Lost in a Moment Without Autism

Sometimes I get lost in the moments and forget that Hailey has autism. It is something that I never thought would happen. When she was diagnosed, as strong as I seemed to be about it I was sad and scared for the future. I had to grieve the child I thought I was going to have and adapt life to the situation we were in. I grieved for the friends she wouldn’t have, the vacations we wouldn’t  go on, the songs we wouldn’t sing together and the games we wouldn’t play. I felt like this heavy stone of autism would forever sit on my shoulders and on my heart. A cloud of hard situations and missed opportunities would hang over my head for a lifetime. I thought I would always be aware of the differences.

We are 5 years after the diagnosis and I am so happy to say I was wrong. SO WRONG! Today I realize I did not have to grieve all of those things, I just had to adapt the expectations. Hailey has been to Disneyland, the Santa Cruz Beach Boardwalk, and many of the other places I ventured as a child. We do these things a little differently, we get a special pass to not wait in line (BONUS) and we have to be a little more careful with where we pick to eat, and take more breaks but other than that, we have a blast every time!

Recently her and I took a camping trip together, just the two of us. She was in awe of staying in an air-stream (an adjustment I would have assumed years ago would be hard). We laughed and played and went to the beach and made s’mores. We did everything I would have done with her if she were typically developing. We connected and bonded and made lifetime memories. Nothing about the autism got in the way of it being a joyous experience. When it was just the two of us, I often forget she even had autism, it seemed all she had was fun!

A few weeks prior to the camping trip we attended a classmates Birthday party. Yes, the little girl also has autism and they did not interact much at the party but she was invited and was sooooo excited. I cried when we got the invitation. Another life experience my mind had robbed her of at an earlier stage in the diagnosis. It was amazing to watch her sing Happy Birthday to the little girl with the other kids, to watch her eat cake and laugh when her peers did.

Speaking of singing. Hailey and I sing Happy Birthday probably more times in a day than most people do in a year. She loves to sing, and dance. Our Whitney Houston dance party in the living room is always a hit. We even sing songs she has made up. Her creativity is truly one of a kind. 

This past weekend we were at the pool and she was playing in the water with her dolls and splashing and kicking, just like I would of at her age. Nothing seemed weird, different, overwhelming. I wasn’t at the pool with my autistic daughter, I was just at the pool with my daughter. What a relief!

It is so refreshing to have this new view, five years out. To see that things work out and that adaptations are just a part of life but that doesn’t make the life any less memorable or enjoyable. The moments when I forget about the autism are coming more and more frequently. That is not to say that some situations aren’t still hard. . . . (sooo hard) but they are becoming less and less. My worries fade a little more each day as my heart and our bond grows.

For all those mamas new in the diagnosis stage, I know what I am saying it hard to believe. You can’t see it now but your life will not be consumed by Autism forever. Everyone important in your life will learn to adapt with you and one day you will be in a moment with your child and it will just be that. . . . your child, having fun, just the way they are supposed to be.

Dear Single Parent, I Get You. . .

Dear Single Parent,

I get you. I am there with you. I know how exhausted you are. I know your routine. I could probably step in and live it moment for moment like I had been there all along. The morning rush, drop kids off, off to work, work hard for 8 hours while part of your mind is still on your kids, your drive home thinking about all you have to do once you get there. You need to cook dinner, clean up, be present with your child , keep your patience and temper under control when you are getting stressed, showers, prep for the next day, attend to a pet, do a bedtime routine, get the kids to bed and finally pass out just to do it again the next day. In between if you find a free second you need to schedule doctors and dentist appointments (that you will attend with them alone), school meetings (that you will attend alone), sign them up for extracurricular activities, plan vacations or playdates, pay the bills, figure out HOW To pay the bills on one income, try to stay in contact with important friends even though you can maybe one send a text every once in a while, try to remember who you were and who you are. It is overwhelming. I get you. I am overwhelmed too.

Sometimes it feels like it can’t get done. Sometimes you feel like a superhuman and other days like you aren’t even keeping up with any humans. You feel proud of all you can do on your own, but at the same time so jealous and angry of your friends and people on social media who always share about their spouse and how much help they are blah blah blah.  You feel like you are everything to everyone and yet you feel like you aren’t 100% in anything you do for anyone. I get you. I feel these same emotions.

