How therapy really IS life changing

This last Saturday I had the honor of speaking at Grayson's therapy center, Mighty Oaks, annual fundraising dinner and auction. I wrote what I wanted to present weeks in advance and then set it down and didn't come back to it until Thursday. Mighty Oaks had asked me to speak about what they have done for Grayson, the benefits we see from it. I was worried that what I had written had too much to do with me, with our journey, than with the fruits of their labors. In the end I decided to stick with what I had, including a few more lines that were suggested but a friend who happens to be a wonderful speaker as well. The auction was a success, many funds were raised that go directly to scholarships that pay for therapy services for children whose insurance does not cover anything or much of the services they desperately need. It was a fantastic experience and I hope the people at Mighty Oaks truly know that what I said was genuine and from the bottom of my heart. I have had a lot of people ask me if it was recorded( I HOPE NOT!) so I'm adding it here for everyone to read. I hope you enjoy, and if you live somewhere that you can find a pediatric therapy center to support in any way, please, please, PLEASE do so! We are so blessed to have insurance pay for his visits. Not many of us are and it is so life changing for these kiddos.

I never knew that the hardest, most gut wrenching part of being a parent would be the day we were told our son had autism. For year and a half he had been receiving speech services with Mighty Oaks but we had heard and been telling ourselves it was a speech delay, that the therapy and his surgery would fix everything. I didn’t know then what would be ahead and that truly, my son is NOT broken. He needs more help but he is absolutely, wonderfully, Grayson.

 

I took for granted, some, the support Mighty Oaks offered us. I was so busy waiting for the magic day of normalcy that while I appreciated the staff, loved and valued them, it was just a stage. It wasn’t forever, it was just a stepping stone. We faithfully brought Gray and spoke lovingly of Ms. Melinda and her ever listening ear from school to sleep to potty training.

 

And then. Then we got a word, a label, a diagnosis. It changed our whole world. One 4 hour appointment reworked my entire view on life forever. And at first… it was grief and tears and anger and questions. All the struggles our boy, and we, went through may not be temporary. I constantly played his life out in my mind. What will high school bring? Will he ever be able to live alone? I begged medical professionals for opinions, for prognosis, for a crystal ball so I could know what to prepare for. But none of them could tell me or help ease my fears.

 

I spent a while being angry and searching for blogs, research, centers, resources, anything. For a while I just was. I barely made it from day to day with the weight of my thoughts. I thought we were alone. I alternated from wanting to seclude my boy to wanting to challenge the world to stare or comment. All the while I thought we were alone. We still faithfully brought Gray to speech and then also to occupational therapy. I think that Christmas was the first time after his official diagnosis fog that I started to realize there was a place, a safe haven for my boy, for others like him, for me. I remember going home and crying after the Christmas party. I had a place I could take my boy without judgment or questions. We could go to a party without those weighty stares and feel welcome. Gray could be loved and presented with a gift thought out just for him. Our oldest could go to a party without mom and dad alternating to the car. And if he did meltdown, everyone would get it. It was an amazing feeling.

 

We have incredible friends and family. Truly, But no one gets that look in mine or my husband’s eyes quite like another special needs parent. There is no judgment or pity, just understanding. No one can listen to my concerns and yet love and understand our boy like his amazing mighty oaks therapists. We found our place, our haven. Thank god. I can’t imagine where we would be on this journey without their support and guidance.

 

Any disability, any delay is hard. There is so much misinformation and stigma associated. There is so much isolation and hurt and fear. We NEED places like mighty oaks. We NEED these champions for our kids. Some parents can stand on their own, but most of us need our village. Mighty oaks is an integral part of that. Grayson adores them. He loves coming to therapy. I would move heaven and earth to make sure he could attend. If you could see our life, our boy, almost 2 years ago you would be in awe of the difference and I know without any doubt, his therapy is a key piece of that puzzle.

 

We are blessed beyond measure to be able to have these services 95% paid for by our insurance. My heart quite literally breaks over the idea that any child with need may go without these life changing therapies for any reason. In my days of fear and anxiety and doubt Gray’s therapists have been a beacon of hope. If I just need to vent, to express to someone who, blessedly, gets it, I can do that. Mighty Oaks gives so much more than therapy. They provide a safe place, not only for our kiddos, but for us. For moms and dads and caregivers. They give us a place of comfort and understanding and love. The importance of that should not be lost.

