Wednesday, March 6, 2013

Everything changed

Today I feel like everything changed for our family...and yet nothing is different.  



We have been blessed with a son who is our teacher--he teaches us patience, parental wrestling, to have cat-like-reflexes in order to protect our other children, ultimate child-proofing methods, to tolerate the worst poop disasters known to man, and a variety of other skills which have been painful to learn, quite literally as we have endured bumps and bruises at his hand (and foot...and fingernails...and noggin). However, he has also taught us some of the most important lessons in life--to love unconditionally, to refrain from judging, to look for the best in others, and (most importantly) to rejoice in the small victories. Thus, I decided it was time to start a blog--to give myself the extra motivation to look for the small victories (because we find what we are looking for) and a way to track them so I recognize the big, though sometimes gradual, miracles we are blessed to experience. So here we are.  

Now, this is a REALLY hard post for me to write because it requires total vulnerability and I crave control. Todd and I have been working for several years with doctors, specialists, therapists, and educators in an attempt to better understand our son, Matthew (who turns 5 in May). At about 15 months, we started to recognize some developmental delays and, as he got older, these delays became more and more apparent. At about 3 1/2, Matthew was diagnosed with Global Developmental delays, Sensory Processing Disorder (SPD), and, at almost 4, with developmental apraxia (a motor delay related to speech ). He has made only minor improvements in speech over the years, making his delay more pronounced as he gets older. In recent months, however, we have discovered some new therapies (REACH Family Institute), natural interventions (Dr. John Green), a fabulous new therapist (Building Bridges) and things feel like they have started rolling. We have been very encouraged and celebrating the series of small victories we have witnessed.  


As of late, however, we have been meeting with a new developmental pediatrician and, after several eval appointments, we sat with her earlier today for the "big reveal."  I was bracing myself, knowing in my heart exactly what she was going to say, but I was apparently still ill-prepared, evidenced by the fact that I am sitting in front of a computer while the whole house is asleep bawling my eyes out.  I've been praying my guts out for the last little while, but still can't quite seem to get a grip.  I feel like I lost something today.  


So, Matthew has ASD--Autism Spectrum Disorder.  It's a label that I have dreaded.  I have taken such hope in the fact that no clinician to date has felt to even dig into the possibility that he is autistic.  But this new lady, Dr. Alderman, specializes in this stuff and declared that he "passed with flying colors" (or failed with flying colors, depending on how you choose to look at it), meaning that he met most of the criteria for an ASD kiddo.  


Here is why I am struggling...this is supposedly a permanent diagnosis.  I can't talk myself logically out of the fact that Matthew will always struggle anymore.  Spiritually, I have not given up on the reassurances I have received about Matthew's future, but they are feeling a bit dulled at this particular moment. Also, this is a social disorder.  I am so sad to think of my sweet boy being the butt of people's ignorant jokes, being the kid that no one chooses as their friend because they don't "get" him, being someone that we always want to protect in public so that he doesn't do something inappropriate, being the boy who teachers struggle to relate to or have in class.  I want him to be loved....more than anything in this world.  I want people to love him like I do and see in him the beautiful spirit that is so clearly visible to me.  I don't want people to be blinded to those things because they can't see past his label.

Ironically, for the past two weeks, I have been studying about the idea that what we choose to focus on influences our behavior--in particular that we need to focus on the best in ourselves and others so that we, both consciously and unconsciously, treat ourselves and others as our Savior would.  As I was speaking to a group of young women the other day, I realized that, even though we had yet to meet with Dr. A, I had been practicing this idea all week with Matthew, knowing that she was likely going to give him a label I dreaded.  I caught myself watching his behaviors for signs that he was or wasn't autistic.  I also felt myself starting to see him through the lens of that label.  I think, in part, I was trying to wrap my head around the possibility.  However, I realized that I quickly started to let that overshadow the miracles we have seen as of late and almost dull the beauty of those things because I was dwelling on this dumb label.  I consciously made an effort to rejoice in every little thing Matthew did that was positive and push out thoughts of autism.  I think I did a good job and just felt so close to him and more patient than usual on a couple of tougher (behavior wise) days.  

