Wednesday, March 1, 2017

2017 Disability Day of Mourning & Raising a Strong Advocate

 Today, on the 2017 Disability Day of Mourning, I am thinking about how to guide G toward the path of advocating for the rights of the disabled. We are all about Autistic pride around here; there is no doubt that being autistic is a grand way to be. We cannot deny the challenges, though, and one of my gravest responsibilities is to teach G to recognize his needs and request support.

At 13, and being a sensitive guy, G is a bit young for the full story of why we mourn.  To be honest,  this is a tough subject to broach at any age, but we have to begin somewhere.

So we begin where we are. By stating categorically every single day that he is valued and loved. By making clear that those who claim to love someone would never harm them. By reminding him that he belongs to himself above all, that he has the final say in what happens to his body, by teaching him that we always begin with "No!", but have a right to physically defend ourselves if need be. We set a tone through our conversations when these stories make the news.

This is the hardest part of special needs parenting for me, but I know it has to be done. There will likely come a day when he wants or needs to move through the world without me, and I have to make sure he is equipped to do that. I don't have all of the answers, and sometimes I have to tell him so.

What I do have, is the conviction that he has the right to live in the world just as he is, and a desire to help him do just that.

Wednesday, February 1, 2017

The Rhythm of Our School Days

In the morning, when the house is still silent, I curl up on the couch with my coffee and devotional, to spend a few quiet minutes studying before I give C his wake up call.

I open the blinds at the first sign of light, because even after almost 20 years in this house, I never get tired of watching the sun climb over the mountain.

Before long, I hear voices from the street, as our neighbors usher kids to the car, calling for people to hurry, honking their horns when the stragglers are unusually stragg-ly.  I remember those days, bolting awake at the sound of my alarm, rushing to get myself and C ready to head out the door. No matter how well I tried to prepare the night before, there was always something that demanded just a little more time than we seemed to have. Of all the things I miss about our old life, I don't miss that at all.

I finish my study and planning, then go to open the drapes in C's room. He gives me a one-eyed groggy smile, bids me good morning, and I let him know how much free time he has before we need to start our studies.

I fix breakfast and call C to the table, where he eats and I sip coffee in between reading from whatever book we're working through. Breakfast complete, C rinses his dishes and we head to the couch to takes turns reading aloud until we reach the end of the chapter. On particularly gloomy mornings we call on the warmth and glow from the fireplace to chase away the last chill from our toes before heading to the school room, where our books and schedule lay waiting for another day of learning.

We work through our task list, pausing as needed (but not nearly as often as we did in the early days). There is time for discussion about a movie we've seen, or want to, time for C to tell me about the artwork he plans to do once the school day is over. Some days are a hard, and we take lots of deep breaths and use positive affirmations, tapping, and encouragement to get through challenging assignments. Some days are easy and we find lots to laugh about. Every day, I am amazed at how far this young man has come, and how resilient he is. The world was not made for C, and my attempts to accommodate and adapt things for him are sometimes inadequate, but he never gives up.

This life is not easy. It's most of all not easy for C. But I'm so grateful to be the one doing life with him, so grateful that D works so hard to give us this time. Even though some days are exhausting and it feels like we'll never get another reprieve, I know we will. Some day, I'll look back at this time and wonder how in the world it went by so quickly.

Tuesday, December 27, 2016

My Child is Autistic. What Now?

I didn't cry the day C was officially diagnosed with Autism. I mostly already knew that he would be. I mean, there was a tiny part of me that hoped they'd say no, it was something else, something easily remedied, something that could be addressed and then filed away in his past. On the other hand, in my mind, Autism wasn't The Worst Thing ™.

The Worst Thing™ would be not having my son with me. I had faced that possibility and was given a reprieve when he was only a month old. Autism we would deal with.

I took to my blog (because that's what we did in 2007) and wrote a few lines about the diagnosis, my anger that he had another Thing challenging him, and my fear about where this new road would lead our family.  Someone commented (because that's what we did in 2007), with words that would be my lifeline in the weeks, months, and years to come.

She said, "Chico is still the same kid he was yesterday. His diagnosis doesn't change that."

Simple, yes? Profound? Yes.

