Here is the story…the AWEsome story:
We have a beautiful, amazing 9 year old daughter, Scottie. Scottie was diagnosed with PDD-NOS last March and is intellectually disabled (MR). Things have always been harder with Scottie and unfortunately not having a proper diagnosis for 9 years complicated our journey. This last year has been one of our hardest and it brought two huge challenges.
1.) She has been harder to parent. She has thrown more tantrums in the last year than she has her entire life. She has become increasingly more sensitive to her environment and situations, obsessive compulsive, inattentive, and anxious. As we try to figure out how to maintain a peaceful home and adequately care for our other children, we have had to come to terms with what we have been doing for Scottie, up until now, is no longer working. It isn't enough. She needs more.
2.) We have been at odds with her school. We felt like they were shoving her into the most restrictive environment before they really explored all other options. There are so many things that they haven't tried. We have had to fight…and fight…and fight. I have created binders full of every medical and educational evaluation, ARD paperwork, and IEPs. We are the parents consulting with an advocate and recording every meeting we have with the school. We were forced to acknowledge that what we have been doing for Scottie is no longer working. It isn't enough. She needs more.
One of the huge hurdles we have is money…no big surprise. Money is required for therapy. Money is required to send her to a school that specializes in children with autism. Scott works hard to provide for our family, but he isn't going to "get rich" while in ministry. I have a part time job that I love, but I am not going to make enough money to send Scottie to occupational therapy or to see a behavior therapist. Insurance is terrible. It just seemed hopeless…we felt helpless.
In December, we had to make a decision. Allow the school to dictate what they think is best for Scottie and allow her placement to change although we knew it was the wrong decision, or we had to take a huge step of faith. After our last meeting with our advocate, we realized that our next step with the school was mediation and then a lawsuit. I couldn't imagine fighting to keep her at a school and in system that seems to be failing my daughter, and ultimately it is not what we wanted for Scottie. I woke up the next day and told Scott to not take Scottie to school. We didn't know what we were supposed to do, but we did know that we had to withdraw her from school. Over the weekend we talked and prayed, and it seemed clear that our best option was for me to quit and homeschool Scottie. I had to leave my job. A job that I loved. My job paid for Jacob and Emma Grace's school, and we bought groceries with my income. Now what? I could say that God will provide. I could say that we will cut back. Did I truly believe it? Now what?
God has poured his blessings upon us throughout this faith step. He chose to use people to demonstrate His grace, love, and plan. We are overwhelmed by His goodness and the faithfulness of His people.
- The Wednesday we met with our advocate we received a generous, anonymous gift. A gift that was given just because they felt like they were supposed to give it.
- When I met with the administrative staff to tell them that I needed to leave, they were gracious. I was told not to feel guilty because I was doing the right thing for my daughter. Within an hour of leaving the meeting, I received a phone call from the academic dean and offered a curriculum writing job for my class so that I could still earn money and keep my toe in the door.
- My friends and co workers were so encouraging. I was told that they were excited about this journey for Scottie and for me. I had a parent of one of my students tell me that they were proud of me. Proud that we made the right decision even though it was the hardest decision. Words that blessed my heart and encouraged my brain…the brain that was full of disbelief. How could we be so reckless when we needed my income? How in the world did I think I could educate Scottie? I am not a special education teacher. I have no training.
- Scott received a phone call from a man we know from a previous church. He asked to meet with Scott to talk. (I paused far too long as I sat here typing this part. I paused because I still cannot wrap my head around the generous offer that he and his wife have made for my Scottie..for my family.) They want to give financially to help Scottie…whatever that may look like. They know of our story simply from reading posts and hearing bits and pieces of Scottie's story. I still cannot comprehend…
- My sister and brother in law gave us some money to help set up Scottie's classroom. Their gift touched my heart because I know that they support us. It blessed us.
God has poured His blessing upon us through this faith step. He chose my Scottie to demonstrate His grace, love, and plan. We are overwhelmed by His goodness.
The day I withdrew Scottie from school I came home and told Scottie that she would not be going back to school. I told her that I would keep her home with me and I would become her teacher. She stared back at me. I told her again that I would be her teacher and that I would teach her and Zoey at home. She simply responded with "no more school". Since that day, three things have happened (or in some cases not happened).
- She started sleeping through the night again. For months, Scottie would wake up in the middle of the night, and she was irritated and angry when she woke up. She has only come into my room once since the end of November. ONCE!
- She no longer asks me about tomorrow. For years, Scottie would ask us several times a day if she had school tomorrow. We would tell her how many more "school days" she had or if it was a "stay home mommy day." I knew that school stressed her. But when she stopped asking…. just to know that this stress has been lifted from my 9 year old's shoulder…oh what a blessing!
- My Scottie is back… we have a dear friend, Jennifer, who has been worried for months that Scottie was disappearing. They have always had such a sweet relationship. Scottie loves Jennifer and Jennifer loves Scottie. The other night Jennifer told me that she has started to see my Scottie again. She's back.
As I write this post, we have completed two school days. They had their challenges. I am learning so much about Scottie. Honestly some of what I have learned has left me in tears, but some of it leaves me wanting more…
More of Scottie
More of what God has in store
More of this journey
More of His blessing
More…More…More of God
I am so excited to be on this journey.
Even though I am not sure how we will do this financially, I have such peace. Scott has peace. More importantly, Scottie has peace.
God is faithful. I am in AWE of how faithful and loving He is.
That is our step of faith.