14.4.12

Miracles never cease...


Moroni 9:15 - And now, O all ye that have imagined up unto yourselves a God who can do no miracles, I would ask of you, have all these things passed, of which I have spoken? Has the end come yet? Behold I say unto you , Nay; and God has not ceased to be a God of miracles.

16 Behold, are not the things that God hath wrought marvelous in our eyes? Yea, and who can comprehend the marvelous works of God?Today I am going to get a little more personal than usual on this blog. I'm going to share something that is near and dear to my heart. It's something I never really blog about and rarely talk about to people. It's about my oldest (almost 12 yr old), sweet boy, Josh. He has Asperger's syndrome. He was diagnosed at the age of 7 in the 2nd grade, though Mike and I always knew that there was something "unique" about our cute and quirky little boy. We always knew he struggled to communicate his needs and that social settings were really difficult for him even at a young age. Often times, he wouldn't answer people and he never looked at anyone in the eyes, yet we knew he wasn't a rude little boy. On the contrary, he had such a strong and sweet spirit even at a young age...it's hard to put into words. As a little boy it would break my heart to see him trying to interact with other kids, as he struggled to reciprocate and participate with them. The desire seemed to be there, but he just didn't seem to know what to say, or do often times leaving him alone. In kindergarten, I drove by the school one day to drop off his lunch and noticed that his class was at recess... I watched him from afar. all.by.himself. He didn't seem upset by it, but he didn't seem happy either. I could almost feel what he was feeling just by observing him. He seemed to feel so lonely. I don't know about you, but to me that is the worse feeling in the world. Fortunately as faithful member of our church, we have a knowledge of a loving Heavenly Father that we know will never leave us alone and a Savior who suffered all manner of pain partly so that we wouldn't ever have to feel alone in our suffering...but as a small kid, that is hard to understand. Kids feel understood as they interact with each other and have experiences with one another, but here was my little boy not knowing how to reach out and make connections. So we had him formally tested on our own and our suspicions were confirmed. We received an official diagnosis. Asperger's. We had an initial sense of relief. Relief that we weren't crazy.Relief that our intuitive feelings were correct. Relief that we knew what we were dealing with and that we could get Josh the help that he needed. After the fleeting moment of relief, sadness and fear sunk in. Would Josh be able to lead a "normal life" (though I've come to learn that there really is no such thing as "normal") would Josh be able to connect with people, communicate his needs, express satisfaction and pain,find joy in relationships, feel understood? would he be able to go to college and be on his own, be able to serve a mission, get married, have a family one day?... So many unknowns... 

