to be "on the Autism spectrum," as they say. We don't have a formal diagnosis to confirm this (and considering the waiting lists, probably won't for some time), just our own observations and suspicions and maybe maternal instinct if you believe in that kind of thing... We may be wrong, we may not even be in the ballpark, but we know that something is different about our Auj. She's not like most kids her age. This isn't necessarily a bad thing, but her lack of speech, erratic sleeping, and recent developments like newly occurring fears and sensory issues that cause her to scream when getting her teeth brushed and when getting strapped into the car seat seem to be causing great frustration, not only for us, but for her as well. Some of you may have heard over the phone or better yet, witnessed one of her tantrums in person. Those of you that have know that she is not just fussing or slightly upset, but having a screaming until she's out of breath, falling on the floor, kicking, spitting, hitting, pinching, slapping if you try to touch her tantrum. Those aren't exactly normal and to tell the truth, sometimes we aren't even sure what causes them. Sometimes I don't know if she does either. We want to get the best help possible for her and to find out what we can do and how to help her cope with the world around her that she seems sometimes to just not understand. It's tough to be two on a good day, let alone when something is keeping you from processing 'everyday' things in a normal way and they morph into something foreign and scary. I spoke with the clinic we are trying to get her into today and was told that we need to complete the 'new patient' paperwork and after that we will be contacted by a clinician who will tell us what doctors we will need to be seen by and hopefully be given an appointment date at that time, which is great. However, we have heard from other people and the nice man that I spoke with today confirmed, that the wait time to get in to their doctors is in the range of 6-10 months. Yikes. So, when this blog is written and posted, I will find the paperwork online, fill it out, email it and wait. In the meantime, we are beginning a gluten free/casein free diet in the hopes that it will help her. This is commonly referred to as a GFCF Diet and has quite a bit of evidence backing it for being beneficial for kids with different forms of Autism. Apparently, most people with Autism cannot rid themselves of the peptides leftover from gluten and casein (which is a protein found in most dairy products and a surprising number of other products). Since they cannot get rid of these things through digestion as you or I might, they build up in their bodies and become toxic. In fact, they have an opiate effect on the 'Autistic brain,' you might say. I found several interesting websites that discuss this and I've been doing some fascinating, if not a little disturbing, reading about the effects of these things on people (specifically children) with different forms of Autism. I told you at the beginning not to freak out, but if you are reading this and still thinking, "oh no, there's no way she has that!" or "poor Auj, will she ever be normal?" or maybe you just have a mental picture of a child sitting alone in a corner rocking and flapping their hands, unable to speak or communicate in any way. We can understand those feeling to an extent. Believe me when I say, our reaction has not been flippant nor have we exactly taken this in stride as they say. I have had every emotion possible in the last couple of weeks after finally admitting to myself that Autism seems to be the most likely cause of Auj's "quirky" behavior. I have been upset. I have been worried about what her future will be like if we do receive an ASD diagnosis. I have been sad. I have gone through some sort of a grieving process for the child I expected to have and the one I actually have. I have cried. I have felt completely overwhelmed at even the prospect of what it will be like if the specialists confirm an ASD diagnosis and the possibility of therapies like speech, occupational, behavioral, etc. and also at the prospect of the travel it will take to receive them (in case you hadn't noticed, our tiny town doesn't exactly have a resident speech and language pathologist...). Mark and I have been concerned at the financial toll this might take on our already skinflint budget. We have had numerous discussions of the what-ifs of the whole process. In short, I do not expect any of you to calmly read this and go, "Huh, that's weird. Didn't know that was going on, but surely the doctors can fix her up." In fact, I hope you don't think that. IF this is Autism, doctors will not "fix" her. There will be many, many things everyone around her will be able to do to help her, but no one will ever "fix" her. It will be a part of who she is. And yeah, IF this is Autism, it will be "kind of a big deal." I want to explain to you though, that we have also felt an enormous amount of relief at discovering that there's a possibility Auj has Autism. Let me explain. As a mom, your children are the most important thing in life. (And I am going to be painfully and brutally honest in my next few words, so please don't judge me until you're completely through reading.) Aid and Auj are the two most important things to me in the world. I would gladly with a smile on my face lay down my life for either of them. That has been true for both of them since the second we found out I was pregnant. When Aid was born, it was like I already knew him and it was very difficult even just hours after he was born to imagine that we could ever go back to before he was here and live without him. Mark and I both seemed to instantly bond with him and it seemed as if he had always been with us. I fully expected to feel this way when Auj was born too. And it shocked and disturbed me when I didn't. I loved her. And if asked, I would have died for her from the moment I saw her. But I didn't feel as if I knew her. I didn't understand nor, at times, like this beautiful baby girl. I'm not saying I knew there was something wrong with her the minute she was born, just that I felt a disconnect between us. I've struggled with this for the past 26 months. I've felt that I was living with this strange little girl who either demanded patience I didn't have or simply ignored me as if she didn't need me. And I admit, I have felt a little resentment sometimes when she gives a huge hug to someone she barely knows at church or instantly becomes all smiles because Daddy is home. The best way I can think to describe my part in raising her thus far is to imagine you are working on a 1000 piece puzzle, but you're missing about a third of the pieces. You have enough to give you an idea of what the picture should look like, but not enough to see the details or the beauty of the finished product. That has been my life and relationship with Auj. We have needed each other, loved each other, and spent two years looking at each other from a distance, trying to figure out why the picture is so hard to see and wondering where the missing pieces are. We've been trying to imagine the details of one another's mind and failing to see