The statement was profound for one simple reason. It was the opposite of the doomsday predictions we were getting from every side. Everyone from the Educational Psychologist to that Speaks group were highlighting all the deficits C was likely to have, the challenges he would surely face, and the milestones he was unlikely to reach. Fair enough... some of those things were true.

But that one mum of an autistic child was the only one who was reinforcing my suspicion that Autism was not the end of the world. Chico was (is) still the kid who'd sit with me and read a story, who was exhibiting the first signs of his artistic gifts, who loved splashing in water and watching Spongebob and playing on the computer. 

He was still here.

Ever since, I have tried to be that mom to other parents whose children are recently diagnosed. Before I offer whatever advice they are seeking, I make sure they know. Autism is A Thing. It is not The Worst Thing, or even a Terrible Thing.

If your child has been diagnosed, whether you were expecting it or not, whether you are fearful or not,  remember this:

Your child is still there. They are still the same person they were before this diagnosis. The things you love about them have not changed. Their lives have value. They will find happiness. They will have accomplishments. This road can be beautiful.

They (and you) can do this.

Tuesday, November 29, 2016

First Steps to Homeschooling a Special Needs Child

So, you've decided to homeschool. Congratulations! Before you can dive into the learning, there is some planning that must be done. Many years ago when I was getting started, I found it helpful to break my planning into blocks. If you find yourself feeling overwhelmed with where to begin, perhaps these planning blocks will be useful to you as well:

1. Know why you are homeschooling

There are days when homeschooling comes easy. You sit around the table, laughing and learning, and it's all just lovely. There are also days when homeschooling is very, very hard. There are challenging behaviors and attitudes, skills will seem to have vanished, and the weight of what is at stake will loom over you. It is on those hard days that you will need to remember WHY you chose to homeschool.

I homeschool because I believe it is the best way to teach Chico academics and life skills. He gets the benefit of a 1:1 teacher who is fully invested in his success. We have the freedom to modify lessons, location, and curriculum as needed. We avoid busy work and my time is not needed for other students, so our academic days can be shorter and 100% productive. We are not tied to the days and hours of public school; consequently, we can accommodate his medical care without lost time.

2. Research homeschool laws for your state
Homeschool law varies by state, so you must research what is required of you to stay in compliance with your state's regulations. Some states require notification, record keeping, testing, and oversight by a teacher. Some require nothing at all. I recommend beginning your search at HSLDA.

I happen to live in a state where we are not required to keep a yearly portfolio. I've chosen to do so, however, for a couple of reasons. First, we offer C the option to enroll in a community school several times a year, both to remind him that the option exists as well as to renew his commitment to learning at home. If he does choose this option at some point, a portfolio will show the school what we've been doing and where C sits academically. Second, if we someday move to a place where a portfolio is needed, it could be helpful to have a few years' records already in place. Third, it is a source of encouragement to us both to look back on where we started and compare to where we are now.

However much or little you decide to do for record keeping, just make sure that you are in legal compliance with your state of residence.

3. Formulate a plan for curriculum
As you will soon discover, there are a multitude of curriculum resources to choose from. You can choose an all-in-one boxed curriculum, books, and supplies, build your own by choosing a separate source for each subject, use online schooling resources, or a combination of the above.

To help you choose, it is useful to know how your child learns best. Does he grasp concepts mostly (or only) when there are visuals? Can he learn from being read to? Does he need to build and grasp and touch in order to assimilate information? Knowing these things will help you to choose curriculum that you will use and have fun with.

Among other resources, we have used and enjoyed Sonlight, Easy Peasy, Time 4 Learning, and Ambleside Online. Spectrum books, Scott Foresman Reading, and Math U See have all played their parts in our homeschool as well.

The best time to research curriculum is well in advance of when it's needed. Take time to research so that your child's strengths can be leveraged while his weaker skills are being built up.

4. Formulate a plan for therapies
If your child is receiving therapies at school, will you continue bringing them in for therapy? Will the school send someone to your home? Will you outsource these to a private provider paid by insurance or out of pocket? Are there community resources that can provide some of the benefits (like strength building or exercise) that therapy currently fills? Will you be taking a therapy break? Working out the logistics ahead of time will help with your transition to homeschool, especially if you decide to keep the local system as part of your therapy program.