 

I’m not educated in special needs, aside from the last 4 and a half years with our boy. Some days we feel so confused and unsure. But this place, mighty oaks, has given us a refuge. A place for our boy, and a place for us. We have a safe place to land and talk and question and rejoice in our successes. Our lives are forever changed by these wonderful people. I can never say enough or convey enough their value. Mighty Oaks is one of the best things to ever happen to us and our son. These people are real life heroes for our children. Every dollar you give goes directly to changing the lives of children and families. It gives mom's like me the miracle moment when my son can look in someone's eyes and say" bye bye" or finally be able to tell his dad that it is the ketchup he wants thus allowing us to help him and understand his world,  to keep him from melting down because no one can understand what he needs. These services save relationships and families and bring tremendous joy. Please consider giving generously to this unassuming place that changed our lives. There are many children like mine who can't come, many mom's and dad's who don't have help like this and what they need is for the village to reach out and bring them in. Your contribution will help us do that. I am honored to be able to be here tonight and speak about the impact Mighty Oaks has had on our family. Truly, thank you, for everything.

Yesterday was a rough day. Nothing happened, specifically. Just a normal, ordinary day. But everything felt like too much for me. I wonder how often my boy has those days where the sound, the contact, the socialization, feels like too much but he can't tell me. *insert the crying from yesterday here* I pretended like I was fine, with the exception of one brief conversation with a  dear friend. I'm starting to feel anxious about school. About the issues we've encountered already and the worriedness I am feeling about dealing with his teachers after the tension of last year. About being able to really stand my ground and present a strong, determined face at all times. For my husband and I to be his advocates, to speak out for him, hell, for all kiddos who have a need. To be able to speak words that mean something in this broken system of ours and not just speak out of anger. To formulate sentences that have impact and worth, to help someone else, to help our child, to communicate with those who have the responsibility of being involved in his life in some way and not feel like THOSE PARENTS. Not to feel like they go " oh crap, here they come" whenever they see us. I don't want to do that but I sure as heck am going to make sure that not only my child, but every child I can is getting what they need. And that seems to make me persona non grata. Which sucks.

But. But then I remember something cool that happened this weekend. Gray loves the water. Lord help us if he doesn't have a life jacket because he is jumping in whether you are there or not. He has no fear. He goes down a water slide like its nothing. It scares the crap out of me. Taking him to swimming lessons is out of the question. He would never follow the direction so we work on it. We've tried to teach him to kick his legs, paddle his arms but he doesn't really care, he can float around in his life vest and work his way from one place to the next. And then, Saturday, all of a sudden he's kicking his legs like a pro and paddling his little arms. And then I remember. One of his former 1-1 at his private preschool took him for the day, because she asked. Because she loves him. Because she see's the wonderful little boy that we do. She asked to take him for the day. And if that wasn't close to the best day of that kids life, I don't know what was. They went swimming and he came home ecstatic. The entire evening and next day he kept telling me " bubble! Had fun!" (bubble=water). And somewhere in there she must have taught him to kick his legs or one of the other kiddos there did. And it stuck. All those times of me telling him, showing him, and he remembered because she told him. It's a beautiful thing and I can't express my gratitude to this amazing lady for just simply loving my kid. In our world where a lot of people find him perplexing, difficult, whatever, she loves him. It feels like magic to me. I'm so grateful that there are those people in education who not only love their jobs, are fantastic at their jobs, but that care enough about the kids to take him over summer break just because.

I can't stress the importance of these people enough. In my world, everything can be so scary, so unknown. Every day is different, we never know what to expect. I need those supports. I need those people who will work with him, love him, help us, reassure us, have those hard conversations about what we need to be doing and be there. The relationship of a special needs teacher should be as big with the parents as it is with the kiddo themselves. I can't do this alone. I don't know enough. I feel so uneducated on what he needs, what's best. I'm simply guessing, using my mama gut half the time. I need these champions to walk this with me, the help Brad and I make educated guesses on what step to take next. Thank God we've found one person and I'm anticipating kindergarten where I know some of the lovely ladies that will be in his classroom. I feel peace with that. I feel like they will take my frantic call when I need help. I'm so grateful for the special people we've already found to be his "team" and anticipate recruiting more, because well, my kid is awesome. Like, really awesome. And if you can't see that, maybe you're not awesome. Just sayin'.

*Image is of our pics from our church's Mothers Day photo booth. Gray thought it was the best thing EVER!

Earning my autism PhD

I haven't written anything in a while. There is too much in my head and too much in my heart. I want to write DAILY of the victories that we have.
Grayson said 5 words together. At one time. In a sentence. I'm not sure if the impact of that is lost on you, but let me assure you, that's HUGE.

