Sunday Digest 22

My list of blogs that I follow has been slowly expanding and is now over 20 in number. I follow some general parenting blogs, some special needs parenting blogs, and a few blogs specific to autism. I barely can keep up with these, and most of them don't post every day. There is just an amazing amount of "stuff" out there on the internet just waiting for us to find it...amazing. This is just the cream of the crop I've sampled over the last three (or so) weeks...There is pretty much of a back to school theme here...wonder what's been on my mind!

1) This first entry is a little older than three weeks, actually. I don't think I had space to post it last time. This is a blog entry written by KatyB who blogs at Bird on the Street, and contributed this piece to 5 Minutes for Special Needs. I think as the back to school season has ramped up I've been reading a lot from special needs parents who are wondering if they've done enough over the Summer, or wondering how they will do it all in the season to come, trudging along on the treadmill and questioning their ability to keep up. Katy reminds us that It's Enough.

2) Our Journey Thru Autism is kind of a newcomer to my list. I really enjoyed this post by Chynna Laird about supporting children with sensory processing issues (which can be present in many different disorders) through transitions. Transitions are still our biggest sticking point, and most of the time I'm not even thinking of the issue as a transition when it really is. I particularly like Chynna's reference to a "plan". This is a term our daughter picked up in her Summer social skills group, and wow is it powerful...I'll probably post more on this later...

3) Hartley's Life with 3 Boys posted this prayer for back to school. Oh yeah, there really is still prayer in and for school.

4) My mom told me about an interview on NPR with a young woman who is autistic. From there I found Reports from a Resident Alien and this post, which says so much. A person's value is intrinsic, not tied to their ability to contribute blah-de-blah to society. People are important, they just are. Get over it.

5) Okay, so this one is about Sunday School, but... a lot of churches follow the school calendar in terms of moving students into different classes, reconsidering curriculum, etc. Our church has a pretty high per capita special needs contingent. I taught Sunday School this morning and two of the three kids in our class today have special needs. We currently use "homemade" curriculum, because we are small and flexible like that, but if your church is considering developing a special needs class or needs some special needs curriculum, SpecialGathering reviewed Special Buddies by LifeWay here. And yes, I have used special too many times in this paragraph...

Sometimes It Is the Little Stuff

I'm sure that the custodian thought the floor was pretty clean. I'm hoping my daughter wasn't collecting glitter off the floor when she was supposed to be listening to her teacher. Still I couldn't help but be enchanted this afternoon when I picked her up from her second day of first grade at her new school. She walked out of the classroom and said, "Mom, I brought you some treasure." As she opened her hand I expected to see something, and had to blink a few times at her apparently empty hand. Luckily the sunlight glinted off of two tiny particles of shiny-ness, one pink and one blue. "Did you work with glitter today?" I asked. "No, I just found these on the floor for you. Put them somewhere safe so you won't lose them." We agreed to put them in my hard shell glasses case, which I figured would be easier to retrieve them from than any other place, just in case she quizzed me on their whereabouts later. We almost lost one just trying to transfer it to the case. A couple of things fascinate me about this...

First - who would notice a couple of flecks of glitter on the floor AND take the time to collect them AND "keep them safe" AND choose to give them to Mommy as treasure. Just MY kid, that's who. How many beautiful things do you walk right by every day? When you do notice beauty do you find a way to share it with someone? One of my favorite new blogs to follow is Lisa Leonard Online. She is a special needs Mom who publishes a lot of photography and makes beautiful jewelry. A lot of her photos are simply noticing beautiful things and capturing them in a creative frame. I need to step back from my "get it done" attitude and take some time to enjoy the touches of beauty that surround me more often...and then share them somehow.

Second - you may wonder why I played along...why encourage this kind of odd practice. There are several reasons. See my first point, above. I need to stop and enjoy little things, and my daughter sort of forces me to do so. It's a gift. Also, I know that giving "treasure" to people is one way that the child expresses love and affection...She's not real big on hugs, kisses, or mushy speeches. Instead she gives me her treasure. I'll take it. Lastly, by going along with this little scene she stayed calm through a transition (big deal!) and was able to reconnect with a peer who had helped her out earlier in the day. Priceless!