the beauty in the "whole picture." So when I first started considering Autism or even just a possible 'developmental delay,' I went through that range of emotions I told you about above. But oddly enough, my primary reaction has been relief. Relief and understanding. There is not something wrong with Auj. There is not something wrong with me. We simply haven't had the tools or knowledge to fully comprehend and accept each other. On her part, she cannot understand why I make her do things that 'hurt' like brush her teeth or wear clothes nor why I won't let her do things she seems to enjoy like eat chalk or pour things in the floor to see what will happen. This has shown itself in her seeming emotional distance towards me. Kids are intuitive and I believe she picked up on my frustration and often irritation with her very early on and in a way, 'gave up' on trying to make me understand until recently. On my part, I haven't understood why she can't 'behave' and stop throwing food in the floor or trying to drink the hand soap. I haven't understood why in the world she refuses to sleep through the night or why she would never stop screaming as an infant. I can't count the number of times I have asked her in frustration, "Why won't you just start talking?!" If the roles were reversed, I wouldn't have tried to get close to me either. So, in a funny way, knowing that I'm not insane and there really is something different about Auj has broken down a wall for me. It turned my thinking from, "I don't know what else to do with her," to "What can I do to help her?" I feel like someone is handing me those missing puzzle pieces one at a time and slowly but surely all these details are emerging and the final picture is getting clearer and clearer. Auj may not like being compared to a puzzle, she would probably rather I had used a musical analogy and compared her to a song (most likely she would prefer to be an Adele song or maybe something by Joni Mitchell), but I am lacking in any musical talent and can only flail (dance?) and sing lyrics (off key usually) like her brother.... I said in the beginning, I'm not usually this much of an 'open book,' but I felt that you all should know what's happening. And I also wanted to give you all the chance to both process the information and educate yourselves if need be. I know that most of you are not around us 24/7, in fact, none of you are, and you may feel that I've given you a lot of information needlessly because you won't likely be interacting with Auj any time soon. I want you to know that I did not write this so you would treat her differently or think of her in a different way. I wrote this partly to let everyone know what's been going on with us and partly to try to explain that something like this isn't something you should be scared of or disturbed by. I wrote it to ask you to keep an open mind and know that the things you expect aren't always what you get. And sometimes it just takes looking a little longer and harder for something to finally be clear. The process of getting a diagnosis and plan for whatever may be happening with Auj is far from over, in fact, hasn't technically begun, and already I feel like I have bonded more with her in the past seven days than I did in the past two years. I am a fiend trolling the internet for GFCF recipes, where I can find the best neuropsychologist and developmental pediatrician. The house has gotten steadily dirtier while I sit and stack towers of MegaBlocks with her and make things with PlayDoh for her to destroy. And I know that whatever we're told when we finally get to see the right doctor, we are ready to hear it because by then, it won't matter. Auj is Auj no matter what label or diagnosis they might or might not give her. And I can now honestly say that I am ready not just to be her mother in charge of basic needs such as hygiene and nutrition, but that I am here to advocate for her, to be her best friend and biggest supporter. I won't just give my life for her, I will spend the rest of it doing whatever I can so that no one, parent or child, has to feel distanced or removed from the person they should be closest to and who should understand them best. And the more I learn, the more I understand that those missing puzzle pieces don't belong to Auj;s puzzle but mine. Each piece has been a little bit of knowledge I didn't have before. It's true that knowledge is power. The more I can learn about what makes Auj different, be it Autism, speech/language disorder, developmental delay, whatever; the more power I have to strengthen a bond that should have been forged two years ago. In the meantime, I think I'll watch her dance....
I am posting a link to the Autism Speaks website and while you don't have to go there, I highly recommend it. Especially the section titled "What is Autism?" The site has some interesting facts and statistics and debunks some myths about Autism as well. There's also a section where you can read the signs and symptoms and if you do, you will notice that not speaking in two to four word sentences by the age of 24 months is a "red flag" symptom. This symptom, in fact, is what started our search for answers and what led us to the possibility of Autism in the first place. If you spend a little time on this site, you will find that there are many different types of Autism, ranging from severe and nearly debilitating to mild and even high-functioning. There are many diagnoses under the Autism Spectrum Disorder umbrella. While I am obviously not a doctor or any kind of medical professional or expert, my personal feeling is that Auj leans toward the PDD-NOS diagnosis more than Classic Autism or Asperger's Syndrome. PDD-NOS stands for Pervasive Developmental Disorder Not Otherwise Specified. In short, she meets some criteria for Autism (for example, has trouble with eye contact and communication) but is typical in development of others (for example, can pretend play and point to and bring to your attention objects of interest). I'll say again, we do NOT know that Auj definitely has Autism in any form. We DO know that she is different. And Mark and I feel that the best thing we can do for her and for our family is learn all we can about the possibilities and tackle this proactively in ways that we are able to such as changing her diet and learning and teaching ourselves and the kids a few signs to help with our communication gap. Maybe in 6-10 months we'll be surprised if they see her and say, nope, not Autism, she just needs some speech therapy or something along those lines. Maybe we'll feel silly for being so worried and forcing everyone on a crazy new diet for no reason. Maybe we'll find out that she runs in circles not because she is self-stimulating or soothing, but because she just likes to run in circles. But there's no room for maybe when it comes to our gorgeous musical duet of children. So, for now, we're not taking a chance of letting her go a day longer without letting her know we are all here and we are doing everything we can to try to understand and help her and to love her (not just quietly and from a distance) but in a way she never has to doubt it.
Click Here to go to Autism Speaks!
No comments:
Post a Comment