Fifty Dollars Can Change Your Life

$50 is how much it cost to get our marriage license 10 years ago. The license that held the legality to all my hopes and dreams. The paper that went along with the promises that we would love each other, support each other and see each other through the hard times. $50 to start the journey of having a home, a family and a bright financial future with someone always by my side. It would cost much more than $50 to get divorce but that is a whole other story.

$50 was the co-pay when I took my daughter to be evaluated by a developmental pediatrician. I knew that she was not progressing as she should and this was the first step to get answers and the help that she needed. When the diagnosis of Autism was given I was not shocked but I was shook. At the time I had no idea how that would shape our lives. The struggles she and I would endure in finding ways for her to cope with sensory issues, social issues, behavioral issues, sleep problems. The triumphs we would celebrate in her learning how to speak in full sentences, being invited to a Birthday party for the first time, moving into a higher level class, eating new foods, and making lasting relationships with family.  It was a $50 well spent but a life changing $50 for sure.

After my divorce, $50 was how much it cost to fill my tank with gas and embark on our adventure moving from the Bay Area which I had called home all my life, to a little suburban town right outside of Sacramento. This town held promises of a better life. A family friendly town with low crime and high spirits. Little did I know at the time that in my new city “family” meant more than just one parent and a child and it would cost a small fortune to even have an apartment on one income. Sometimes I wish I could get that $50 back.  

$50 is the average amount people ask for from me on a semi-regular basis. Grown men who only have to care for themselves (one of which doesn’t even work but has mommy pay all his bills) will come to me, a single mom, and ask for money. Money for them to get cigarettes, money for them to go to a bar etc.  I don’t give them money anymore, instead they get a lecture and the offer that I will take the $50 they need and put it in a fund to save for their early funeral because their lifestyles are so unhealthy! Of course I don’t actually do that because they aren’t worth my $50!

$50 is how short I came up on an application for an apartment for my daughter and I. I make a decent income compared to others in the area, I get a little bit of child support from my daughters paternal grandmother and some additional money for her having Autism. Do we struggle every month? Absolutely. I have to think extra hard and plan where every dollar goes. But we have never gone hungry, and I have never missed or been late with a rent payment. So I applied for this apartment and show all of my income and I am $50 short of making 2.5 times the rent. I offered to go without Starbucks to save $50 a month but the leasing agent didn’t see my humor. I reached out to several city, county and state level council members and not one could offer me any advice. I could go on a political rant here about how other people who are less hard working get more from the Government but I will leave that alone. $50! $50 means they would rather my daughter and I be on the street! $50 means they can tell me that I don’t qualify to live there and give me an attitude that I am not good enough. This is the most frustrating $50 out of them all.

I really never gave much thought to an amount of money under a thousand dollars possibly changing your life. I am now here to tell you that just $50 can make all the difference in the world!

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.

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!

Lucky to be a Special Needs Parent

I wrote this a few years ago and while my daughter has made progress in some of these areas, they are replaced by others now because as special needs parents we know it is an ongoing roller coaster. . . . .

As a special needs parent I admit that I often feel sorry for both myself and my daughter.

I feel sorry for myself when I am up with her for hours in the night because she can’t regulate herself enough to sleep. I feel sorry for myself when I have to sing 15 different songs just to get her attention for a split second so I can take a picture that  you can see her gorgeous blue eyes in.  When she melts down worse than other kids her age and I can’t explain things to her like “Its ok we will be back at the park tomorrow.” I feel bad when I have to fight the school district during IEP meetings to get services that are detrimental to my daughter’s development and I have to be the bad cop against professionals. The looks I get at the park from other moms when my daughter runs around flapping her hands and babbling like a baby or paces the fence back and forth, or I have to tell her not to lick the slide, I feel bad for myself then.  When I feel that I can’t connect with her everyday like I would like in pretend play or games, it hurts. When I think about the future and the things that we as mother and daughter probably won’t experience such as getting a drivers license, going to proms, her wedding or having children of her own and I often cry and worry what she will do in this big scary world when I am not around to navigate it for her.

  I feel bad for my daughter when another little girl comes up to her to innocently talk about the kitty on her shirt but to my Hailey it feels as if she is coming in for the attack. I feel bad when I can’t let go of her hand at an unfenced pumpkin patch because she will wander and not listen when I call her name like other children. I feel bad for her that the world seems so scary and uncertain and that the sun is harshly bright for her. I feel bad that she has thoughts trapped in her head that she just can’t get out and brilliant ideas of her own that will never be heard. When she seems hungry but she refuses to eat anything that is not crunchy and salty or baby food.  I feel bad for her when I drop her off in a new class and can’t explain to her that she is safe and that mommy will be back. Instead she spends 2 ½ hours feeling alone and scared.

Life as an Autistic child and as the parent of one are probably some of the hardest things to be dealt in life. The lack of awareness and support is another heart breaking reality.

At the end of the day when I watch her sleep so innocently I feel blessed. When her world finally makes sense, when we have survived whatever came her way that day and handled it as a team.. . . It is then that I finally relax and realize the people I should really feel bad for are the parents of typical developing kids (I know sounds crazy). While their day to day lives might be easier (which they will hate me saying, but hey its true), they also will never get to experience the things I do. The depth of my love and understanding and purpose for being on this earth I believe is much stronger than if I had a typically developing child. Of course all parents are close to their children. But the closeness that a truly intune mom has with her special needs child is like no other. I know her inside and out. Her needs and wants that she can’t even express.

And the little things she does that seem like HUGE things. I don’t have to wait for a report card with straight A’s or a baseball trophy to feel like I am on top of the world and the proudest parent alive. I get to see huge amazing accomplishments in her every day because ,life, in general, doesn’t come easy for her. When she can communicate a need for the first time or when she makes eye contact or says hello to a stranger. When she plays next to another child without fear, or tries to sing along to a song. When she laughs and finds joy in a new song or activity that before was hard for her. There is something we get to celebrate everyday because she is adapting to living in a world that is not like the world in her head. She is amazing and adaptable. She is my hero and I got to give birth to her.  How lucky am I?