It Is Hard

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Written by Alisa Hutton

Some days are hard. Really hard. Sometimes those hard days layer one on top of the other and become hard weeks and then hard months. Eventually you feel like you can’t remember when it didn’t feel hard. The moments when the screaming and the crying don’t seem to stop. You sit in silence knowing you have to be calm and patient and you just wish you could have a small break from it all. Just to feel a little bit of peace but you can’t and you won’t get that break.  You wish for nothing more than to understand what is going on for your child so you can help fix it. You question yourself as a parent. What type of parent am I if I can’t fix this? So you do what you know best. You love them and you wait. You wait and you hope you figure it out or it simply stops. You feel guilty because you know it is more difficult for them and you feel selfish that you are thinking about yourself. It is hard.

When you tell people your child has autism they often say “that must be hard”. You have so many responses you want to say in your head. Sometimes you want to cry. Sometimes you want to scream at the top of your lungs how hard it is so someone gets it. You want to feel like on those sometimes hard days you are not alone in it. You want to say it is hard, please help us. We need more support and I am tired, so tired. Sometimes you are just too tired to explain it and you just smile and say it is OK. It is hard.

Isolation. The isolation is brutal. Some days though you wonder if maybe it is necessary because if you are surrounded by people who don’t get it then the isolation is worse. It then becomes loneliness. There is nothing worse than being surrounded by people who don’t get it.  Lonely feels horrible. You feel invisible. Sometimes you feel like maybe it is just better to be alone. Maybe you were just meant to spend a lot of time by yourself. You know this probably isn’t true but you think it because you tired. Maybe you are a better parent if your are isolated. You are able to focus your energy where you need to. It is hard.

Worry. Sometimes you wake up gasping for air in the middle of the night with worry.  The questions that tap on your subconscious when you should be resting. When you so desperately want to be resting. You are exhausted, you need rest. What will happen to them when you are gone? Are they happy? Who is going to love them if I get sick? My god I can’t get sick. I need to take better care of myself but how, when? Will I have enough money to support their therapies this year? Work. I can’t take any more time off work. God, what if I lose my job? Then what? Will they ever have friends or a job? Where will they live when they are adults? Will I be able to support them or will I have to let that go and allow someone else to take over? Worry. It doesn’t stop. It is hard.

Stress. The stress swallows you. We know what it is doing to our body and it feels like some days there isn’t anything else we can do except pray that our stubbornness to not get sick saves our bodies from falling apart before we are ready. Your chest hurts all the time, you ignore it for the most part and hope that maybe if you take a few minutes it will hurt less. You stop looking in the mirror because seeing how quickly you are aging and how tired you look is just a reminder that you need rest and help. You aren’t going to get either. You joke about your body being a science experiment to see how long you can go at this level. You laugh but you don’t really think it is funny. It scares you because you know it is a matter of time before your stress manifest in to sickness. You can’t get sick. It is hard.

We go to bed with only one thing every night. Hope.

People say it must be hard.

It is.

Stress Much?

stress

Written by Alisa Hutton

We know that having a child with autism comes with a great deal of worry and stress that most parents of neuro-typical children do not experience. It isn’t bad it is just different. The reality is that our bodies deal with much higher cortisol levels on a daily basis. So what does this mean for us physically?

Cortisol affects our overall health. If we are producing too much cortisol or too frequently it can wreak havoc on our bodies. Which is why as parents of children with autism, knowing that we typically produce a lot of cortisol to combat stress we need to be extraordinarily aware of our bodies and taking care of our health.

I went many years running on adrenaline. High stress, lack of sleep, lack of exercise, poor eating, and the list goes on. I didn’t know any other way to manage and I felt my youth would protect me from any ill effects of burning the candle at both ends. I was “surviving”. I was incredibly wrong in my assumptions and my health suffered because of it.

In the world we live in and the very real stresses of parenting a child with autism we need to be keenly aware of managing our cortisol levels. We need to become experts in managing stress. The kicker is, parenting a child with autism also means you probably are not able to combat stress in the usual ways that parents of neuro-typical kids do/can. So what do you do?

One of the first areas I focus on when I do 1:1 coaching with Moms is what I call the Basi formula. Basi was the young son of a Mom I worked with. He was wise beyond his years. His family was struggling and caught on a treadmill of survival. He looked at me during one of my sessions with his Mom and asked “how can we look to the future if we are always worried about surviving”. Little Basi was bang on the money. We can’t look to the future, have hope and thrive if we are only ever surviving.

