Friday, October 28, 2011

What it is like having children with special needs.

Today I felt like a good rant. And I feel completely qualified to address this subject since right now, Andrew and I are managing 5 with special needs 2 without. Each carries with them their own special set of requirements and preferences, and I'm here, with my other full time jobs, of managing our large household and managing schoolwork, homework and homeschooling, trying not to be completely buried in it all. And not doing a very good job.

Let me introduce you to my family, First, there's Andrew. He's my awesome, hardworking husband. He works for Fedex, He's a swing driver. He's incredibly talented and has this incredible set of navigational skills that if you don't have them, (like me!!) its particularily notable!! he's 39, now, i think? LOL. I'm Rebecca, I'm 35, I am a SAHM and love to homeschool the little ones that i'm able to right now, that would be Leif, my 5yo and Nik, my 12 yo and a bit of alex, my 16 yr old who is currently attending community college concurrently with homeschooling high school.

Alex has autism, he's an aspie. He is the one who gives me hope that there's a light at the end of the tunnel- he's become a sensitive, caring, and phenomenally SMART young man. He's gotten nearly perfect scores on both writing and reading Compass tests and scored into Calculus in college, where he's currently pulling a 3.8 average. He struggles with social issues and has some temper problems but is overall doing very well!

Nikolas is my 12 yo. He tested into the school district a couple of years ago several years behind grade level in math, reading and writing. We suspect he's dyslexic, but never got him dx'd He is so hard working and buckled down and pushed through his slow reading by doing it CONSTANTLY. The result is that while he still struggles with writing in particular, his math and reading are near grade level and he's got college level comprehension skills and vocabulary. I'm so proud of him.

Next is Chloe- my little mini-me :) She has Autism as well. She was diagnosed with Aspergers last month, and is currently in public school. Being an Aspie, she likes things really cut and dried and likes rules. She is a bit behind in math, but advancing nicely, and reads at a 9th grade level (she's in 5th grade) She reads Beverly Cleary books pretty much nonstop. Though i think she might have just run out. She is precious and loving and beautiful. I struggle with her to get her to understand the idea of the Gospel. You can tell it doesn't make sense to her.

Then we have Annabeth. Annabeth is my8 year old precious double dose of Grace (her name means Grace and her middle name is Grace :) She's a spark plug and is always running. Shes full of joy and a natural hard worker. She's one of the most extreme special need children in our family right now. She is struggling with reading, writing, math, being able to hear and absorb what people say and has a very very depressed vocabulary system. We have no idea what is wrong, and we are struggling to figure it out.

Leif is our 5yo. We always talk about how he and Annabeth would have made the cutest twins. He looks like a boy version of Anna, cute, petite, blond, with a winning smile. Leif has no special needs to my knowledge and is a BREEZE to homeschool. We think he might be an up and coming math whiz like Alex. Our struggles with him are having enough time with him, and that he seems the most morally negotiable of the bunch.

Asher and Elliott are our 2yo twins. Elliott was born first, is a tiny little bundle of energy and is so interpersonal and articulate! Asher is the opposite, except he's a bundle of energy too. But his energy is random, angry, and LOUD. He's been in therapy the last 6 months or so, and we suspect he has autism of some kind. We are praying its just aspergers. He, along with Annabeth, are our biggest focus right now.

So that's us! I'm finding life to be an extreme struggle right now. There's no time- there's no money- there's no forseeable hope that anything is changing any time soon. Right now, stuff just isn't getting done. School is getting done, I'm reading with annabeth after school, and thankfully Chloe is a self starter and easily gets her own homework done. but our house is always looking cluttered, meals are spotty, we're trying not to eat out, because financially we're nearly sunk, but that takes time too and i've not figured out how to get it all done yet. We're trying to manage asher's 6x a week therapy, anna's diagnostic stuff and visual therapy, Alex's bus schedule, homeschooling nik and Leif, and i have to admit, i'm near breaking point. I don't know how much more of this I can take! I'm currently in the process of trying to see if we can get respite care for Asher, as he's a full time job himself- he needs constant attention.

Did i mention that having special needs kids is EXPENSIVE?!? thankfully we qualify for dshs medical to supplement dh's medical from work or we'd be entirely sunk! But Asher is constantly breaking things, popping holes in the walls, destroying stuff, breaking windows... see a theme here? Andy has to find the perfect balance of work and being home to support me, and each carries with it serious consequences. I'm trying to squeeze blood from a lemon and its not happening. I would really appreciate prayer. I know that its God that's making all this WORK. As difficult as things are, they are going WAY better than they ever should be, and as much as I struggle, I know i'm witnessing miracles every day. I'm so priviledged to be in this position. But i'm tired!!


  1. Oh Rebecca. Our problems here are medical, as you know, but I DO so relate to the expense and time being so overwhelming that you can feel like you're drowning. {{{{Rebecca and Andy }}}}}

    If I had to say the one thing that helps me most, it would be to daily try to maintain a perspective of gratitude for our cozy life in comparison with the mamas of the world and the mamas of history. I do not have to daily watch my children die because I can't find them a bowl of rice; I do not have to sit helpless by wondering if they'll die of every cold. My babies have heat and food and books to read; I'm so blessed. I think we all know this, but the challenge is holding the thought always present for every overwhelming moment.

    If I had to share one super-trivial thing that's been helping me (and my two sisters are using and raving, too - they're both feeling swamped down by their lives right now as well) I would share this: a British TV series that some kind soul has uploaded the whole first season onto youtube (stare at the numbering system for a bit until you figure out the episode, number, etc - I've linked you to season one, episode one). . Each episode is divided into two. My library system, at least, has the associated book, which in America is called "Jamie Oliver's Meals in Minutes". But really, watching it first is a must and the book is just helpful to make shopping lists.

    Blessings to you, dear sister - God has given you something very big <3