Fall is creeping in on Texas- slowly and surely the humidity is dropping and our nights are ever cooler. The light of autumn looks different- It has a depth and warmth to it. The trees try hard to show their fall colors (as best they can in the piney woods). And we are on the verge of something big.
After all the leaves have fallen and we finish a “winter” hibernation, we will be standing on the edge of what’s next for Eli. I’m trying to hide in this glorious place- pretending like I don’t have a huge decision to make looming overhead.
It’s a scary place to be. On some days I feel as if I am literally standing at the edge of a cliff as people behind urge me to jump off. Make a choice. Pick your path. I’m just now able to approach that edge to peek at what is before us- It won’t be easy and my heart is tender.
When Eli was diagnosed, I thought it was the hardest thing I had ever been through next to trying to have a baby in the first place). In retrospect, I think it was one of my biggest challenges and a defining moment in our family- but there is still so much more to be faced in this life and all of that feels like it happened to a different person. The truth is those things shaped our family but they don’t define us- fertility and Down syndrome aren’t things we think about every day.
Now Eli is here. My heart is living outside of my body- I thought I was raw before but mama love takes over and I’m so sick with worry. I can no longer wrap myself around him and protect him the way I did when I was pregnant. I don’t know how else to describe the feeling- it’s almost harder being so exposed.
My soul aches at this realization and often I’m brought to tears just thinking about it.
So here it is. Time to pick Eli’s educational path and set him up. I’m torn in how to handle it and I wish it were as simple as it seems on the outside.
While I’m grateful for the public school system and the PPCD program that Eli is entitled to attend, I don’t feel it’s the best fit for him currently. Mostly because he’s only three! He’s still a baby to me. Perhaps that’s naive to say but my heart just can’t see any of my children at age three in school. It’s one of the biggest reasons I decided to stay home- I want to be the one raising my children during this tender and special time.
I have no fantasies about being the only one who can provide for my children- I see and even embrace the viewpoints and knowledge of others when it comes to educating my children (it’s one reason why I love ECI so much!)…but I just don’t feel like PPCD is IT.
I could go into all the other options and the problems I see with each- financial, political, etc etc etc…but I’m not writing to do that. I think my heart and mind have already decided what we will do. While I have some researching to do and questions to ask, this just feels like the best combination of what’s available and what we can do as a family.
I’m nervous and scared…and grateful for winter. To hibernate. To hide away and snuggle my babies. When spring comes, I know I will have to emerge and face what’s before us. Until then….
Eli was recently evaluated using the Battelle Test and REEL3. I’m dang proud of him- all numbers are months.
Eli is amazing. He’s worth the fight and all these difficult decisions I’m facing. Pray I make the right choice, that God will clearly guide me and provide for Eli.
Age Tested- 29mo
Personal Responsibility- 34
Adult Interaction- 27
Peer Interaction- 28
Self Concept and Social Role- 23
Gross Motor- 17
Fine Motor- 28
Perceptual Motor- 24
Attention and Memory- 24
Reasoning and Academic Skills- 29
Perception and Concepts- 26
Speech is our biggest area that we struggle in. There is currently a 13mo different between what he can say versus what he can sign. Big things coming. I can feel it. This evaluation would have brought me to tears a year ago- I would have struggled to see the positives. To celebrate where he is and what he has accomplished. In fact, this eval was supposed to be done in April but I avoided it because his 1 year eval was too hard. But I’m glad I did it. No one test can tell a whole lot about who my son is or what he’s been through to get where he is. But it is a good tool to get us where we want to go and for that I am thankful.
That test can’t tell you how sweet and sensitive Eli is, or how he learns best by initiation and visualization. How he’s shy but so warm when he knows you. How bright he is- so much trapped inside that clever mind. How his smile lights up a room- how God calls him Light Bringer.
There is no one size fits all plan for how Eli can learn best and I hope that I will be able to bring him what he needs.