Tuesday, June 8, 2010

From the heart of a "Special Needs" Mother

Below is a answer to a question emailed to me after a rough few weeks. I am sharing it as I truly believe it shows How GREAT and AMAZING our God is...

I pray it ENCOURAGES and brings HOPE!

I am seeing that my plans and even doctors and therapists and school administrations may not be God's plans...I think it just all hit me at once..it seemed like with in a week was Gabe's neurology appt and his school IEP and it tends to be draining and emotional..it is hard to explain until you have been through it...you see your child the way you want perfect and your joy and then you go to these things and you see him in the light of standards and ideals and he doesn't measure up and he is a 10 year old boy who is 3 years developmentally, still not fully potty trained, needs assistance with everything, he lives in this other world with no thoughts or concerns or ability to identify dangers or boundaries... you watch him stare off into space and not associate with these people and it is disheartening. You walk out discouraged and wondering why and you doubt your abilities and wonder where you go so wrong.

It is easy to see Jesus and his faithfulness and glory when things are going smoothly but when so much comes at you at once ....it is easy to be swayed and not notice that it an atack of the enemy to stir you away from the things of God and so I just needed to step back, not listen or hear anyone's opinions and wait for God to speak to me.

I am coming to place where I am saying Thank you God for bringing us to Virginia, it is amazing the growth Gabe has done here, the care he has gotten medically is amazing, we have been blessed with an Amazing pediatrician who relates so well with Gabe and takes time with him and has learned to be patient and he even has the same routine each time we go see him, how he opens the door slightly peeks in to give Gabe warning and then says I see Gabriel..everytime..it is amazing... his neurologist is an older white gentleman that speaks clear English, you never realize how much confusion that clears up...they have a clean office, no clutter, no distractions...you entire a door to an empty room and get on the elevator and you step right out into his office where it is quiet and maybe only one other patient a Disney movie always playing, you wait less then five minutes and he spends as much time with you as you need..you never know how much stress this takes off the parent and the frustration and behaviors it eliminates from the child with Autism.

His school though is an hour away is provided by God..the most perfect fit for Gabe. It was a huge issue of fully putting my trust in the Lord to send him alone on the bus to and from school an hour away, trusting God to provide a bus driver with compassion and joy and and a bus aide with extreme patience and love, it wasn't the first driver or aide, but God provides always the best in all things..we have been blessed to have the most amazing bus driver Ms. Karen, who I have been inspired by her love for Jesus, her strength in Him, she went through battling breast cancer and when she left to take time off for chemo and treatment she said with conviction and joy I will be back in a few months...we prayed for her for months and sure enough she called to let us know she was coming back..God continues to use her to demonstrate a life of Joy only He can provide. Ms. Phylis his bus aide is another women of God... He truly has given her the gift of patience and endurance..an hour bus ride with Gabe is like running a marathon, continual redirecting, singing, reading, saying stay calm..keeping him in his seat harness is not as big of an issue as the beginning but she is always smiling and laughing when she walks him off the bus no matter how long the ride seemed or how difficult it may have been that day. His school is the best fit for him, it isn't the closest, or the less expensive solution but the perfect placement for him. We have been blessed to have Ms. Carol the past 2 school years and if you would continue to pray that he is placed with her next year that would be great. She spends more time with him then i do and I am cool with that..God has given her a heart for him and an opportunity for me to minister to her, when she calls and we talk about behaviors or maybe she is having a difficult time I say lets pray and see what God does and several times after i have spent weeks or even months praying God does something amazing and He answers and she sends me an email and says your prayers were answered and I don't know if she is a christian or not but I know she sees glimpses of His glory and goodness through Gabe and our family. He has several therapists who are amazing and add to the success of his growth..Ms. Jen is doing so much to help us give him the tools to communicate, it may be through pictures or sign language majority of the time but you know when he is able to share a complete thought or want you as a parent don't care how he does it..you just thank God you were able to understand it before it made him upset. Ms. Chrissy is his adaptive PE coach and she is adorable..so fun and compassionate..she tries so hard to get him involved in everything and to help him master the skills of balance coordination... i just love to watch him play in the yard and watch him grab a baseball and see him say Ms. Chrissy says hike...and although he is a bit confused I know he enjoys his time with her....he is now able to swing a bat and attempt to hit a ball, he can get down and huddle over a football and say HIKE and then pick it up and run, he can catch a ball with success.... There are so many more at his school who are amazing..Ms. Gretchen is aide, Ms. Wanda is lovely nurse..I love her and her concern and care for him, they way she nurtures his cuts and scraps and cuts his fingernails and looks after him when he has seizures, the detailed notes she sends me each time she sees him no matter what it was for. Ms. Rhoda the director of the Autism Center ( She reminds me and looks like my grandma Connie), you can just see in her face how much she desires for each of these children to do there best and to reach their potentials..pray for her she has alot on her shoulders!