He has recently started not only receiving hugs, but giving them. He's never been opposed to touch, thank God, but he never initiated the contact until now. My child GIVES ME HUGS. Seems so little, right? So simple and small and overlooked.

 He looks to the sky when I point to a bird or a cloud. It's so little and so big all at once.

I'm so encouraged by the progress and ecstatic that he's opening up to the world in the way that seems normal to me but then I doubt myself at how hard we push him. There's nothing wrong with him. I need to alleviate the anxiety and stress that his body feels when things are too much, to help him learn how to cope with that and give his body and mind what it needs. But let me repeat.... there's nothing wrong with him. But he still needs services to be the best little Grayson he can be.

 In a world where we are supposed to be celebrating diversity I still get dirty looks in the mall when my kid decides to interpretive dance, rather than walk. I have to stare the woman in the face sitting across from me in the packed restaurant, at 6 pm, in the middle of the floor because that was the only table and lord help us we needed a booth to keep him sitting, daring her to comment to me on the fact that my child is not sitting quietly on his rear end like her face is telling me he should. And he was SO well behaved. He sat, mostly. He ate. He chattered at us. And to those who know, the unbelievability that we went to this restaurant, because he asked(let that one sink in for a second) and no one left in tears or took him to the car half way through... that is like a freaking Olympic gold. But still. But still our kids with differences, any differences, are stared at. Talked about. Complained about. The need to stay home and tuck him away, keep him safe, keep me and my husband and my older child safe from stares and words is so overwhelmingly large. I've said it before, I'll say it again, some days I want to slap a label that says " I'm autistic! Stop glaring at my mom!" on him so that people get it. Other days I don't want anyone to know there is anything different about my child because some days different=bad. Am I right? But the thing is, I do neither. We go to the mall and we interpretive dance. And some people glare at me, and others laugh and tell me what a joy he is. Because HE IS A JOY. He is a ball of light and happiness and motion 99% of the time.

But here is where my new PhD is coming in. I wish you could have asked me in November what I knew about autism so you could see how far I've come, we've come as a family. Oh the things I thought I knew. I knew nothing. I still feel like I know nothing. This degree is hard earned. It's earned by experience, trauma, joy, melt downs and wins. It's by reading. Oh the reading I do. Sometimes it gets to be too much and my husband finally says " No more blogs for awhile, ok?". Sometimes I'm seeking answers to questions I don't know how to ask. Sometimes I'm seeking comfort, but mostly I'm seeking knowledge. We see an amazing LMT through a study we are a part of. This woman is incredible. She has so much knowledge and insight and all the things I need and want to have and don't know how to gain. We talked yesterday about articles I've been reading and the impact of QMT on autistic kiddos and how it works. And why it works. And all these big words, medical words that I have no idea what they mean other than I can start to wrap my head around the very basics of the make up of an autistic kiddo. And I'm learning, ever so slowly. But I want to know it all now.

 I want to be this fountain of knowledge that can advocate for my child and understand him, his needs. I want to send a thousand emails and make calls to the researchers, doctors, therapists, MOMS AND DADS who get it, who can teach me, who can answer my questions. But I can't. I don't know where to start. And I realize, I must not be the only one feeling this way, right? So, how do I find these people, how do I become one of these people for someone else? How do I help someone with my words the way my favorite blogger, Jess,adiaryofamom.wordpress.com does? I don't know. But I'm trying to figure it out. In time, maybe my posts will become beautifully arranged pieces that will resonate and be impactful. Maybe someday my words will help someone heal or understand or know its ok to not be ok. But for now, they will be scattered, as I am scattered. They will be a mash of joy and fear and jumping from one place to the next. But I'll get there. I hope.

What is normal?

This is a post from my facebook page, Choosing Beautiful- Our life with ASD  from a few weeks back. I'm struggling lately with balance. How much is TOO much for my 4 year old. How many therapies is the magic combination? What will be the best thing for him? In the middle of that, all of this feels so hard. So not normal. Sometimes I want to hide away, hide him away so that no one can ever look at him differently. But, that's not fair to him. He has to learn and grow and interact. I've been quiet the last few weeks because I have so much to say that I can't seem to say anything. But it's coming. In bits and pieces I'm finding the words to help myself and maybe someday help others. Follow my page on FB too!  https://www.facebook.com/Choosingbeautiful 

 

