The Good, The Bad, & The Ugly!

When I started this blog a few months ago I did so because I wanted to share our experiences of raising a daughter with autism.  I love sharing about our successes and our blessings. I also love to share our No Filter Friday series as these are the moments that keep us in stitches.  Although I don’t particularly love to share the sorrows and pains of having a child with autism, I think it is absolutely necessary that I do.  I believe in being 100% real with all of you.  My life isn’t perfect and I don’t believe that there is anyone that can make this claim.  I do believe that life is good.  I know that I have been blessed beyond measure with 2 beautiful and sweet daughters, a very loving and supportive family, & a husband who “takes the cake”!  But you know what?  Some days life is hard!  Some days I can’t seem to shake the sadness that hangs over my head like a black cloud.  This past week has been that kind of week for me and I think it is important for me to share with all of you why I think it has been especially tough.

This summer will mark 10 years since Skylar was officially diagnosed with autism and of all the years that have gone by, this year has been the most difficult for me.  I had told Chris this and his question for me was “Why do you think that is?”  And my answer is this:

When Skylar was first diagnosed, I was in complete survival mode.  Not only did I now have a child with autism, but I also had Hailey who was very ill and had just had her g-tube placed.  I threw myself into researching anything and everything I could get my hands on.  I honestly don’t think I had time to be emotional as I was working non-stop to help my girls. The years passed and Skylar made significant progress in many areas and even though she was years behind her peers in life skills and some educational areas I always still saw her as my “little girl”, but this year, she has really started to physically change.  She is no longer a little girl, but a young lady. If she stands on her tip-toes, she can look me straight in the eye.  As she has grown up the gap between her and her typical peers has become more noticeable.  I’ve really tried not to let that get me down. I work so hard at trying to focus on the positive.  I’ve always believed that Skylar will progress at her own rate.  But as I was shopping for Christmas this year it REALLY hit me.

Skylar loves to play with toys well below her age level.  She always has.  I don’t think I noticed it as much when she was 8 and she really liked toys that were for ages 3-5.  I think it was because I was still buying younger toys for Hailey as well as for my younger niece and nephew.  But as I was shopping this year and ordering things for Skylar, the “age appropriate labels” were for that of a 5-6 year old.  When I saw that, it made me tremendously sad.  I know it shouldn’t, but it does.  And when you are checking out of Wal Mart or Target and the nice clerk says “Wow! I bet you’ll have a little one who is thrilled when she opens this!” the sadness is overwhelming.

In working through my sadness this week I have spent a lot of time crying, praying, hoping, and looking forward.

-I have cried knowing that people will make fun of her for playing with toys that are well below her age level.

-I have cried over the bits & pieces of life we have seen our niece experience that we know Skylar probably never will.  We are not bitter that she gets to experience life, in fact it is just the opposite.  We are thrilled that she is experiencing things a typical teenager does.

-I have cried because that is just what a mom does when she hurts.  I can’t explain the hurt to someone who is not a mom.  Chris even says “Honey, I don’t always understand your hurt, because I truly believe that a mom worries and aches for her child like no one else”.

-I have prayed earnestly that the Lord would give me a total peace and understanding as we move into a new part of our journey. Let me tell you, puberty with a child with special needs is a REALLY bumpy road.

-I have prayed that the Lord would soften the hearts of those around us and that they would be completely understanding and accepting of who Skylar is and who He is shaping her to be.

-I have prayed that my family will be understanding that sometimes I am just sad and I just need time to work through it.

-I have prayed that the Lord would use me to tell our story, even the sad parts.

-I have prayed that I will let go of the worries of what other people will think, say, or feel and that I will just enjoy every precious moment I have with my girls.

-I hope that our story will encourage others on their journey.

-I hope that people will know that it is ok to be sad and to tell others about that sadness.

-I hope that if you have a child with special needs that you will know that you are NOT alone.  There is a vast community that wants to come along side of you.

-I hope that if you know someone with a family member with special needs that this might give you a glimpse into their lives.

This week as my family gathers to celebrate Christmas I’m looking forward to a lot!

-I’m looking forward to the joy on Skylar’s face as she opens her gifts, no matter what the “age appropriate” label says.

-I’m looking forward to having a little one here this year.  My niece is 2 1/2 and I can’t wait to see her excitement.

-I’m looking forward to my dad reading ‘Twas the Night Before Christmas’ to all 6 of his grandchildren.

