Tuesday, August 21, 2012

Beauty From Ashes

Life isn't fair. We learn that as toddlers and life continues to prove the point repeatedly as we mature. As humans, we plan our lives exactly as we would chose them to be, but, inevitably, we are thrown curve balls that alter the dream and paths we hoped to follow and we must build new dreams and alternate paths to achieve them.

Yesterday, life threw our family such a curve ball. It was not totally unexpected - at least on my part. But somehow, hearing it made official, seeing the words written on paper, was more difficult that I anticipated. I have suspected since he was four months old. The clues were there. The signs were there. But it didn't have to be real because no one had officially "made it so". Now it is official.

My son has Asperger's.

Asperger's syndrome, also called Asperger's disorder, is part of the Autism Spectrum and is a type of pervasive developmental disorder (PDD). PDDs are a group of conditions that involve delays in the development of many basic skills, most notably the ability to socialize with others, to communicate, and to use imagination.

Hearing those words from licensed professionals; seeing them written in black and white… suddenly, all the original dreams we had for our son changed. It hurts. I don't know how to raise a child with "special needs". I don't know how to protect him. I don't even know how to tell him. I only have nine years til he moves out of my house and goes off to college. Nine years to teach him how to deal with a world that he sees completely differently than me. Nine years to teach him how to break through his own barriers and become a functioning member of society - a task that is counter-intuitive to the way God wired him.

But God did wire him.

My son is made perfectly in God's image. God loves him even more than I do and He has plans for my son that even I cannot fathom or predict. My heart is broken for my son and the difficult road ahead for him. My heart breaks for the nine years we did not have a diagnosis and he struggled to function the way he thought we expected him to. My heart breaks for multiple times in the last nine years when I, his Mommy, did not meet his needs or respond in a way he understood. He must have felt so alone at times. My heart is breaking over the label "special needs" that will be written on school forms from here on out. I pray his self image never suffers from these words on a page. My heart is breaking for his lifelong challenges with finding and building relationships. I pray God puts loving people in his path that will love my son because of who he is, not in spite of it. I pray God helps my husband and myself find equal ground in the days and years ahead so that we can be a united front and a safe place for John to land when he needs it.

Our family is embarking on a new journey. My son hasn't changed, but our understanding of him has. His world hasn't changed, but now we will (hopefully) be able to provide him the tools to navigate it more easily.

There are so many people out there so much farther long in this journey than I am. I welcome and covet your insight and any tips that have helped you guide and raise your children. What worked, what didn't work, what resources or therapy were most helpful?

Lastly, please pray for our family, especially James, myself and John, as we re-learn how to relate to each other and seek appropriate outside therapy and resources - that we would be guided to the right places.

God does not make mistakes. My son is a perfect example of God's beauty displayed differently than what is perceived as "normal".

I LOVE hearing from you!! To leave a comment, simply click on the word "comments" below this post, just under my name!


Jennifer said...

Praying, Jeni. That would be so hard. But God gave John the perfect parents for him...He will enable you in ways "beyond what you can ask or think". We'll be praying.

Robin Rollins said...

I'm going to call you later, my friend, if thats ok... Your children jumped in my heart in those few short days & planted thereselves there, how blessed am I :) I love you, sugar!

Laura Futrell Beagle said...

You are right. God has a perfect plan for your family and for John. God doesn't make mistakes. I can't wait to see what God does with John's life! I can't wait to see what God does with Jared's life (my "special needs" kiddo)! Our boys will have the most incredible testimonies! As a mother, my prayer is that the suffering be minimized to get to that testimony. I feel your pain! It is heartwrenching to see your child suffer hardship, but Romans 8:28 baby girl! Sometimes, I have learned to be thankful for my son's "special needs"...He has made me better with it, and He has provided everything that Jared has ever needed! Maybe not in my timing, but sometimes the lessons learned by waiting are more valuable to him later in life than the easy road. Jared's theme song that makes both of us cry to this day...Casting Crowns "The Voice of Truth". Best song ever when he struggles, and now that he is 16, he finally GETS it. I will always be praying for you and your road ahead, but I KNOW that you can do it...no doubt. Love you!

Kathy Abrahamson said...

You all are in my thoughts and prayers! We all have challenges to face, and I pray that you all will overcome this one with strength and grace, and that God receives all the glory! He has big plans for John. God bless you. Love, Kathy

Heather Rose-Chase said...

Hi Jeni! Our mutual friend Kathy Nazareth sent me here. She was our angel when we lived in Fremont, CA and our second son was born with congenital heart disease which needed surgery when he was a few days old. She watched our older son at least once a week so I could run to a doctor appt or spend time with my husband. My older son was diagnosed with Asperger's when he was eight. I understand the worry of your son being labelled, but it's amazing how much help he received once we went through the IEP process. My son also has a very high IQ, which sometimes poses a challenge because people always think he is more mature than he is (he's 11 now) based on conversations. Then they observe some of his behavior and wonder what is wrong with him!! But I've chosen to look as Asperger's as a bit of a gift. He sees the world in a way I cannot. His insights are things I would never consider without him! We live internationally (currently in Shanghai, China having just moved here from Macau three months ago) which adds in an additional challenge. But honestly you can do this. Go beg, borrow, or buy all the books you can and remember John is fearfully and wonderfully made! Feel free to connect via Facebook!

Cynthia Meyers said...

We will both be keeping your family in our prayers as you all start this new journey. The Lord is close to the brokenhearted and He is faithful and trustworthy. Praying you feel His peace that surpasses all understanding and comfort as He holds you close and carries you through this time of uncertainty. He loves John and knitted him together in your womb and will display His glory through him in His plan. Love you guys! In Him, Craig and Cynthia