It was during my work with Basi and his family that I created the Basi formula. It is where I now start when coaching Mom’s. We start with how they are surviving and we work our way up and out of surviving to future, hope and thriving. It isn’t a complicated process or one that is draining. It is simply looking at where things are at and designing a plan to work towards a place that feels better, authentic and in meaningful ways. This simple exercise focuses on what we already know. We know cortisol levels are high in Moms of kids with autism. We reduce those by creating a solid plan that reflects what is realistic and actually works for each individual. There isn’t cookie cutter solutions. We are all different and our kids are all different. So why would we use solutions that were made for other people’s lives?

I encourage you to learn about cortisol levels and the effects they have on our bodies, Mom’s especially. As science has told us you are typically the most impacted by this. Take some time and think about what little tricks you have in your tool belt that help you reduce stress in healthy ways. Be mindful of those and see if you can carve in a little extra time in the day for them. As I said there isn’t a cookie cutter solution but your health is important and your kids need you to be healthy and happy. It is a marathon not a race. Pace yourself for the long run. You are important.

 

For more information on coaching or workshops please contact me directly alisahutton@gmail.com

Invisible

April 2

Written by Alisa Hutton

I remember the first time I truly felt it. Invisible. My son had just started pre-school and they were hosting a Halloween party. I was so excited to be a part of his new school adventures. Having a little guy on the spectrum we so rarely experienced any of the “normal” things. We didn’t get birthday invitations, we didn’t meet other families at the park, we didn’t get asked over for play dates. It was a hard part of the reality of having a child with autism. If was lonely. It made me sad for him.

The neighborhood I lived in was primarily stay at home Mom’s. I work. The kids in my son’s class were all neuro-typical. He has autism. All the little kids loved wearing costumes. He hated to wear them. The Mom’s all had beautiful long blonde hair. Mine was short and brown. All the kids chatted and laughed non-stop. Mine doesn’t use words, he is non-verbal. All these things really didn’t matter to me until I realized we were invisible. Why? We were different.

I had a dreamy little notion that I would come to his pre-school that day and we would be welcomed, included and me and my little guy would be a part of this community, our community.

Bless my little ball of sensory swirling. He was pissed right off that I had put him in a costume and he let everyone know it. He was too hot, so the costume came off in quick fashion. Someone had brought cupcakes. Oh my god not cupcakes. He is obsessed with cupcakes, loves them. It is actually the only word he says “cuuuuuupcake”. He was like a heat seeking cupcake missile. Would. Not. Stop. Tasmanian devil best describes his behaviour that day. Was he difficult to handle? Totally. Was I handling it just fine? Totally. I have a child with autism this is par for the course for me. I handle it. NO. BIG. DEAL. He has autism. He has huge sensory issues. He was 3, give the kid a break. For Pete’s sake, give me a break.

I looked over to this row of perfectly perched Mom’s. All of them looking and whispering. Looking at my son with that “what is wrong with him?” look. Looking at me with that “can’t you control him?” look. Just staring. Just whispering. I had never seen anything so blatant. So I warmly smiled at them. You know, to let them know I could ACTUALLY see them but they didn’t see me and they didn’t see my son. We were invisible.

I wish this wasn’t part of the memory of my first event at my son’s school. I wish people could take classes on not what to do in situations like this. I wish the world knew to smile and find empathy and compassion because we aren’t all the same and staring and whispering truly is never helpful, ever.

It made me sad that people could behave in a way that leads to feelings of invisibility. Especially when you are dealing with a demographic that already struggles so much with isolation.

Near the end of the party one Mom did see me. She broke away from the group and introduced herself. She smiled and she was warm. She came to tell me how much her daughter liked Noah and that she always said how funny he was. It just took one person. One act of kindness. One moment. She gave me and my son visibility. We belonged. It was huge.

Invisibility and having a child with autism can feel so hard but I don’t get upset or sad about it any longer. I am grateful for what it has taught me. It truly is a gift to understand the value of seeing people. What an honor it is to offer warmth to someone. To know that one simple act of kindness can make such a difference in a person’s life.