I don't love this photo of myself. But it's one of the few I have of the 2 of us where he's smiling and engaged with me. He wasn't a huge fan of the sand at the beach, at first. And when he was done, he was done. But the space in between was peaceful and beautiful and though I loathe this word, normal. I'm starting to see, in small flashes, the child my baby is becoming. He was engaged with his brother, his dad, his friends. He helped Gavin bury brads feet and he helped brad dig holes. Brad said dig a hole! And Grayson went to work. So, yeah, teachers who tell me my kid does not have the ability to understand let alone follow verbal commands without pictures or being shown, go ahead and suck it. That's not kind but he's showing me daily that the things the professionals in his life tell me are not always true and right and law. We didn't stay in the sand too long, but my ball of constant motion enjoyed the sun and sand and watched the waves. We went in public, on a crowded beach, with success. He didn't run away. He didn't melt down. He let mom sit and watch and enjoy her boys playing together and apart and just be. That's progress, folks. I'll take it.

IEP, IFSP, ESCSE, CDRC... Acronyms = Frustration!

Today I'm trying REALLY hard to find the beautiful. Like real hard, folks. I'm trying to censor myself and my frustration and to realize that it's likely that my frustration is not stemming from where I'm aiming it at, but at life in general and my lack of knowledge and ability to fix things immediately. Because, you know, I can obviously be in control of all situations at all times. Right. But truly, while raising any child you entrust them to school or daycare or church at some point in their lives and it is almost always a constant source of anxiety to me that my child cannot tell me how his day was, who his friends are, etc. Sometimes he comes home with paint on him so I know he's painted! Lack of communication at home where I can see him is hard, but it's doubly hard when he's away from me. What I am figuring out though, is how to advocate for Grayson and myself and to find my voice (and hopefully in a nice way).

In December, we filled out Grayson's IFSP for the year. In all honesty? I remember very little of that meeting. I ended up having surgery 2 days prior to it and Gray had his tonsils and adenoids out THAT DAY. As in, I hobbled around on my crutches 2 days post surgery from 5 am to 1 pm and then dropped Gray with his grandma and headed straight to this meeting. In hindsight, I should have rescheduled. However, we involved his other preschool, his early intervention pre school and many members of our church preschool room team. I am obviously a super hero and felt like I could handle the meeting. I couldn't and perhaps I would be feeling differently if we had rescheduled.

I'd never even heard the term IEP or IFSP until he started at ECSE last January for a speech delay, which has evolved to an autism diagnosis, so I'm frustrated at myself for not knowing my and our rights and what to ask for, or even how to ask for it. So we sat around the table and talked about his progress thus far, what our goals were for him, and agreed to a school autism eval on top of his medical diagnosis. I think. Brad tells me that's what we did, at least. We do have common goals that will be what we work on long term- speech, eye contact, social interaction, following directions. But aside from that, I'm asked what my goals are for him. That's such a loaded question. Do you mean for today? For the next 2 years? For him when he's 18? I didn't know what to say. I still don't know what to say. There's more to this than I could have ever imagined, more to his educational plans than I had ever expected and I feel so utterly, uneducated and uninformed. And here's the kicker, he's in preschool. We haven't even hit 1st grade and I'm floundering. I will likely spend the summer reading every piece of information I can get on IEP's, what I can ask for, what our rights are, etc. I feel like I don't have enough information to be able to advocate properly for him and no one is offering that up freely.

I'm going to attempt to present this as nicely as I can and be objective. In March, we had our meeting for his school autism eval. The paperwork they handed me and the information I received verbally felt negative. So, so, so negative. I know we will have trials and we will struggle, but to have to physically read all the things he cannot or will not do is heartbreaking. To recap, what I FELT like I was told was: he has made no progress. They handed me this list and when I tried to dispute things and give examples, again, I was told no he is not. I felt like I asked appropriate questions about how this eval was done and I thought I was told that it was based on observation in class that was done by his teachers. I was too shocked to be able to respond much because let me tell you, we see progress daily at home. That is my impression of this meeting. That is how I left feeling. That is how in March, when I felt like my life was spiraling down and I was so out of control I felt. How I felt for 2 more months. I took the list to other people and said " do you see this?" They told me no. It still grates at me because I can't let things go. We got other people involved who were given a different answer on how that eval was done, and what it meant for him. In the end, that doesn't matter, but I FELT like I was misled.

Let's back up a little to where I said it's hard for me to not have communication about his day. I did make several phone calls asking about how things were coming along over the first few months. When the paper that gives me an idea of what he did (potty, snack, play, etc) stopped coming home or came home blank, I called a few times. Then I felt like naggy, crazy mom. I get it. My child is not the only one in the class, but dang it, I did call and ask. Multiple times. And then, I gave up. I let myself stew in my frustration and got more and more angry because I DID NOT KNOW WHAT ELSE TO DO.