So I encourage you to seize the glitter. Gladly accept it from another's hand or stop and find some of your own. Either way it will bring joy to your heart.

Giving Yourself some Grace

We just returned from two days of camping (half a day in the rain!) - preceded by one day of packing and followed by two days of cleaning up and digging out. Notice the gerund tense of cleaning and digging - I still have plenty to do on those fronts, starting with the mound of laundry that needs to be folded, sorted, and put away.

On Wednesday our dear little girl will begin her first day of first grade at her new school, a step that we have been preparing for almost 5 months. Today was partly consumed by formal orientation-type events to seal the deal.

Last week I had high hopes that by this evening everything would be in perfect order and I'd be happily entering a post about camping adventures with your special needs child or capping off the getting ready for a new school series. Instead I'm sitting here with a half-finished grocery list for groceries that should have been bought this evening after my littles were safely asleep, and instead will be bought tomorrow morning before everyone starts begging for breakfast (I hope!) As hard as I've been working for the last week or so, I quite simply over-estimated my ability to keep up with the treadmill that I'm on.

So here is my practical tip for today:

Every once in a while you need to give yourself some grace, some space...whatever you want to call it.

• Stop pushing for it all to be done perfectly, because, well, you'll end up as a heap on the floor behind a treadmill that will keep right on running.
• Scale back. Find the items on the to do list that can be done as a shortcut without doing any harm.
• Procrastinate. If you can't do it all today, find the one thing that can be done tomorrow (or the next day) without missing a deadline or making life harder for yourself then.

I'm going to practice what I'm preaching...finish this grocery list and hit the hay. Won't you join me in spreading a little grace around? Permission to punt and/or procrastinate granted!

This post is participating in the Moms' 30-minute Blog Challenge at Steady Mom. You can head over there to meet some pretty fabulous Mommy bloggers...Total time for this post 15 minutes!

Time for a Break!

I will not have internet access for a couple of days. I thought about pre-writing something to post tomorrow, but...well I'd rather go make rice krispy treats and tacos (yes, really). I'll be back Monday. Talk amongst yourselves...

The Power of Friendship

I have been greatly rejoicing in my friends recently. We had the pleasure of hosting several friends who came to visit over the Summer. Two "college days" friends of my husband came to visit, and one of my friends that I've known since graduate school also stayed with us for a couple of days. Each visit had its own flavor, and each one was special in its own way. These are friends that we don't get to see often, and every minute with them is worth its weight in gold, if minutes can be weighed.

Last week I took my kids on an adventure to San Francisco. We rode the local light rail system (BART) with a more local friend and her kids. We walked by the Ferry Building and then up to Yerba Buena Gardens, which is (ahem) a bit of a hike for six kids and two moms. Along the way I lost (well to be accurate I inadvertently abandoned) my backpack - which contained many important items including my purse, my car keys, and our return tickets on BART. When I realized it was probably back by the Ferry Building I looked in horror at my friend and just said, "Can you take the kids?" She replied, "Call me if you need anything." (She didn't even chew me out for my absent-mindedness!) In between kicking myself all the way back to the Ferry Building and praying to God for a miracle, I marvelled at the strength of a friend who would in the bat of an eye take on my kids in the middle of a crisis and offer more help if needed. If you want to know the end of the story: the backpack was there, untouched, unharmed, slightly warmer from a nap in the sun, and yes my estimation of the honesty of people in general did go up just a pinch. My belief in answered prayers...well!

On the other side of the board, we have several friends that are hurting. Their reasons are personal and even without putting names to them it feels wrong to give details, so let me just say there are half a dozen people around us experiencing truly traumatic life changes and conflicts that are potentially overwhelming. I'm not talking about hangnails here. I am a bit of a "fixer" and it agitates me to no end to know I have friends with problems that I can't fix for them. I can dispense hugs, I can "take their kids" so to speak, I can spend time with them and encourage them, but I can't fix it.