My son doesn’t use words but he sure teaches me a lot. I wouldn’t trade that heat seeking cupcake missile boy for anything. I think he is kind of awesome, Tasmanian behavior and all.

Surrender

floating

Written by Alisa Hutton

sur·ren·der

cease resistance to an enemy or opponent and submit to their authority

The word surrender is a curious one. I think often we associate words with its literal meaning and the context in which we hear it most. In the case of surrender we would often associate it to giving up. A negative term, rather than postive.

As I have walked through my journey of raising my son with Autism it has taken on a different meaning for me, one that comes with a great deal of appreciation.

I recall when my son was diagnosed with Autism and I was hit with what I would refer to as immense grieving. It was a feeling that came with so much guilt and confusion. Here I had this wonderful little boy who I loved beyond anything else yet I felt this intense sadness when he was diagnosed with Autism. I felt ashamed and embarrassed that I felt this way. So I said nothing.

Over time I realized this sadness I felt was indeed grieving and it was very real. When we have children we imagine what that will look like. All the stages glittered with emotional moments and milestones. We have expectations, dreams if you will. Society doesn’t really prepare us to imagine otherwise. So when life gives you a differently wrapped gift, then what? We grieve.

I fought the grief for a long time and kept it in my deepest places of my heart. It festered in me like a petri dish of sadness. One day, I speaking with a fellow Mom who also had a little guy with autism and I couldn’t keep it in any longer, I spoke my truth. I told her I how sad I was and why and I didn’t know what to do with it. A funny thing happened, she let out a big sigh and stated “me too”. We both cried and talked and listened. We gave our deepest feelings light and they started to feel no quite as bad.

Over time I met more Moms and I asked if they felt the same as we did and you know what? We all did! We had all been walking around with the same feelings, quietly suffering. All it took for us to lessen this was to find our courage and speak our truth. All of a sudden it became not so bad and started to heal.

Many years later I own this sense of grieving I felt and sometimes still do feel it. I know it is normal and healthy and we don’t need to feel ashamed or hide it.

I was speaking with my partner yesterday about the word surrender. I realized what an important word this has been for me in my journey with Autism. I envisioned when I was a little girl learning how to float. Floating is such a peaceful experience but in order to do it you have to trust your body and the water, how they will work together. You have to relax and just breathe. You have to surrender.

Autism is a journey that is evolving and beautiful. It will stretch you mentally and emotionally in ways that you didn’t even know possible. It will allow you to see and experience love in ways that are such a gift but there is one key to it all. You have to relax and just breathe. You have to surrender. It is a beautiful word and experience. To me, having a child with Autism has been similar to learning how to float. It takes a lot of courage and trust but once you get there it sure is a beautiful feeling.

Sorry Your Kid Is Typical

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Written by: Alisa Hutton

Sorry your kid is typical

I am so sorry your child does not have special needs, I really am. I am sorry they are typical, it must be hard, and I don’t know how you do it. They say God doesn’t give you more than you can handle, he must have known you could handle a non-special needs child. I think of all the typical kids; all the talking they do, the sports and homework, it is a lot. You must be a very special person.

I don’t want to be rude but us parents of kids with special needs, we always feel bad for you. We don’t really ever discuss it, except with each other. We don’t want to be judgmental or sound harsh. I mean who wants to be the person to say “I am sorry your kids might not fulfill your dreams” or “I am sorry your kids might get divorced one day”.

I always have so many questions to ask but never do. Do you think your kids will get divorced? I wonder what their sexual orientation will be? I wonder if they will work one day or be lazy? I wonder if they will get fired and live in your basement? Do you think they will be successful and accomplished or just average? It is a lot of pressure to think about it, I am not sure how you do it.

Us parents of kids with special needs always feel bad for people with typical kids. I mean, we have kids that are special and unique, yours are just, you know….typical. Our kids see things that typical kids don’t. I am sorry you kid is typical.

My son is non-verbal. People always seem so concerned and upset about this. I don’t totally get it? I feel really fortunate, he taught me how to watch and listen. He taught me how to follow my instincts and heart. He taught me this because that is how he communicates and lives in the world. I feel bad for parents that don’t have this. I am sorry.

My friend’s daughter who doesn’t walk, people always act all pitiful for her, give her sad looks when she is out in public. Her daughter though, she taught her how to be still, how to calm her body and appreciate where she is. It is pretty awesome. I feel bad for parents that don’t have this. I am sorry.