-I’m looking forward to putting together a puzzle with my dad and my sister like we do each year, most likely with the Lord of the Rings trilogy playing in the background.

-I’m actually looking forward to the comments about how we are puzzle nerds from Chris and my bro-in-law Jeff.  They just do NOT find joy in putting a puzzle together.

-I’m looking forward to a house full of laughter and family.

-I’m looking forward to our tradition of seeing a movie on Christmas day.  I believe that this year’s pick is the new Mission Impossible.

And most importantly:

-I’m looking forward to a beautiful Christmas Eve service focusing on our Lord & Savior who came to Earth over 2000 years ago bringing HOPE to a world that needed it desperately!

May the Lord truly bless each & everyone of you!

JuJu

*I was nominated for one of Babble’s Top Autism Spectrum Blogs.  I’m totally honored by this.  If you read my blog and you have found it helpful I would appreciate your vote.  I am currently #19.  You can click here and search for I Am JuJu, then click on the “I Like This” icon.  I believe you can only vote for one blog per computer/device. Thank you so much for your support!  I love sharing our journey with others and I truly hope that it brings hope and understanding regarding Autism.*

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13 thoughts on “The Good, The Bad, & The Ugly!

  1. I’m sorry you are hurting. I’ll try to just listen more. We love, love Skylar just the way she is, but know you want more for her. I don’t know the hurt you are going through, but I can imagine. I’m sorry you are sad. Looking forward to the weekend and seeing Skylar open her gifts, even if it says it’s for a 5 year old. Love you.

  2. Very touching post. We love you guys and Skylar. We look forward to a great weekend with you guys. I especially am looking forward to javing my personal space violated multiple times each day by Skylar. 🙂

    We are here for you.

  3. Sad attacks happen. Anguish happens.
    When I was living in Alaska with my then 14yr old, nonverbal, violent autistic daughter a friend with an autistic son sent me Sound of A Miracle and said that her son received some benefit from the auditory training that brought the subject of the book back into the world. After reading the book I felt extremely agitated (why?) and since I could not sit still, decided to go grocery shopping. It was while I was picking through the egg cartons that I suddenly realized my upset was my daughter would never get such therapy and that at 14 what I had was pretty much what I was going to have for the rest of my life. I burst into tears and with tears streaming down my face paid for the groceries and wiped my eyes as I drove home, and then cried some more.
    But I was partially wrong. Long story short, she got the therapy and she began to understand us for the first time in her life. If I told her the schedule or the plans were going to change ahead of time, she tolerated the change instead of beating me and destroying stuff. So yeah, it helped her too. She did not “recover” but she got a little more comfortable with her life. Some years later we repeated the auditory therapy because some our friends kids advanced again. Our daughter didn’t.
    At age 33, our non-verbal, rarely violent, child likes living in her own home with her same age cousin as companion home provider. She has her tiny little schedule and tiny little life and we no longer try to push her into employment or volunteer work. Sometimes that’s as good as it gets. And sometimes that’s enough.
    But there are the rare days that, like a panic attack, I still have sad attacks for no reason that will last for a few hours. Usually I cannot figure out where they come from. They happen.
    God is still God, and God is good.
    Meanwhile my three sons are the pride of my life, and the adopted daughter with FAE is the bane of my life. It’s a fallen world you want to make all better and you sometimes you can’t.

  4. Julie, I am thinking of you. I know it is easy to say “Who cares what other people think! Ignore them and live your life!”. I won’t say that. I will say that you are a wonderful mother, wife, sister, aunt, daughter, and friend. If you didn’t care so much about what those other people thought, you wouldn’t be you. You know how special Skylar is. So does anyone who actually spends a little time with her and gets to know her, even just a little bit. As I have been watching my girls grow into teenagers, I wish that they would stay young and enjoy the things that they once did. So I think that you are lucky that you get to buy gifts for Skylar that you know she will enjoy and you get to enjoy watching her play with them!
    And by the way, puzzles are cool! Kurt and I like to see if we can get a 1000 piece puzzle done in under 4 hours. And sometimes we do! 😉

  5. “I have prayed that my family will be understanding that sometimes I am just sad and I just need time to work through it.” Keep praying, because the world needs to develop more acceptance of diversity.

  6. Julie your strength is motivational! You’re an amazing woman! I’m sorry your hurting and my prayers are with you. Your children and everyone around you is so very blessed to know you and have you in their lives.

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