Proverbs 17:17 says, "A friend loves at all times,/ and a brother is born for adversity." (NIV)

The Hebrew word used here for brother is 'ach (awkh), which can mean literal brother, but is also used in the sense of "brother by choice, ally, companion, or colleague." (Strong's Concordance, 251; and Vine's Bible Dictionary) In other words, people were made to stick together - through lost backpacks and high water. We are meant to support and encourage one another.

There's another quote out there on Facebook that grabbed my attention this week, "Never make someone a priority when they just make you an option." It sounds good on the surface, and probably is at some level sage advice, but after thinking about it a minute I thought to myself, "I'm glad Jesus didn't buy that bumper sticker." Speaking only for myself, I made Him "an option" for a long time before I realized how He made me (and the whole world) a priority.

John 15:12-14 (NIV) - Greater love has no one than this, that he lay down his life for his friends. You are my friends if you do what I command. [emphasis mine]

Romans 5:7,8 (NIV) - Very rarely will anyone die for a righteous man, though for a good man someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. [emphasis mine]

I hope, as with all things, that when it comes to friendship I can have the attitude of Christ.

Albinism

It is kind of amazing how these Saturday "primer" posts are working out. When I first started them I thought I would have a hard time deciding which special need to write about, but amazingly I keep meeting people or hearing about various conditions, disorders, etc. that become quite interesting to me. Today's post is no exception to this trend. Earlier this month I had the pleasure of meeting a young woman who has albinism or hypopigmentation. It doesn't slow her down though, literally. She runs track (sprints!) and cross-country (distance!) and I saw the rows of medals that she has earned. I learned a lot just by meeting her, and wanted to know more.

I'm sure like most people I've gotten my information about albinism from television shows and the like...I pictured a person with white skin, blond-white hair, and of course pink eyes. It turns out that is a myth. There are different kinds of albinism, and depending on which kind an individual has they may have only slightly lighter hair and skin than their family members, and their eye color can be anything from pink (rare) to light brown or hazel. Most have blue eyes. Albinism is a genetic disorder that affects 1 in 17,0000 people in the United States. The main two symptoms of albinism are vision problems that cannot be completely corrected with glasses and skin that must be carefully protected from sun exposure to avoid skin cancer. There are two broad categories of albinism: oculocutaneous albinism (OCA, eye and skin) and Ocular Albinism (OA, eye).

OCA can be further broken down into sub-categories depending on what specific biochemical pathway leads to the hypopigmentation. Most are related to a breakdown in the system that turns tyrosine (an amino acid) into the pigment melanin. There are several proteins in that biological pathway, and if any one of them breaks down, hypopigmentation will result. In one particularly severe form, at least eight different genes are affected. This disorder is called Hermansky-Pulak Syndrome (HPS) and is associated with poor blood clotting, facile bruising, and lung and bowel diseases. The mutated genes for OCA are on autosomal chromosomes (not the X or Y chromosomes) and are recessive. If neither parent has albinism, then in order to have offspring with the disorder, both parents must carry the OCA mutation and each offspring has a 1 in 4 chance of inheriting OCA.

In the case of OA, the genes are X-linked (again!) so a mother carrier can pass on the disorder to her sons with a 50:50 chance for each birth. Daughters might also be carriers with a 50:50 chance.

Some of the vision problems commonly associated with albinism include irregular horizontal back and forth movement of the eyes (nystagmus); crossed, lazy or wandering eye (strabismus); sensitivity to bright light, astigmatism, misformed retina, optic nerve misrouting, and translucent iris. Some of these issues can be addressed with surgery and corrective lenses, but may not be completely rehabilitated.

