When you have that creeping feeling of failure as an Autism parent

To be frank, I just cried for an hour. Overwhelmed. Feeling like I am doing everything wrong. This feeling comes over me and I break. But from other parents I talk to, this happens to us all. That makes me feel a little bit more reassured.

My feeling, has nothing negative to do in Emmett’s court. My negative feeling is that I am not doing enough, that I am not figuring out answers for him, that I am not helping him to the best of my ability. I sit here, still really emotional. All because I have to redo his bath therapy from the beginning once again. I feel like I screwed up somewhere. I feel like I missed a step. I feel like I did everything wrong. And this self talk is going on in my head.

Em has been scared of the tub since he would about seven months old. I was guilty of using videos on a dvd player to get through it at times, I totally admit it. That wore off. He would cry and not sit and it was just a big upsetting experience for him, and for me. I kept myself together, trying to get through it. Eventually his early interventionist at the time gave us ideas and we did them, and eventually he’d sit in a bucket in the tub. This has worked for months. But the last few weeks, it has gone back to a daily battle, a daily upset for him. If you’ve been there, you’ll get it. He gets so upset he starts that little breathing upset sound that makes my heart drop.  It’s like I am torturing him, as he stands there and I try and quickly wash him off, he looks at me like “mumma help me”. I’m stuck again. I feel helpless. And this is where I sit tonight, at the table as he has a snack with his daddy on the couch. I feel like I failed him.

I wish I could figure it out and fix it. I’ve always been a fixer, and if I could get him to enjoy a simple bath I would dance down the street, maybe around town. I feel like I am so weak sometimes. Like I am not strong enough for him. I try and be there for everything. My dedication to my son is ongoing, it’s always there. I never feel like giving up. But I feel like sometimes someone could do better than me. I watch facebook and other social media (worst idea ever right ? lol)  and think sometimes I am not doing enough, I need to work harder. I have a beautiful support system, so why do I feel this way?

I think it’s a natural human feeling. Especially on this kind of journey. My mind is one hundred tabs open everyday. And one remaining thought is always, am I doing enough? This crosses my mind every single day.

Writing this is not for sympathy. It’s to show if there are other parents out there with that in their mind, or going through times like this , that it’s going to be okay. Everything is going to be okay. I am even saying this to myself right now. My husband is in my face saying no one could come close to what you do for Emmett every single day. I end on that note. Because not to sound cheesy, but this man, my husband, knows how to connect with me, gets me to listen. And he is a cheerleader for Emmett and Dr.Phil for me (My friend Keshia will love that reference).

So ending this, moving forward. God is there for me and for my family, every second of everyday, and he will help me figure out the obstacles ahead. 2938c0aef2c871e35566133fb8369b0f

 

Advertisements

Support & Love is always a happy place

Support can come in to so many forms. Those who simply come in to Emmett’s world and see the beauty of it is support, a stranger patting your shoulder in kindness when your toddler is having a meltdown due to sensory overload, family and friends who come in to our home and see how we do things without judgement. In a way this is the way the world should be for all of us.

Emmett is fortunate to have a very fun filled adventure going support group. From Cape Breton to Yellowknife. They come in forms of family members, friends,professionals and other special needs parents who surround our family and our boy. I have had many inboxes with many mothers of ASD kids I have never met in person, but we have connected and have become support for one another. And so many seem drawn to Emmett, and how could you not be? 🙂

As you are walking through every day, obstacles come and go, some routines are a struggle. Communication barriers. They say a parent who has a child with autism has ten times the stress and anxiety of a parent with a typical child. I believe this. And I am certainly not saying we would change anything. The steps we take are all love for our son and making his world the best place it can be.

Jason, my husband, was diagnosed with autism as well at a younger age. So he seems to answer questions for us even gut feelings about things he recognizes what may be upsetting Em or what will work to teach him a new skill. He can see a different perspective than we can, as much as we envelope ourselves in to Emmett’s view, it seems like he notices some more of the deeper things. I am very proud to be his wife and to share this family journey with him. I think great teamwork means something. And he is standing next to me in his Autism Dada cape fighting the battles too.

My almost eighty year old Pop, the man who raised me as his daughter, is there day and night for Emmett. He uses the PECS with him, understands his sensory issues, and does everything in his self to make Emmett’s world the best and most calm. I really feel emotional in this because I don’t think this happens a lot. I could be wrong. But he is such an advocate for him. He is such a cheerleader. They have their routines, and Pop even reads books and educates himself on Autism. It’s just very dear to my heart to watch their bond, as it stands out.

