"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller

Tuesday, July 20, 2010

The sacrifices we have made as parents...and parents of a child with a disability

Forewarning: This post may be a little jumbled as I am using this as a way to sort out my feelings on a few subjects that I really wish others in my life could understand.
When you become a parent, you agree to make adjustments to your life to accomodate the change...you give up things that were previously very important to you because you know this precious baby is far more important than any of that could ever be...you no longer have a 40 hr a week full-time job, you have a 24/7 job...you make financial sacrifices in many different ways...you learn to move the knives to the back of the counter from sticky little hands...to be able to function on only a few hours of sleep some nights...and so on.
We accepted all of these changes! There have been and will continue to be bumps in the road where we wonder what we have gotten ourselves into and wonder how much further our buttons can be pushed before we blow up...but at the end of the day, we both love our life and love our children and would not change the sacrifices we made to bring them into this world and to support them.
When Mike first signed on for the management program with Fareway, we were pregnant with Brycen and knew we both needed to be in "grown-up" jobs. We never expected to be transferred to the other side of the state 11 months later! We sacrificed the home and neighborhood we loved, the friends we left behind, I sacrificed a job I very much enjoyed. When most people move, they have the choice of where they are going, but with this position, we not only do not have the choice, but we have no idea when each move will happen. Mike was in the CF store for 11 months before moving and we have been here for almost 3 yrs & 3 months with no signs of moving anytime soon. It's a little bit of a mind game...and you wonder should I do this or that just in case we are notified of a move next week? I ran across this situation with ordering new checks...what if I waste $30 on a box of checks for the bank here and we get transferred next week (you all know how frugal I am, so losing that $30 to me would be heartbreaking!).
Now, not only are we dealing with our own feelings on this, but we were thrown another obstacle with Brycen's autism and his rigid routine and obvious disregard for changes. We are not letting this change the plan of Mike completing the management program despite the multiple moves ahead of us because we know the end product will be well worth all the turmoil it may bring to Brycen and our sanity.
I never, ever thought I would be a stay-at-home Mom. I went to college for a reason and have been working since I turned 16. Don't get me wrong...I enjoyed my 10 week maternity leave with Brycen, but I was looking forward to adult conversation daily and not constantly be making bottles and changing diapers all day long once I returned to work. Though I do remember a long day of work starting at 7am and not getting home until after Brycen was in bed, and I cried because I realized I did not get to feed him one single bottle or change one diaper all day long and I had missed out on an entire day of those simple bonding moments.
When we moved here, things changed in that aspect. We had no family or friends within hours of us, so I started over in a minimum wage job at the daycare so that I could be close to Brycen and then moved onto in-home daycare, and then to an entry level job in disability services that worked around Mike's schedule. You see, once Brycen started to regress and we were given the dx of Autism, we realized there are very few people that we trust to care for him and keep him safe. The main daycare here in town would not have the funding to care for him adequately or the ability to teach all of the staff about his specialized needs, and the in-home daycares would not be able to keep up with the supervision he needs to keep him and the other kids safe. Typical daycare settings will never be a possibility for Brycen again, so we completely rely on Mallory, a couple close friends as back-ups, and our parents/family to help us out with my work schedule.
I have a flexible job currently that works great most of the time with my family obligations, therapy schedule, and personal life. But we continue to make sacrifices...since I travel so much for work, we do not get back to the Waterloo area to see family as often (it's been since February I believe). We do not have a lot of "couple" time being that sometimes I walk out the door for a mtg as Mike is walking in the door or vice versa. Financially, we have recovered some from the days where I was only making minimum wage after moving here, but finances continue to be a struggle for us (I swear I will be still be paying off my student loans in 20 years!) though it is far better than it was a year and half ago. We work hard for our money and take pride in that we save everything we need for every vacation we take. We know we need to give ourselves and our family a break from the same old-same old, so we save-save-save so that we can do that each year without going into more debt. They are not extravagant vacations by any means like those I sometimes hear and read about from other families we know...but they do the job of giving us a break, giving our kids new opportunities and experiences, and bringing us closer as a family as well as we can feel accomplished in that we were able to do it all in cash on such a limited budget.
I will never go back to work full-time again...and surprisingly, I am happy with that decision now! I don't know if my part-time/work at home job will be available for our next move, but that's ok. We always make things work out and that's a part of the sacrifice. The end product will mean more financially stable, a home of our own that Brycen can thrive in, my availability of time to get Brycen to and from all the therapies and appts he will ever need, as well as being there to watch Aubree grow up and attend all of her school and extracurricular activities without worrying/struggling with scheduling around a job. I've realized over the last year that staying at home does not mean I am giving up on my dream to help those with disabilities, but maybe all of those years of college and experience set the stage for me to be the best Mom possible to Brycen. He and Aubree are my dream...and maybe I am the lucky one in that I get to combine my love of helping people with disabilities with Brycen's autism and being a parent at the same time.

2 comments:

  1. Melissa, this actually made me cry. Not because it is sad, cause its far from that. I look over my life and all the struggle that we have had trying to D a Dx and finally getting it 9 yrs after I first asked the question could he be Austic and getting no awnser. Even though he is in school everyday and we dont have to go to the therapies (but prob should have many years ago), I am struggling with my decision to go back to work. I had done daycare for the last 4 1/2 yrs, and although i loved it, i was beyond burnt out and needed a change. So this fall I am going back to work partime. But here I am wondering if I made the right decision. I wont be making much, barely enough to pay the daycare for my youngest and hopefully buy groceries. As im realizing how tight is has been with no income this summer and how little it will help this fall, I have started looking for a parttime afternoon job. But it floors me how few employers understand that I need to be home in the evening for D and that although im not opposed to working 1 night a week, i cant do much more then that. Its been beyond frustrating to me and sends me back to the did I make the decision for my family. In my heart I know that I have, and I know that i will work out in the end. Thank you for sharing your feelings! And thank you for allowing me to vent a bit about mine! What you have done for your family is wonderful!!!

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  2. Awwww, Jeni! I can't imagine what you have gone through for years knowing there was something going on with him, but not being able to put your finger on it or have the doctors give you guidance.
    I started this blog as a way for me to vent out some feelings and I want others to be able to do the same. Feel free to always vent on here and give me feedback! Many times I read a blog post on Autism Speaks or somewhere and it's like the blogger is in my head, writing exactly how I feel but was never able to put in words.
    Despite the differences in our children's ages and areas on the spectrum, as well as with any other parent out there who has a child with any disability, we all have similar feelings and emotions and we need to rely on each other to get through those bad moments and to share all the good moments!

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Autism and Our Family

"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.

Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!

Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.

We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.

Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.