A Faith-Filled Follow-up

 

Dear Prayer Warriors,

Here’s the scoop, two weeks ago Anna was checked out by many therapists in the Jeffco school district all at once. Since then they sent us three pages of ability evaluations. In response Lindsey edited their findings, elaborated about Anna’s strengths and weaknesses, provided history/diagnosis, prioritized Anna’s disabilities, made goals, read a dry book on Cortical Visual Impairment (CVI), and had coffee with a mother who had already gone through the process. I helped by taking care of the kids, reading what she wrote and adding a light-hearted joke here and there.

It was quite an ordeal just to make it to the IEP meeting. What made things a bit more tense is the number of horror stories about bad IEP meetings we’ve heard on our parent forum: School districts not accommodating, Disabilities being classified too generally so the goals are vague, parents crying, comments that put a child “in a box”, the list goes on. That is why we knew we needed to ask for prayer. Now that we are on the other side of that harry beast I can see how God escorted us, chilled us out, and led us through it in 2 and a half hours.

The school district was incredibly prepared. I didn’t feel like it was a chess match it was more like Rummikub when you borrow one of the displayed tiles from a neighbor so you can complete your straight. They had great goals for Anna, coming alongside us complimentarily. We selected vision as the disability for the school to focus on. The vision coordinator there was so impressed with Anna that she asked to have Anna assigned to her.

Which brings me to another grace received this week; in preparation of the IEP meeting we had Anna’s annual CVI assessment. It’s a 1-10 scale (10 being normal vision) and Anna scored a 6-7. Last year she was a 4 and the year before that she was a 1. This girl is beginning to see! Now we got her school focusing on it too. There’s no telling what ability the Lord has in store! We have praised and trusted Him in blindness so I know we can keep on praising and trusting God in sight no matter. Alleluia.

Please Pray:

-For Anna as she has to learn to say good bye to therapists that only work with the early intervention system (Ages 0-3). We thank God for one in particular that connected with Anna, drew out potential, and cared so much.

-For Anna’s new schedule and routine, she will be going to a school 30 minutes away during nap time with much social interaction (soon after her third birthday).

-For God to be honored at Anna’s 3^rd birthday party as we celebrate her life. May we would find creative ways of testifying the Lord’s goodness and faithfulness to us in this past year.

-For doors to open on Anna’s new year, for a resolution of her reflux. For another intensive therapy trip and for the Doman “Patterning” classes Lindsey and I would like to take.

I remain so thankful for you prayer warriors, I know prayer to be more precious than any financial contribution and more lasting than “good vibes”.

Nic, Lindsey, Anna, and Simon

Dependence Afresh on God

 

Dear Prayer Warriors.

As Anna’s parents we want her talking over seeing, and seeing over walking, and walking over grasping, and grasping over eating table food. We have been forced to think in these terms as we draft up the legally binding IEP (individualized educational plan) this coming Thursday with our school district.

The dilemma is that our time and effort for therapy will make more fruit if we get away from our list of priority and observe more of what Anna is showing us as ability. These days vision and gross motor seem to get us the most response. So it gets complicated when parents want to revise an IEP’s because their child is suddenly experiencing a surge of ability in something that wasn’t a focus of the IEP. We need wisdom and a heart fixed on perfect peace for this meeting.

I’m always humbled that in my heart I have a voice of thanksgiving to God for the mercy afforded us because Anna’s IEP does not include seizure management or oxygen administration. Another perspective of grace that the Spirit places is that I live in a country that has designed a system to optimize Anna’s cognition, physical ability, and social needs through the school system. So we get a small respite. I always picture the poverty of India and how my family would fare in caring for Anna in that environment.

Anna has helped us see how much we depend on God regarding all things.

When the deluge of diagnoses kept coming, we felt helpless yet God shepherded.

When financial pressure kept coming, we felt helpless yet God provided.

When progression turned into regression of ability, we felt helpless yet God encouraged us.

It has become clear that our plans, the control we have over our lives, is such an illusion. Pride and Satan work to keep that illusion realistic like “I’m not a man if I can’t handle what life throws at me.” However I have found that there are times when life throws way too much at me. It is then that I have learned to depend, cry out to, and wait for God. The Lord holds us together because He is Sovereign. We go to Him with our illusion of control over Anna and say “Lord have your way and plan with her.”

Please Pray:

-That God would bless Anna's new GI medicine. To help resolve the reflux.

-For Anna to be surrounded and providentially placed at the right school for her with the right team of teachers and therapists.

-For wisdom as we draft the IEP document Thursday.

-For time to blend her food, she has been getting too much Gerber.

-For her upcoming third birthday celebration that there would be no illusion of who has been sovereign, May God get the glory for that celebration of Anna's life and He has helped her everyday.

Thanks for praying,

Nic, Lindsey, Anna, and Simon