Then last night, I spoke to a different group and the topic took a new direction--I focused on the power of self-talk.  I realize as I sit here tonight that I feel totally ill-prepared to raise a son with autism...and I'm beating myself up for it (negative self-talk).  The key point is that we have to actually replace the negative self-talk with positive rather than just pushing it out of our minds.  So I'm trying to remember that I have been RAISING a son with autism (and not totally sucking at it)--he isn't a different kid just because he now has a new label!  But I'm still feeling sorely lacking in the emotional strength department as I think more and more about his future.  I'm trying to re-wrap my head around the idea that what I focus on will influence my behavior and therefore influence who I (and Matthew) have the potential to become.  That talk--this topic--took on a whole new life for me tonight and, what I easily gave verbal testimony to yesterday and the day before, I'm really struggling to put into practice tonight.

But let me tell you what I know. I know that Matthew is a child of our Heavenly Father and he was given to us on purpose.  We were prepared for him and he for us.  Matt, who he is named after (Todd's amazing brother who has Down Syndrome), knew it.  We knew it (even though we didn't want to admit it) even before Matthew was born.  Sad to say, I had an impression and was scared even then--we almost didn't name him Matt because I was afraid it would become a self-fulfilling prophecy. Instead, it has become a gift and a comfort--glad we didn't listen to my fear.  

I also know that Matthew has been making INCREDIBLE strides over the last several weeks, as I mentioned earlier.  He is starting to say more words, his communicative intent is improving, his connection to us and others has blossomed, and he is just showing signs of being the bright kid we know he is.  None of that changes.  

Lastly, I know that Heavenly Father will make us (that includes me) equal to the task.  He will not let us fail.  He didn't send Matthew to us so we could mess it up.  He sent him to us because He knew we would help him reach his potential.  

I know all of this, but I am mourning a bit.  Give me 24 hours and a good night's rest and I'll be less weepy, I'm sure.  But I am grieving that we live in a world where labels have such power and that Matthew will change in the eyes of others because of this label.  I haven't talked to anyone about it today because I don't want them to know.  I almost want it to be a secret so that people don't see him differently.  However, as Todd said earlier when we heard the not-shocking news, it's great that we have something we can now be advocates for.  He has a better attitude than me.  I still just want to hug Matthew and cry. 


So there it is. My prayer is that, through this blog, I will be able to hold myself accountable for seeing Matthew for his potential and not through the lens of this label. The greatest gift we can give our children is to communicate their worth and potential so clearly they are inspired to see it in themselves (thank you SRC). That is the best gift I can give any of my kids....but especially my Matthew.




23 comments:

  1. Julie, I love your words. Matthew is truly blessed to have a mother like you. These trials help mold us into the person our Heavenly Father wants us to be and have empathy for those that are struggling also. Matthew came to this earth for a purpose. One purpose is so that we can learn to love more fully. We love and admire your family!! You are such an inspiration to many.

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  2. Julie, wow! As I read, I found myself completely in your shoes, and I would feel the very same way. Funny, when it got to the part where you were feeling overwhelmed with the thought of raising Matthew as 'autistic' - I was saying to myself "Honey, you already HAVE been!". There's no better mom than you to take a challenge like this head on. Look at all the progress you've made already! Look at all the research you've done, help and resources you've found. I will repeat it again and again, YOU ARE AMAZING!!!
    And as bad as it sounds at first, having a label will open up new help and resources for you and your family.

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  3. I love you lots!! You are an incredible mother and how extremely blessed/fulfilling Matthew's life will be for choosing your family. I currently work with special needs students and some have autism. They couldn't walk or be social when they were little, but as their parents worked with them, they have blossomed independently and are honestly my FAVORITE students ever. With you and Todd working so quickly and closely with Matthew, who knows, perhaps he could end up being someone like Temple Grandin! (Who could not be who she is today without her Mother.) There are so many people praying for your little family.