Learning all of this about albinism reminded me of my past life. I used work as a lecturer at a major university teaching organic chemistry. One of my students had "low-vision". I do not know the cause of her vision problems, but it sounded similar to the challenges faced by individuals with albinism. Organic Chemistry is a very visual subject. It helps to see the various shapes and connectivities of molecules in order to understand how and why they react. Even students with normal vision have trouble retaining all of the information and learning all of the drawing conventions. That doesn't even consider the lab work which often involved looking for color changes or other visual clues that a reaction was complete before moving on to the next step in the experiment. We did several things to accommodate this student's needs, but it took us a while to figure out the best ways to help her both learn the material and be able to accurately display her knowledge on exams. There are audio textbooks, but these seemed challenging at best to follow as someone described in pedestrian verbiage the structure of each molecule. Besides, professors often don't really teach from the textbook, so we provided enlarged copies of all of the lecture notes, and we audio-taped each lecture. For exams I would take a regular copy of the exam away from campus (risky, but less risky than on campus) to Kinkos and personally enlarge each page to the size of a poster. (You have not lived until you've learned to run this kind of photocopier...and you have not been truly stressed until you go to your favorite Kinkos to do this the day before the exam and find that their machine is out of order and they're not really sure where the closest one like it might be...then consider riding the bus to campus, crammed in with all sorts of students, with a copy of an exam that the average person could read from across the room, oh it was fun!) This would allow the student to see the exam herself rather than having someone else read it and describe it to her, but it was exhausting for her to piece together a mental picture of molecular structures from the individual flashes she perceived. We allowed her as much time as she needed, and frequent breaks, all with a personal proctor who was carefully instructed on how to support her during the exam without assisting with any of the answers. I wish I could say we had a perfect system from the beginning but in truth it took several semesters for this student to meet the standards for the course. We generally considered the first time through each half of the course as a "dry-run" just to work the bugs out. We were all so pleased for her when she finished. I've never seen a student work harder, and I've never been more stretched as an instructor to meet the needs of a student. It is one of the most memorable periods of my teaching career. I have lost touch with this student, sadly, but I think I learned as much from her as she did from me. I think it helps me as I parent my own child with special needs to be more empathetic with school professionals who, for the most part, are stretching to meet my child's needs. We may not get it right the first time, but we'll keep trying hard.

To learn more about albinism, start here:

NOAH (The National Organization for Albinism and Hypopigmentation)Hermansky-Pudlak Syndrome Network

Book Review - The Way I Feel

I haven't had much time for reading lately - I'm caught up on all my blog subscriptions, and that's about it. So I thought I'd review a children's book today. The Way I Feel by Janan Cain was the first book I spied on our coffee table that seemed most appropriate for a Simple Life shout out.

The cover pretty much says it all. This book is well written and well illustrated for children like my daughter who have "BIG feelings." There is seldom a mediocre tone happening around our house. With two two-year-olds testing the waters and a child that struggles to self-regulate we have drama in every corner. From pretty normal sibling squabbles over whose turn it is to play with THE coveted toy (in a house overrun by toys, by the way) to ecstatic spinning and laughing as we careen around the house before Mom makes us go outside (and that's just the first half hour of the day) we've got emotions coming out our ears. Really.

The fun thing about this book is that the characters in here have BIG feelings, too. "Positive" and "Negative" are given pretty equal showing. Silly, scared, disappointed, happy, sad, angry, thankful, frustrated, shy, bored, excited, jealous, proud, are each represented and respected with a diverse and expressive group of kids. In the end:

"Feelings come and feelings go.
I never know what they'll be.
Silly or angry, happy or sad -
They're all a part of me!"

I think reading this book has given my daughter some emotional vocabulary beyond "happy, sad, and angry." I hope by continuing to read it she can learn to match some of the facial expressions to the emotions. Regardless I'm glad for the simple message that feelings, no matter how big they are, should be expressed, but in appropriate and expected ways.

As a bonus (as you can see from the excerpt) the text is written in rhyme - without any stretch or strain to make it work. The illustrations are colorful and beautiful. I have been very pleased to have this one in our library.

Have you read this one? What do you think? Drop me a comment below!