In order to continue constructive dialogue, I'm going to skip over the next few months and the events that led to today's meeting. Mostly, it was positive. We got to air (most) of the frustrations and are scheduled to observe Gray in class Wednesday where I will present my list of things I didn't say today in hopes that I will have nothing left to chew on all summer long before I send my kiddo off on the bus in September. Here's the thing. The big thing. Being willing to advocate for your child quickly and having the knowledge to are 2 way different things. I was handed a stack of papers and told, "oh you probably get this in the newsletter but I printed it anyway". Nope. Not a one time. Why is that? Because I was not told about a newsletter I could sign up to receive in my email. Knowledge, folks, it helps.

 It feels like an agonizingly slow process as we learn what to ask for and how to ask for it. Do I think the team that works with Gray is great? Yes. Do I think they genuinely care about my kid and the other kids? Yes. Did they have some positive things to say today? Absolutely. Do I think they have the knowledge to help my child? Yep. Do I think maybe, uneducated, untrained me MIGHT know my child a little better than them? Absolutely.

 They were frustrated with us because, through the grapevine, they heard some of the frustrations I voiced to someone else that should never have made it back to them because A) that wasn't their right and B)that wasn't my intention. I needed to work it out in my head first. Ultimately I did and it forced me to have this talk, but it gave me much anxiety and it made everyone else tense as well. I could list the things that made me frustrated from today, but I think they were defensive so I'm going to do my best to let it go. I got to hear some great things that Gray is doing that give me so much hope but I'm still uncertain why we got told the things we did in March, which is very opposite to today's meeting. As much as I dread the loss of routine and structure for him and worry he may loose some footing over the summer, I'm ready to have a break from school for him and hope that I can go into next year feeling confident in our plan, that I can facilitate all of our schools and therapies working together for a common goal and that I will know more then about him and what he needs than I do today. We are learning something new every day and I think that's the beautiful out of this whole school mess I've had locked inside my head and heart since September!

Finding my voice

I'm working on the beautiful that this journey with ASD has to offer, because I know somewhere, there is beautiful. I know we will find gifts and pure joys amidst the trials and grief. I know we will celebrate every win with a zest we would not have known otherwise. And I know I will learn to let go of my preconceived notions of "normal" and let my baby thrive. But man, oh man, is it hard.

I'm hesitant to start this blog, to share the ugly, and the beauty I see every day. I'm tempted to hide, to work diligently for and with my son to achieve greatness, but never really say it out loud. There are bigger disabilities, illness, tragedies in this life. My son is healthy and whole, thank God. As I walk this road I see more and more the need for voices for autism. For champions. For mamas and daddy's who will give anything to have the world be accessible to their child, every child. I don't know how to sit quietly by and hope for better services and acceptance but I don't know where to start either. So I suppose this blog is where I will try to find my voice.

But this is more than just ASD, it's acceptance of our differences, visible or not. It's not awareness or tolerance, I'm not sure I'm even happy with acceptance. I keep thinking embrace, but that seems an odd phrasing. I'm not well educated in the technicalities of autism but you can read for yourself the staggering statistics, and increases in recent years, of autism. My personal opinion is that it's somewhat to do with more and more early detection of even mild ASD, but who knows. We need educated. Oh the stereotypes I thought of in conjunction to ASD and said "that's not my son!". There is one spectrum but no one autism, folks.

In the past months I have sought refuge in several blogs and found women who share the thoughts of my heart and mind but can voice it ever so eloquently. I lack that ability, but I'm going to try. My head is swimming with these thoughts but I'm not sure how to write them down. However, the best way to begin is simply to begin. So here it is.

Writing has always been therapeutic for me and I hope that just maybe my musings will help someone the way these ladies, Who have no idea who I am, have helped me. Helped me understand, come to terms, and even embrace this new life we have. Autism has not changed my son, but it sure has changed me, but only for the better. I'm tired of the grief, although I know I will still feel that in some ways for a long time. I'm ready to fight, to help educate, to facilitate acceptance.

I'm so blessed to have friends and family who have rallied around us in trying times but I'm ready to speak up and DO something. Even if that's just chronicling my thoughts and our victories. And hopefully, while writing this blog, it will remind me to always choose beautiful, because it's there even when I'm blind to it. Welcome.