As time progressed and we learned more about Asperger's, on our own we sought help from developmental specialists in helping Josh learn social skills and communication, to teach him coping mechanisms for his social anxiety, and find ways to help minimize some of the many symptoms that people with aperger's seem to have (ADD or ADHD, disorganiztional skills, obsessive behaviors, extreme melt downs, withdrawal...etc). We even went gluten and casein free for one full year to see if that would help minimize some of those symptoms. Though in some ways it helped him with his ability to focus, it created a whole slew of other problems...Josh already being a really picky eater,and he had pretty bad texture issues with his food and a very limited diet.  GFCF was a huge obstacle for him. He came to HATE eating. Our already slight boy, lost 5 lbs that year and was more depressed than we had ever seen him before. So off the diet we went and figured out other ways to help him deal with his symptoms. Over the years we have had so many ups and downs, but we have witnessed miracles all along the way. We have spent so much time (and continue to ) on our knees praying on his behalf and ours to know what we need to do to help him. One of the biggest miracles we've witnessed  is that we have NEVER had to use any kind of medication to help Josh with ADD, anxiety or depression. For Asperger's kids this is incredibly rare (not that we think meds are bad, but we were prayerful about it and felt really impressed not to for Josh) Our boy who "couldn't write" got the highest marks on his writing TAKS in 4th grade and even had one of his stories chosen to be published in a school book. Miracle. We have witnessed him pray fervently for difficult things (that to most people would be easy, every day tasks, like speak to someone new today, ask for help when he needs it, answer someone when they ask  something while looking at them) and watched him thrive in situations that are uncomfortable for him. Miracles. He has made and kept friendships (very few, but that is what makes him happy). Miracle. We have seen him come out of his shell and put to use the social "tools"that he was taught unprompted (that come naturally to us), we have seen him speak up for himself (which is huge for him), and demonstrate compassion for others.  WE have been able to CONNECT with him as parents and have seen him find joy in connections with us and others. Miracle.
The first year after having him tested, I was in denial a little bit and kept thinking we could "fix this" on our own, it's no big deal, we don't need any help. Then his 3rd grade teacher recommended we get him tested again through the school district this time so that he could get the help at school that he was entitled to receive. So we did. Diagnosis was the the same. So, at the beginning and end of each school year we have an ARD (admission, review and dismissal) meeting for his IEP (individualized education plan) where Mike and I meet with the principal, his teachers, the school counselor and a whole team of people that help us come up with goals and a plan to help Josh thrive in a school setting. These have come to be really spiritual experiences for us, as we always prepare by fasting and lots of prayer before hand. Each time I have felt the spirit giving me the words and the ability to clearly communicate and advocate on behalf of our boy. I have felt empowered and inspired to say things I never thought I really knew or understood about asperger's and how to get Josh the help that he needed. I came to really look forward to these meetings and to be able to see at the end of each year the progress that he had made and hear his teachers marvel at his progress too. Many times shedding tears with me as we witnessed him grow together. 
This last week Mike and I went to Josh's end of the year ARD meeting for the first time in middle school. The ARD at the beginning of this year had a gloomy tone...this was jr.  hight after all and now he had 8 teachers instead of 1. Also at that point he was already feeling overwhelmed with all the change that comes from 8 periods but mostly because he was dealing with a tough Lang. Arts teacher who he was already struggling with from the get go. This teacher told me to my face that Josh was not capable of getting an 'A' in her class with his "condition" and inability to write. She also said that she just didn't have time to try to "connect" or "coddle" him like an Elementary school teacher could (she said this in response to my telling her that he tends to work harder and push himself when a teacher connects with him, encourages him and shows him compassion since writing is such a struggle). I went home in tears and ALMOST had him pulled from that class because of how cold hearted and mean she was and because we could tell that he dreaded going to school each day just because of  her.  I had to calm down the mama bear in me!!  We prayed about it. We decided that this was one of those life's lessons where Josh would have to learn to deal with conflict and learn how to deal with harsh and mean people sometimes. Ok, so what we really told him was that he would just have to work and pray harder than ever before to show her what great things he was capable of and that this experience would just make him a stronger writer and that Heavenly Father was giving him an opportunity to stretch and grow and help make this weakness a strength. A few weeks later, we noticed a positive change in his attitude and learned that this teacher had been given a teacher's aide...of all people, the aide happened to be a nice guy from our family ward that was also very quiet like Josh, but was a brilliant screen play writer...sent to Ms. B's class just to help Josh. Miracle. an answer to our prayers. Through out the year he has had his ups and down's with Ms. B... but at this last ARD meeting this week, she spoke of Josh in a totally different light. He has since received a strong 'A' in her class and she described him as a marvelous writer when he chooses to write and that he is a sweet boy with a funny sense of humor. Miracles people. Other teachers described him as shy, well liked by them and students, bright, kind, and certain teachers (math and science:) have said he speaks up often in class ,and again, has a funny sense of humor. Miracle. He has developed a love of music and has become somewhat of a "band nerd" as he has developed  confidence in learning to play the trombone. He has always loved watching sports (the quickness of the interaction was overwhelming to him before) but he now LOVES to play basketball and football (not saying he is awesome at it, but I could care less!!! he is finding JOY in playing and interacting with people!!!) Miracle. 
During the ARD they recommended  he be dismissed from the social interactions class he has been attending since the 3rd grade, since he now knows how to appropriately engage in spontaneous conversations with out help. It was projected that he will be removed from the special needs program by 8th grade. miracle. Again everyone marveled at the progress made from the beginning to the end of the year and they even said that if he were to be tested again now, that he would probably not have the "Asperger's diagnosis". Miracle. Now, does this mean he is "cured" of this autism-spectrum disorder? No. We can still tell that daily, mundane things are still a struggle for him, he will probably always still struggle with social settings his whole life and feel little bit "different" in large group settings, have occasional meltdowns... We know we will continue to have some stumbling blocks, frustrations, and battles...but we will also have triumphs, victories and progress AND we will get to continue to witness miracles. We are so proud of this boy as he is thriving and learning how to handle life and the strengths and weaknesses he has been given. He is witnessing the Lord's hand in his life as he receives divine help when he prays for it. He is happy. Miracles. He KNOWS that he has Asperger's and that it's just a name to describe the strengths and the weaknesses that he was born with, and he is OK with that. But he also knows that it is within his power to decide what to do with those strengths and weaknesses and that he can witness miracles. I am so grateful for miracles and that they have not ceased and that we have the opportunity each day to witness them. Whether they are big or small. I know that there are so many people out there that are struggling with much more difficult, life-altering circumstances than we are. Oh, how I hope and pray that they too are recognizing and witnessing the miracles that Heavenly Father is providing them throughout  their struggles. I'm not sure why I chose this blog to share this on, but I just felt like I needed to. Phew. that was long!! Sorry for the length of this post!! Thanks for listening.

4 comments:

  1. i cried and cried through that whole post. joshy is just the sweetest boy and has so many amazing strengths. you and mike are AH-mazing parents, who look for the good in every situation, and really search for answers to your prayers.

    this might seem like a dumb thing to say, since colse does not have aspergers, but i feel like i can relate (a little bit) because of the things we've gone through with him. a few years ago, i was crying pretty much daily, trying to figure out how to help my sweet little child survive in the world, but things are a MILLION times better now, and i've learned what a blessing that boy is in my life and in the life of others.

    i truly think these little kids have amazingly sweet spirits and they can grow up to do great things in the world. they might be a little 'different' than the average kid, but that's not necessarily a BAD thing. you're a great example to me of faith and perseverance. thank you! love you!

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  2. Thanks for your very sweet, kind and supportive words, Care!!! And for taking the time to read that novel;) J-IS an amazing boy...not sure WE are amazing parents, but we are sure learning with him and are very grateful for his patience and forgiving nature with us! Who knew parenting would be such a rolllercoaster of emotions? You always hear that, but never truly "get it' till you have kids...special needs or not:) I'm so excited to see you soon!!! Can't wait!! Love you!!

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  3. Wow! That is so wonderful that his English teacher has had a change of heart and can now see what an amazing and super smart kid he is! So many wonderful miracles for Josh and you guys. I enjoyed reading your thoughts and feelings and I admire what wonderful parents, teachers, guardians, and advocates you and Mike are for each of your kids. You have given Josh all the love and confidence he has needed so that he has been able to overcome many obstacles that would have probably halted other Asperger's Syndrome kids (even things that kids without AS would have found difficult). We LOVE Josh and love you guys too!!

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  4. Oh Caroline . . . tears. I LOVE that sweet boy -- and his sweet Mama (and Daddy). He has always been such a special little guy . . . ever since he was tiny, there was just something SUPER sweet and strong and good about him. He is a light in this world and we are sooooo grateful that we are family. Love you.

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