5. Notify your school district (if required)
Once you feel mostly prepared (you will likely never feel completely prepared), you can submit the documents that are required and dive in.

Welcome to the world of homeschooling. It's amazing and challenging, and lovely and hard, and I hope you'll love it as much as I do. 

Tuesday, October 25, 2016

Practical Budgeting - Medical Edition

While I have to admit that I actually do enjoy the process of balancing our books each month, I understand that for most people, budgeting is a means to an end and simply something that must be endured to end each month in the black. This post is the first in a Practical Budgeting series.

Ah... budgeting! There's a lot to enjoy about this oft-dreaded chore. Who doesn't love to sit in front of the computer, bathed in the soft glow of a perfectly crafted spreadsheet? Who can resist the siren song of a sharp pair of scissors gliding through the latest coupons? Then too there is the artistic satisfaction of creating a neatly color-coded shopping list, complete with a menu plan and my patent-pending price match tags.

That I can then turn around and glean an overwrought, sarcastic blog post intro out of it is just the icing on the 50% off cake (bought with a coupon, natch).

Medical costs, especially for those with chronic conditions, can spell disaster for middle income families like mine. Budgeting to be able to meet those needs is absolutely critical.
 If you're struggling under the weight of medical bills, first of all, let me say I'm sorry. I know that health issues take a huge toll on a family, and that the last thing you need is stress about the cost. I've been there. I live there. I hope that what follows will be of some help  to you.

So... how can you manage the dollars while keeping your family healthy?

1 - Don't avoid the doctor.
When money is tight, it can be tempting to skip doctor visits. The problem is that cancelling routine checkups can allow small issues to become big ones, and new problems to avoid detection. It's okay to ask your doctor if a longer interval between visits can be managed, but keep up with the appointments that the doctor thinks you need. 

2 - Make sure all procedures are necessary for your case.
Often, a particular diagnosis will have a standard set of labs and tests attached to it. Sometimes, a condition can be successfully managed with modified set of tests. In Chico's case, talking with his doctor helped us to discover that 2 of the 5 labs that were normally run fell into the "nice to have" category but could be removed without compromising his care. The result was a shorter blood draw for C, and over $100 in savings each time labs were drawn. 

3 - Apply for any financial aid that is offered.
The hospital C goes to is a nonprofit entity. As such they are required to provide a certain amount of patient financial aid each year. Aid is income based, and our family doesn't normally qualify, but there are special circumstances that would apply if we had more than $2,000 in hospital bills for a given month. Even if you don't normally qualify based on income, make sure to contact Patient Aid in the event that you wind up with a particularly heavy medical bill.

4 - Consider the timing.
For non-emergency procedures, timing may work to your advantage. It might make sense to schedule costly procedures early in the year to meet your deductible early and maximize coverage for the rest of the year. If your clinic or hospital offers financial aid as outlined in #3 and you need several procedures, scheduling them in the same calendar month may help you qualify for some financial relief.

5 - Pay ahead, and utilize "cash" discounts.
This is especially helpful when you know in advance that your insurance company will not be paying any part of your bill. Our insurance company refuses to cover care at the hospital where C has been having labs drawn since he was a month old. Because of his autism issues, and the fact that they've provided him with excellent care, we've elected to self-pay for his blood work. I pay in full on the day of service, and the hospital is able to give me a 40% discount on the usual cost. I pay less, the billing department doesn't have to send a bill that will only be rejected, and Chico's continuity of care is preserved.

Are ongoing medical costs a part of your budget? Share your best savings tips with me below!

Thursday, October 6, 2016

Choosing to Homeschool - How Do You Know?

"How did you know homeschooling was right for Chico?"

This has to be in the top five questions I get about homeschooling. It's not surprising that people would find our choice a bit mystifying. After all, school attendance is taken for granted as a rite of childhood. It was our plan for C, once upon a time.

The answer is different for every family. For ours, it came down to four facts.