The stress . . . oh the stress. Sometimes the clock ticks so fast it is like a ticking bomb in your ear. It starts sounding like an anthem “you will never get it all done, you will never get it all done”. The pressure to be successful at work, loving at home, happy at all times, it feels like giant man sitting on your chest. The weight and pressure of him literally hurts. Sometimes you can’t breathe. It is just too much! You want to cry out GET OFF ME! But you would just be screaming at life in general. GET THE FUCK OFF OF ME, LIFE OF MINE! THROW ME A GOD DAMN BONE!! I get you. I hear you. I join you in those cries.

Sometimes when an unexpected emergency comes up and you have to rearrange your preplanned day, week, etc. it feels like you are in a tornado and you cannot hold on to anything. It is a full on panic and you feel your insides shaking with anxiety like an inner earthquake. Yet you have to stay, calm, cool and collected on the outside. I get you. I am shaking and hanging on with you.

When an unexpected financial cost comes up that you didn’t plan for, because as a single parent we have to budget down to every penny, it feels like you are being choked. The air can’t get in or out. It is tightening so quickly, just like your bank account is tightening. You wonder how you will ever get out of this mess. Will you ever catch a breath? Why do you even bother to work as hard as you do? Will you ever get ahead?? I get you. I hear your fears.  I fear them with you.

When you finally get a break from your children and get to have some adult time but you crash out at home alone because you are too exhausted to look nice, or walk out the front door, or put on a brave happy face. You just need to self soothe and sleep. I get you. But then when you do that and in turn feel even lonelier because you do not have much adult interaction besides co-workers or teachers and doctors. I get you. When you wonder how on earth you could EVER find a special someone who will accept what a fast paced shit show your life is. I get you, I wonder it too.

When your child is away and it feels like your right arm has been cut off and you miss them soooo much. You spend time planning how much you will do with them when you see them and how happy and loving you are going to be. You are done losing your temper and being stressed around them…. but then life happens and you feel guilty that it all didn’t work that way. I get you. I feel that guilt daily.

When it has been a REALLY long week and you do get that break from your kids and on the way to pick them up, as much as you love them and they are your whole life, you wish the drive could take just a little longer because you were just starting to feel human again. I get you. I feel that. I drive slowly too.

I don’t have all the answers for us. Shit, I don’t even have some of them. I do have the confidence that we will get through all this, that we are doing the best we can, and that is it so worth it. I know that we will get it all done, we will raise happy healthy children, and we will survive. I know that we will be stronger than many of our counterparts. I know that we can handle much more than most people, even when we don’t want to. I also know that no matter what I am feeling or what you are feeling. Someone else gets it. Just like I do.

To My Daughter Looking Into Her Future

I see you looking in those binoculars every day. So innocently curious about what is ahead. While you are just looking into the immediate future and taking it all in, I want to take a minute to tell you about some things you are sure to see in your future and things I hope you see.

 Looking deep into your future you are going to see some disappointment. Maybe a friendship that doesn’t work out the way you want, an opportunity that passes, some loss and some tears. These things are inventible and happen in every life. I hope you also see the strength that I already see in you, and your ability to overcome any obstacle in your way.  The things you have dealt with in your 6 years so far have made you into a little spitfire and I love that spirit you have. You think everything is possible. I hope you still see that little girl in your future self.

My hopes are that you see soooo much more positive than negative in your future.  I hope you can see all the love that will always surround you. I hope you can see me, your mom, being your biggest cheerleader now and forever. I hope you see acceptance as you enter an adult world that does not work the same as you and sometimes will not understand your difference (you are honest and sincere and literate and the world is not always like this).  I hope you see friends, lots of friends and smiling faces. I hope you see the difference you are making, the awareness you will bring to the autism community.  I hope you see goals accomplished, strides made, and every wonderful wish met. 

In your binoculars you see a little into the near future. In my dreams I see much farther into your future and baby it’s beautiful!