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  4. I can think of no one better equipped to raise and love and nurture this Gift from God that you named Matthew. And I'm so happy that the world has been given another thoughtful and loving advocate for anyone raising a child with differences. - Dr. Covey and the good Lord have given you great tools and wisdom and love and kindness and you will be a great steward of those gifts. You were chosen for this role my friend, with careful thought and consideration because He knew you'd do it better than most. I'm in your fan club front and center and if you need someone to pick up the phone and cry with, I'm available for that too. Xoxox

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  5. What a wonderful post Julie, I admire you for choosing to look at the blessings of your beautiful son rather than the self doubt. We raise money every year for walk for autism in honor of my cousin who is 14. He is also someone wonderful, with friends and family who love him dearly and see everything that is good about him. And you are right, he came to you on purpose because he knew you were the right mother for him. You amaze me!
    Rachel Keller

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  6. I have great hope for Matthew because you and Todd and amazing individuals and parents. I hope you have a wonderful day today, filled with love and support from the many people who love your family!

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  7. Julie, thank you for having the courage to let go and share your story publicly. There are so many families out there who struggle and feel as you do. Your blog, with its tiny miracles and real emotions, will be a strength and a great resource for others who are just starting out on the path you are climbing. I know I have been lifted. Becky Anderson

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  8. Maybe I am delusional but I think people's reactions to those labels are changing. Granted it is a very slow change and every place is different. I personally am meeting more and more parents with children who have ASD and I see so much love and support being given to them. I am sure you will be strengthened and will be included in so many prayers that you aren't even aware of. You are an amazing mom and I know your Heavenly Father loves you very much!

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  9. What a courageous post, filled with lots of amazing thoughts...yet I am so grateful for your honesty, Julie. There is no doubt you and Todd are very special people with gobs of talents and abilities, but your candor (although I know it was difficult) is truly inspiring. Matthew is very lucky and blessed to have you both as his parents, and I know that you are both just as lucky to have him! Lots of prayers and thoughts as you guys continue on this journey...

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  10. I don't know you but you sound like a wonderful mother. Relying on the Lord and being so proactive about yur child's care is a wonderful gift that you are giving him and because of it you will all be blessed and strengthened. It doesn't mean that it will make it all go away but you will learn and see these experiences in ways that no one else can. Matthew is one lucky boy! You are one courageous mother!! Keep up the good work!

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  11. I have no doubt in my mind that Matthew is in good hands. What a blessing it is for Matthew to have such a wonderful family who will love him unconditionally no matter what. We love him and we don't even know him. It makes me think of the scripture in Jeremiah 29:11. The lord has a plan for Matthew, and he has the best people to help him reach his potential. Never judge a book by its cover or you will miss all the good stuff inside. I think you're an amazing person Julie. I admire your strength and character. If anybody can do this journey.....its YOU. Our thoughts and prayers will be with you always. Love you Julie.

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  12. Julie, THank you for sharing your thoughts and feelings. You are starting your advocacy by being so honest about what is going on, you are helping people like me, who do not know much about Autism, to learn about it and become more understanding and accepting.
    Your thoughts on focusing on the positive and the behaviors you want to see made me think of a book I just read that I think you will TRULY benefit from. It is called "Remembering Wholeness" by Carol Tuttle. When ever you have a second check it out, I think you will find some nuggets in there. you and Todd are amazing! Your whole life has prepared you for the role of Motherhood. You are more than capable!

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  13. And because you and Todd are advocates for Matthew, HE WILL HAVE COUNTLESS people who love him! You are the ones who can do what he can't for himself right now. You can find teachers, therapists, friends and family who will all learn through you what it means to love your sweet boy unconditionally. It took me a long time to figure that out and I still have mourning moments for my Kimbal, but we won't mourn forever. Joys come more quickly when you look for them, work for them and live in them! Even when it's been a bad fit throwing day, it wasn't as long and drawn out as yesterday, so.....JOY! I wish we lived closer to you because I bet our boys would be the best friends ever! Thanks so much for sharing. Jenny Anderson

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  14. What beautiful, honest post, Julie. That took guts to write, but I am sure it helped you put words into just what you were feeling. And I love how you can feel the love you have for Matthew through those words!