My mother lives away, but she comes home a lot. And as soon as she steps in to the door, she goes in to that world. She will sit in a Walmart aisle on the floor and drive trains with Em. She will carry him and squeeze him when he is looking for deep pressure soothing. I have always said I had never met a mother like my own. I mean it. And seeing her be a pillar of support for Em is a magical thing. When you go in to that world, you come out so different, you see things in a way you never saw before. And she embraces him, she embraces Emmett for everything he is and does. She joins him, she gets excited, and it is a beautiful thing to witness.

I think God took extra special time to create Emmett. I seriously do. I think he placed extras in his brain that makes him so intelligent. And it’s like he has superpowers, but he has just discovered them. He is still flying in to walls and knocking things over, but eventually he will reach that place and soar through the sky. I think he soars now in many ways. He makes the sky brighter and days better. And for those who come along in to this life of his and walk alongside him, they change, they view life so differently.

I really appreciate those who support Emmett for who he is.That is what is most important to me at the end of the day. They love who he is. He is funny, he is flirtatious, he is mischievous, happy, thriving, full of pure life. We can learn so much from him. We should all try and be more full of life sometimes. He has taught me this more than anything or anyone.

My feeling is that support is one of the most important aspects of this journey. Because the more cheering for Emmett, the better. The more love, well you can never have too much love. From the bottom of my heart I thank those who send the love, those who listen to me vent about food therapy, or the ones that simply stop in and say I just came to see how you guys are. So many of you. So much love. And the whole word could use more of that. sesame

 

Educating yourself on a daily basis, this is a constant learning process

I think we can all day we try and do the very best for our child (children). For our family life,this includes therapy at home. Therapy for Emmett. He has it with his worker who comes, she leaves “homework” and we continue it in our routine. But we also so things we come up with on our own. Or try things we have read.

Right now I have been reading through an ABA step by step plan for age 1-4. I’ve watched several series on it and DVDs. As a homeschooling mom anyways I educate myself whenever I get the chance. And this is an area I have now touched base on. Emmett has already been put through a lot of it with his Interventionist. But I have been trying to put extra effort in where we can. Anything we have tried has initially been a struggle of course, but than boom it clicks one day and he is another step forward. In a way we are trying to make it so he has no choice but to communicate. And communication is not limited to speaking and language. It is so much more than that.
In the next few weeks I have more things to try and see how Emmett responds. We have started putting two objects in front of him and saying “touch train” and presented is a train and a ball let’s say. If he touches the train he gets a praise. We have been doing activities sitting in front of him, with little distraction and saying ” do this” and maybe clapping our hands as an example If he claps his hands he gets praise and a piece of a cookie. These small therapies create big things. I’ve started to incorporate this in to daily life and if we see it helping we continue it. We take breaks if he gets overwhelmed. One day at a time. Lots and lots of play. With purpose.
Just my thoughts this evening as I just finished making new cue cards. If you come to my house it’s like an Emmett workshop. And I wouldn’t have it any other way!:)

image

Why jump with both feet? Emmett’s Story

IMG_8051I have my regular blog. But I decided to have a separate one, solely focusing on my sons autism journey. It’s a sort of new adventure. If that makes sense.He was diagnosed with autism yesterday morning. The diagnosis is brand new, just the beginning. But if you know our son and family, this story is not really new. I’ll sum it up as best as I can.

Every single journey is not the same, they are kind of like a finger print. From far away it looks the same but if you look up close you can see how wide the spectrum is.This is Emmett’s story.

Emmett was about a year old when I started noticing things were a little different. Textures were the first thing. You would think it would be language, but I just assumed he’d be a late talker as he did babble a lot. If he didn’t like the feel of something he had a meltdown in his high chair. It wasn’t the taste, he would just feel it with a finger or two and be really upset. And it wasn’t just an “ew” face. It was almost painful for him. And if anyone knows me, this made me so upset. I chose my battle and stuck with the textures he was comfortable with at the time. I wasn’t really researching yet, because trust me , I became a big researcher still to this day about sensory issues now that I am more aware.

At fourteen months we went to his pediatrician appointment, he asked about his language, and there was nothing yet. He sent a referral to a speech therapist and one for a hearing test. Em had the hearing test, he passed. I knew he would because he reacted to noise quite often. This was another new thing. Loud pitches started to make him upset, like he’s want to escape. He started speech therapy. After several sessions she sent a referral to a program called All Kids, it has a different name now. But that was what it was called then. And she didn’t explain much. I didn’t really know anything until we had our first meeting with the head of it. An early interventionist, which at the time I had no clue what that was, came to our home once a week to help our child with anything he may need to work on. I remember looking at their pamphlet and it said “special needs”, and that feeling of not knowing why Emmett would be considered that. You have to understand, first baby, still learning, and I think at the beginning of these things you wonder so much. I didn’t consider it a negative term, but I was curious as to why the speech therapist thought he was.