This doesn't even scratch the surface of how much God has done for Gabriel through this move, the community we live in is slow paced and they are handicap sensitive. You go the parks and they have special equipment, people are less quaky and more patient when you are in restaurants or stores..they stop and wait and respond...

Our church body I truly believe God prepared there hearts before we even arrived. They are loving and they draw to him and they want to hear what takes him 10 minutes to speak. They allow him to stand in worship and clap off key and the only time he sits quietly not moving a muscle is during the 30 minutes of devotion and prayer time we have before each service and he is just quieted by the spirit...at times throughout prayer he will speak "yes" or "Jesus" and it is at the appropriate times of agreement. It is amazing to me...how much he may not know or be capable of but he knows and loves the things of the Lord....when we are embarrassed or overwhelmed with him touching or grabbing onto someone they are so kind to rest our minds and enjoy their time with him...God has given the children in the ministry a special heart of acceptance for him...where once he was an outcast in his church children's group and very few wanted him to join (though God is always faithful to bring those few who really did love him, which we are thankful for) here they all welcome him..they choose him to be on there team even though they already know this means they will loose, they let him get up on the stage and lead worship with the girls..he knows all the movements and words better then most of them and when he holds his ear and says I can't hear you..they usually sing a bit louder. The amazing teachers God has raised up to teach him on Sundays is wonderful, the separate classroom and the way the church has really researched his special needs and figured out how to best minister Jesus to him is amazing...the way the didn't settle but expectated God to do great things...the added material like every bible story on a DVD told in a movie that we play after we read each story is a perfect way he really understand and relates to...

I stop and ask Jesus to remind me where He is in ....How can I not stop and PRAISE Him and KNOW He still has a wonderful plan for Gabriel! Not my plan, not John's plan, not the schools plan, not the therapist plans, not even the neurologist plans but the most PERFECT plans of a loving Father who created him!

I once believed that when John and I got married the perfect plan would be to have lots of kids really early so by the time they graduated high school and went to college or where ever God leads them and move on in their own lives John and I would still be young and a great age to truly enjoy our own lives... but now I see God already knew that we just needed to be younger parents because Gabriel would need us a bit longer.

Being a wife to a man who loves the Lords, and raising 5 gifts from God, though not always easy, is truly the best way to enjoy life!

I am truly ok with the fact that maybe Gabe will never be the president or a doctor or win a gold medal but don't ever tell me he is not exactly who God created him to be.... maybe he will not be able to ever live on his own but I believe God has already created that special girl who is going to know how to love him and provide and care for him the way that I would... and if not I know God has a plan and a purpose....

Who is Gabriel.... He is my biggest challenge, He is my Joy, He is my heart, He is a boy who admires his dad, He is a brother who desperatly wants to understand and fit in with his sister and brother, He is a boy with unconditional love and compassion, He is a Worshiper of Jesus and a pure reflection Of Christ's faithfulness...

So with all that said..I am learning that the three cord strand that binds is not only in regards to marriage but in all things, so once I take myself,Special Needs and wrap God around it... I have no choice but to Trust and Believe God has it all under control.

When I feel week..He is my strength
When I am sad...He is my Joy
When I am discouraged..He is my Cheerleader
When I am ignorant...He is my wisdom
When I am lost...He is the way
When I am broken... He is the healer
When I am dry... He is my filler
When I am discouraged... He is my Hope
When I am defeated..He is the victory

I am choosing to take one day at a time and
let God have it to do with it as He may...


ourjoyfulljourney said...

Amen and AMen!
Our GOd is so good..and He does not work in the ways of Men, He steps out of the box! :)

Isaiah 55:9

Jen said...

This post was just what I needed today!! Our 13 year old daughter has auditory processing disorder. She has been giving me "trouble" lately. Much of what you describe in your post is what I've been thinking!

What a blessing!! Thank you Lord for leading me to this blog today.