We were afraid for his safety
C had spent the first five years of his life either in the care of his parents or a trusted aunt who had been his nanny since he was three months old. We could count on one hand the number of injuries he'd had. Once he started school, it was one thing after another. He came home with bite marks and scratches. There were bruises on his neck, legs, and arms. There were goose eggs and cut lips, and more days than not he was crying when I picked him up If these had been the result of roughhousing or mishaps with the playground equipment, it might have made at least a little sense. But when I'd ask, it was always put down to something he'd done... banged his head, or scratched himself... thrown himself into furniture or onto the floor hard enough to bruise. These were behaviors that we never saw at home. After months of this,we found these explanations harder, and ultimately impossible, to believe.

The stress of school was impacting his health
Chico has a condition called Congenital Adrenal Hyperplasia. He nearly lost his life at a month old, has taken medication 3-4 times a day every day since then, and will do so for the rest of his life. Physical stress like fever, prolonged illness and injury require a special treatment protocol to ensure his survival. Mental and emotional distress are not quite so easily managed. We saw our boy going from generally happy to listless, withdrawn, and flat out angry most evenings. He was so beaten up from surviving the school day that he had no energy for enjoying what he'd previously loved.

He wasn't learning at school
We left C in his school program for as long as we did because we didn't know there could be another path for him. Our expectation that our child would go to school was only compounded by his Autism diagnosis. Surely it was in his best interest to be where the professionals could help him... right?  As time went on, we realized that the skills he had were the skills we had taught him. He made literally zero gains during his two years in school. And looking back, I can see why. The kid was using every single spoon he possessed just to get through the day. There was nothing left for new skill building. 

Once we learned the (partial) truth about his school days, we could not turn a blind eye
Chico spent two years in the public school system. The first was in a classroom for children with delays. The second was in a pilot program for children with Autism. Neither year was very successful in terms of academics, but there were a few happy days in his first year.

At the end of his second year, when it was time to organize a plan for how / where he would move on, I received some disturbing news about the practices of his school program. Our son was being subjected to treatment that we considered abusive, and we could no longer entrust his care to that system. To leave him in the program would have been meant granting them our approval, and we simply could not.

We could figure out an alternative path for academics. We could not send him back and risk his spirit being broken.

That's how we knew.

Wednesday, August 31, 2016

On Blogging and Privacy

I've been writing online for over a decade. When C was a little guy, I was searching for a "Motherhood" necklace and instead wound up finding DaMomma's blog. I'm sure it helped that I'd stumbled onto the page of a really gifted writer, but in that one instant, I was hooked. Far away from the village of women I'd grown up with, I felt like I'd found a community that I didn't have in real life.

Back in those dark ages of social media, the custom was to comment regularly on the blogs you enjoyed, preferably with a link back to your own web home. It gave us a sense of getting to know each other - kind of like sharing diaries back in elementary school. Feeling like I needed a calling card of my own, I started a blog describing my own experience as a working mom and Martha Stewart wannabe.

That blog (currently private, so no link) saw me through quite a few pivotal life moments. There was the struggle of navigating childcare and surviving working mom guilt. I wrote about the helplessness of living 600 miles away when my dad had a heart attack. I blogged and cried my way through my son's Autism diagnosis, how the school system mistreated him and our decision to teach him at home, and found my way to Autism pride and advocacy through the screen of my laptop.

I set privacy parameters in place from the outset. I used a pen name, and blog names for Chico and my husband, Q. I never gave details about C's struggles or named his teachers or schools. I sometimes wished I could, because reading those things had been helpful to me, but I just never arrived at a point where I felt like that was okay for my family.

Which brings me to today. I started Every Day a Rainbow because after more than a year away from blogging, I missed it. I wanted to share our experience with homeschooling a child with special needs to encourage other families. I wanted to be the one voice that assures a parent who's wondering "Could we?..." by showing that we are. I want to make people aware that restraint and seclusion are being used in classrooms every day, and it's unacceptable. Mostly, I wanted to share that this life we have, one that includes Autism, is a joyful one. We have challenges, but there is joy in every day that we have with our remarkable young man.

That the story is mostly his is not lost on me. If I share only part of what's happening in our world, it's because his part of the story is not  mine to tell. It wasn't when he was two (the year I started blogging), and  it becomes less so every year. More than my desire to encourage others is my obligation to protect my son. I hope that he'd find nothing in my online pages to protest, but if he does I'd remove it in an instant. For now I write with care, always truthful, but never obliged to include what is not mine to share.