Our kids they taught us about judgment, kindness, acceptance and love. They teach us about this every day. I feel bad for parents that don’t have this. I am sorry.

These kids with special needs, they have really good instincts, like freakish superhero good instincts. They let us know right away in their way who is good and kind and who is not. I know right, so awesome. Kids with special needs can sift out all the crappy people from your life, without the crappy people even knowing they are being observed. Crappy people usually don’t notice our kids. It is a little secret that all of us parents of kids with special needs keep on the down low. Our kids are, our greatest instinct. I feel bad for parents that don’t have this. I am sorry.

Since I am being open here I should also let you in on something else we feel bad about. Us parents of kids with special needs, we have a fantastic community. You know when you go to a party and there is that one person that you think is really amazing. This community of parents, they are all like this. We have a group and when we get together it is amazing and real and full of laughter, love and non-judgement. It is like the best kitchen party you have ever attended. I feel bad for parents that don’t have this. I am sorry.

On the upside of it all, we will never judge you and we will never judge your kids. We will accept you. Our kids taught us that. It is important for them, so we respect this.

I guess I just wanted to say I am sorry. I am sorry you don’t have a kid with special needs because it is really awesome. We try not to brag about all the blessings and richness it has brought to our lives. We often allow you to view us with pity because we know that you don’t really get it. You weren’t given the same gifts that we were. Your journey is different from ours and that is OK.  We won’t judge you, we accept you.

Once in a while though I feel like I should say how grateful I am. Really I must have done something right in my past life to be given the special and unique child that I was. A child who has taught me so much about life and led me to this incredible place of authenticity. Our kids with special needs are seriously awesome. I do feel sorry for parents who don’t have this. I am sorry your kid is typical. It must suck that they aren’t special.

I also am sorry if what I just wrote made you feel uncomfortable, maybe upset you a little or felt offensive but it was meant to. It was meant to evoke emotions, make you think, even possibly push a button. What I wrote was what parents of kids with special needs are often inundated with.

I think what most of us would like you know is that we don’t view our kids and their needs as a hardship or something that needs to be mourned or given pity. We don’t feel our lives didn’t work out or we were dealt a bad hand. We are proud of our kids, really proud. We love them just as they are and feel blessed and grateful for them. I hope for my kids and your kids that we can nurture and grow a world that we one day see the beauty in difference, even celebrate it.

If it makes a difference, I want you to know I don’t actually think your kid is typical. I actually think when we are talking about humans the word typical is ridiculous. I think they are ALL special and unique. If they grow up and get divorced and live in your basement that it is totally OK.

Even better, tell you what you can come to my non-typical kitchen party and we will celebrate that we have perfectly imperfect lives. We can be real, honest, accepting and laugh until our faces hurt. It is always a good party.

 

All Yours

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My business card says very little. It has my name, contact information and one statement “all yours”. It is unusual and often perplexes those who are not familiar with the dynamic of raising a child with autism or what I do and why. I chose this statement on my card very purposefully. It is there to start conversation, real conversation.

My education is rooted in working with families and children. My career for many years kept me on a focused path of working with children in crisis. As part of my role I would sit in meetings with teams of professionals representing every aspect of a child’s support trying to “fix”. As I would listen to parents (most often Moms) I would see the incredible stress, worry and pure exhaustion on their faces. I would listen as every professional at the table would pipe up with their quick solutions on how we would “fix” particular issues. What always struck me was how the needs of the Mom and what she required to be fully supported to support her child never seemed to be put on the table. It felt to me as though she was invisible in many ways. Quite honestly it made me sad. It was curious to me as to how we could truly help a child thrive when we are not fully supporting every member of a family? Was this really an effective model of community and support if we were not honoring the captain of the ship so to speak?

I gave birth to my son, Noah in 2008. I knew pretty much from the moment he arrived that he had severe sensory issues and most likely autism. By 2010 he was formally diagnosed and so my journey began. No longer as a professional in the autism community but now as a mother. I realized very quickly and often harshly what my new role was going to look like. All those times that I sat in meetings and thought to myself “are we supporting this Mom?” was now answered clearly. No.