As we kept getting closer to two years old, Emmett said about two words. “Mum” and “Up”. His communication was getting harder, he was struggling. I fill up writing this, because this was such a hard time. About a month before we started All Kids visits, Em was having a lot of meltdowns, not tantrums, meltdowns, there is a difference to me. He couldn’t tell us what he needed or wanted.Could you imagine that feeling? That desperation of needing or wanting something and having no way to communicate it. I remember than, the feeling came over of why he needed an early interventionist and this program. I couldn’t bear to see him struggle anymore. And I had no idea what to do. Jason and I would sit and talk for hours and try and figure out stuff and we felt hopeless, especially on the bad days. Em wasn’t pointing , so he couldn’t even show us the direction of where the thing he wanted was. You have no idea until you’ve been there, how much you want your little toddler to point.

Finally, the at home visits began. Gen was her name. And she opened up a whole new world of knowledge for me and therapy ideas for Emmett. And most importantly, Emmett genuinely liked her and eventually was excited every time he saw her walk in the door. This means a lot. Especially when someone is coming in to your child’s environment. It is such a sacred place.A safe place. We were only lucky enough to have her for seven months, and we had to get a new worker. But she is one of the good ones. And we remained friends. I continue to say she was meant to break the wall down for the beginning of Em’s journey. She handed us the tools. I will be forever grateful. And if I had a choice and chance, I would have hired her permanently myself to work with Emmett forever. This was my first emotional “breakdown” if you will. Her last day I cried for an hour afterwards. Because I had felt so lost before she came. She guided us and helped us. And the feeling of someone new was scary. We did end up with other nice workers. But I can’t help but say she will always be in that spotlight of our hearts in this area. She was the first touchstone of this world.

Within this time Em’s speech therapist told me she was going to send a referral for Emmett to have an autism assessment. Now, it may seem I am calm and cool today. I didn’t even cry when he was diagnosed. But I feel like my cry and fear and the overwhelming feeling of a diagnosis was back then during this time. It doesn’t mean my fears don’t come up, or I don’t get overwhelmed presently. But this diagnosis was a bit of a relief, because it opens doors for Emmett and to help make his world even better. You could not have told me that when she sent the referral for the assessment. I cried for two days people. Two days of ugly cry. This all did happen. I went through the time of denial. Things began to change though over the next few months. Within the two years the referral was sent and when he had his assessment. I opened my eyes, I opened them in to making the best life for my son no matter what. I cut out pictures of his bottle and food he liked and stuck them on the fridge, and he picked up right away what they were for. We jumped and applauded every single accomplishment he made. He ended up learning PECS and still has things to work on, but can now say “bottle” and “cookie” and not even grab the PEC for them. There is a lot to say. But in short. He had lots of progress. But we knew there was a possibility he had autism. I read Temple Grandin’s books, and every other book I could find that made things clearer. I read a lot of blogs too. Youtube videos, you name it. This is when my researcher hat was put on in high gear.

So we arrived at the day of finding out our answer. Amazing doctor. Couldn’t be better at his job. And as we sat there waiting until he came back. I remember Jason and I looking at one another with the same mutual feeling. But it’s like we were okay. I thought I would break and all these things crossed my mind. But we were okay. If you see Emmett, he is just so happy. His world is beautiful. And if this answer was autism, it only gave us more resources to help him in that world. And that was the focus. And is the continued focus.

It’s only been twenty four hours and I sit here tonight with Emmett, he keeps coming over for a hug, he loves to be squeezed. And all I can think about is how special he is. How that if we stay positive and go along with him, he will notice. Children notice. If you are there for support, they know it. The doctor even said yesterday how much he could see the love Emmett has for Jason and I, and the love we have for him, and at the end of the day, this is what matters. I have always believed you embrace your child, why wouldn’t you? God has created us all, and we are his masterpiece, every last one of us, and we all shine our individual light in to the world. Let your child’s light shine. If someone thinks it’s too bright, than they can choose to live in the dark. They do not realize the beauty they are missing. Our three year old is the most beautiful little soul we ever did see. And we are so lucky to be his parents.

I chose to name this blog Jump With Both Feet because I feel like it describes how we have dealt with this adventure. We have jumped in, both feet, entirely. And we will continue to do it. I hope you come back and read this blog from time to time. I am just going to share this adventure. Share Emmett’s story as it continues. His world is a pretty spectacular place to visit.