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  15. My oldest daughter (she's 9 years old) has autism and SPD. It isn't always easy, but I can tell you it does get easier. We remind ourselves often that she may have autism, but she is not autistic. She is so many great things, as is your son I'm sure. One thing is certain, having a child with autism makes you appreciate the little things so much more! I recognize your hubby from your picture as my daughter's dentist, and he is wonderful with her! :)

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  16. Julie, I appreciate your openness. I too have a son with Autism. His diagnosis was at only 18 months old. As I read your blog, I feel like you are a fighter and the best advocate any child could ask for. I am impressed, and also inspired. I have had to learn to accept it, and it hasn't been easy. The amazing thing about my son with Autism is I know how close to our Heavenly Father. I think a label is hard to deal with, but it also opens many doors to therapy, information and answers. I know so many strong Mother's like you who have been blessed with a Special Child. It's scary, but it's also an honor. You are so educated and able to help him develop and grow. Give him time, he will develop. Miracles happen, little miracles every day. Keep working with the amazing teachers he has, and he is in the right place to get the best education he can. My son Spencer had the same teachers as Matthew at Grass Valley. He is in good hands at school and at home. Things will click for him slowly, but they will. You will be so grateful for your other children to help you with him as he gets older. He will learn from their examples and have the everyday interaction he needs to work through some of the behavior and developmental delays. Remember they are delays. Eventually he will grasp them. When people are rude to you or impatient, feel free to educate them. Let them know your situation and you will see their tone change. It's so hard, but it's worth it. I feel like it's a huge blessing to be my son's Mother. You should stop over thinking it, and just embrace this new reality. Wonderful voices like yours, make it easier for all of us to live with and understand these special little ones. Thank you!

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  17. Thank you for sharing this. I think there are a lot of good people out there who will see what you see in your Matthew, and Heavenly Father will put them in your path. We have a neighbor friend who has Asperger's and we just love him to death. He's a great kid. And he has had some great teachers at school that have worked together with his grandparents (he lives with them) to find what works best for him at school. The first few years were really hard they've told me. He is in 3rd grade now, and from what his grandmother was telling me it has been the best school year so far. I have noticed a major change in him in just the year we have known him. With patient loving grandparents to advocate for him, he has progressed so much. I am so glad his grandmother told me in the beginning that he had Asperger's, because then I was able to understand his behavior better, and help my kids understand the fits and moods and things. And like I said, we all really love the kid. Keep up the good work!

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  18. Thank you for being wiling to open your heart up. When I read that you now are going to write a blog, my first thought was "Finally!" because you've got so many great things to share with the world and so many people to INSPIRE. This is one great way.

    I love the last paragraph and quote by Stephen Covey "The greatest gift we can give our children is to communicate their worth and potential so clearly they are inspired to see it in themselves." True for everyone we come in contact with.

    Love this and love you and Dr. Todd!

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  19. I found my words...your title "Everything Changed"...Everything about MY LIFE has changed since the moment I met you and was blessed to become a part of your family's life...especially Matthew's. Everything has changed for you, and Matthew will spend the rest of his life changing everything for everyone who crosses his path, in a most beautiful way that only he can! I can't wait to see the changes he creates in this world!

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  20. Julie....I'm not exactly sure how I stumbled upon your blog today, but I'm so glad that I did. (You and I were in a ward together in the Cottonwood Heights area years ago!) Wow....how our lives have changed over the past 5+ years!!!

    I married an amazing man (a widower) and became an instant mom to three children (ages 12,10 & 7 at the time.) Our oldest has Asperger's Syndrome. Talk about a learning curve!! As I read your first blog post tears streamed down my cheeks! You are an amazing person...and you are exactly what your little Matthew needs! I look forward to checking in to some of the resources that you have discovered! (We live in Redmond, WA.) Wishing you great success and happiness! Thank you for sharing your experiences! Sincerely, Amy

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  21. My friend's friend posted a link to your blog on Facebook. I am so glad that I clicked on this link though. You have inspired me. I also want to say that I am a teacher and last year I had a student with Autism in my class. I have always had a connection with anyone that has a "disability". I want to say that he made the classroom a better place. I cannot imagine my life without knowing him. I wish you and your family the best.

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  22. Thank you! for sharing your history. I felt the same when my son was diagnosed with autism, but like you, I prefer to see the potential of my son and not his label.

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  23. Thank you! for sharing your history. I felt the same when my son was diagnosed with autism, but like you, I prefer to see the potential of my son and not his label.

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