In 2014 I started to ponder my professional role reflective of my own experiences. I loved working with kids directly and with their families. I adored it and it has always been an honor BUT something wasn’t right for me in my heart. I was almost 20 years in to my profession, I was 6 years in to parenting a child with autism and I knew there was something missing. What was missing was support for Mom. Support for me and every other Mom that I worked with. Why was this? How could I change this?

Moms of kids with autism are hands down some of the most dynamic, strong, compassionate and all around amazing women I have every come across. However, there is this other side of that exist to their reality. They are isolated, exhausted and often unnoticed.  Community is often not holding them up for their incredible strength and the importance of their role. Our support structures often do not honor them so they can thrive as they should. It is frustrating and simply wrong.

So how do we change this? How could I help change this knowing what I know and with the experience I have? We change this by nurturing Moms. By seeing them and holding them up and cherishing them because damn it they are worth it! We make one another strong, we breathe life and support and in to one another because we understand each other and we build more strength and energy that way. We honor ourselves and our stories. We can’t thrive if we are not filled, honored and loved. Moms must feel this. For our kids to thrive it is imperative. We take care of ourselves and tap in to our incredible nature that already exist in each of us. THIS is how we change this.

This is why I moved in to coaching and working directly with Moms. I see me and I see you. I see our children and the importance and value they offer and our job of advocating and supporting that is crucial. I see the beautiful and I see the brutal and honor them both. We are important and our job is important. No more wasting time, money and energy on people and places that will not honor us and in turn our children. If we want the world to see how important our kids are and honor them, it starts with us. No apologies.

So, my business card reading “all yours” if for my autism Moms. I know how tirelessly you work and believe in your kids. I know the importance of that. I also know in order for you to do your job you need a person, too. Just like I needed someone. I choose to coach and support Moms of kids with autism so you can be the best you. You need to thrive because you have an incredibly important role raising a magnificent human. You say every day to your kids I am “all yours”. You need someone who also says to you I am “all yours”.

I love when I give my business card to someone who doesn’t have a lot of (or any) exposure to the autism community and they ask why it says “all yours”. Mama’s I see you and I am singing your praises. When people ask why “all yours” I let them know autism Mama’s are super heroes and to make note because I am going to help them roar!

Keep at it A-team, you are doing great and together we are going to do some amazing things. I know it.

Alisa xo.

Dear Autism Mama,

Dear Autism Mama,

I wanted to write you a little note, maybe it is more of a love letter. Between all the sleepless nights, the therapy appointments and the day-to-day worries I think you probably need a little love. I just wanted to let you know I see you. I haven’t forgotten about you. I see how incredibly hard you work and the worry in your eyes. I see all the things that weight your heart that you just don’t speak about because you are strong and you know you need to keep moving forward with courage because if you don’t, who will? I want you to know I see how soft and fragile you are. I see how tender your heart is. I see this in your eyes, too. When you smile and laugh I see the rest you have been needing for so long. Smiling and laughter is like a deep breath. I see your eyes fill back up with spirit.

I want you to know I love you. I really do. I think you are courageous and beautiful and the gift you have been given, the gift of being the Mom of a child with Autism is because the universe just knew you were built of some kind of special. I think the universe knew that you are filled with the perfect mix of magic, bravery, love and strength. I know the hard days can feel like they are swallowing you whole. I know that sometimes you would do anything to have a break from it all. Just a little less weight.

I wish I could fix it all. I wish I could make it easy forever. I respect you too much to make those promises. You and I both know there is going to be brutal days and there is going to be beautiful days. You and I also know hidden in every day is magnificence. I see you and I know you see it and feel it, too.

What can I promise? I promise to love you. I can love hard I am good at this. I can tell you how incredibly proud I am of you. I can tell you that I will protect you and hold you up high with regard for all you do and all you are. You are amazing, I hope you see and feel this.  I can see you. I can smile with you. I can make you laugh. I can sit with you when you need me to. I can be with you when you just need to be messy. I can be serious and silly with you. You are beautiful, perfect and loved. You are magic and all things that make this world beautiful and worthwhile.

When the stars are shining I want you to look up. Look around and find the star that catches your eye. The one that seems to twinkle a little brighter than the rest. This is your star, your reflection. I hope it reminds you that the universe chose you because your heart is filled with a little extra magic and love. You are special.

 

Love,

Me