Puppy Love

We spent some time in the last week taking care of a couple of dogs for one of our neighbors while they were out of town. It was a lot of work, but also a good experience for my daughter. She now knows how much time and energy goes into really caring for a dog. Exercise, feeding, cleaning up after them, she helped me do all of these each day. I was surprised (and yes a little chagrined) when at the end of all of that work she was still telling me that she would like to have a dog. For now I am putting her off. I've given her a definite date far in the future that she can ask seriously about getting a dog. She already has worked out what color she wants it to be, what gender she wants it to be, and she has even picked out a name. Heaven help us.

I've posted before about the use of assistance dogs for children with autism. If and when we embark on the adventure of dog ownership I would love to find an animal that is suitable for use as an assistant, or at least one that is therapeutic, with a calming and regulating effect. All of this thinking about dogs made me really excited when I found this link to a story about the Lions service club which is now training service dogs for children with autism. The Lions have been involved with training service dogs for visual and hearing impairment for 25 years, but due to increasing rates of autism they have added a program to train dogs to meet this special need. You can check out the website for the Lions Foundation of Canada Dog Guides here.

According to their website there are plenty of ways that you can get involved:

• Make a donation - The Lions Foundation receives no governmental assistance.
• Adopt a puppy - Literally or figuratively. For a donation of $100 you can help defray veterinary care for a future guide dog and receive a certificate commemorating your assistance. Future guide dogs also require special training and socialization in their first year and the Lions Foundation uses foster families to provide that environment for their dogs. You can learn more by looking at the...
• Opportunities page - where both paid and volunteer positions are listed, along with application form links.
• Also check out the wish list.

Book Review - When I Feel Angry

After a day like today I need this book almost as much as my child does. I love the title. It is so realistic. It doesn't say "If I Get Angry" or "When I Am Angry" or "I Shouldn't Get Angry." This book assumes, rightly, that your child will feel angry; it emphasizes that this is a feeling, not a state of being; it even acknowledges that there are times when anger is a fine response. However, it encourages positive ways to work through the anger - taking deep breaths, getting some exercise, or finding something fun to do (distraction!).

I hope I modeled this well at least once today. We were decorating Halloween cookies and my daughter really wanted some of them to have spider webs on them. In my rather limited decorating repertoire this was going to be challenging at best, plus the cookie decorating was supposed to be a structured activity to keep her busy while I was making dinner. Anyway I attempted the spider web but the decorating trip clogged and my attempts to clean it out didn't help. Meanwhile dinner was waiting on the stove and the twins were dancing at my feet wanting attention, too. I said, pretty calmly, "I'm going to have to stop working on cookies now. I'm getting too frustrated." Then I turned my attention to dinner. My daughter was a little upset that we had to stop, but while I finished dinner we processed it a little bit and I emphasized that sometimes when we are getting frustrated we need to take a break.

The story book follows the adventures of a cute little bunny girl as she realizes that some things that make her angry can't be fixed, but some can. She learns to get help figuring it out and to spend time talking and listening to work things out. The pictures are all darling. The text, in my opinion, is written at a great level even for children with language processing issues. The ideas take a little practice to remember and act on in the heat of the moment, but they are all solid re-regulating ideas.

Enjoy!

Sunday Digest 9

I don't think I ever realized what a big deal Halloween has become until now that we have a child who is truly old enough to want to participate. This year she will be a ladybug again...wearing the dress up costume that a friend of ours gave her about 3 years ago. It still fits (barely) so I told her this is probably her last year to be a ladybug. Last year I convinced her to do something different and spent hours working with her to transform a produce box into a little orange car. This year...I don't have the energy for the convincing or the crafting. Anyway...here's some halloween prep for you, special needs style:



1. Feeling crafty? This spider (or rainbow kitty) from Magic Marker Monday on 5 Minutes for Special Needs looks pretty easy to make. I'm thinking googly eyes instead of the tea light even easier and just as cute. The original version is here.



2. Lots of tips, costume ideas, safety notes, etc. I especially liked the wheel chair costumes link. Fred Flinstone - how fun!



3. As Christians, Halloween can be more than a bit controversial. To attempt to represent several sides of the issue, consider the scholarly approach. Or...



4. Perhaps the "no harm done" approach. Or...



5. My personal favorite, the turn it on it's head approach. [You'll need to scroll down quite a ways to the November 3, 2008 post, "Halloween on Oak Street"]

Goodness Gracious Child - Fruit of the Spirit Part 6

First I want to apologize for not being able to post this as scheduled yesterday. For some reason I could not log in to Blogger. Actually I couldn't even get to the log in page of Blogger. So to clarify, although the date of this post says Friday, it really is a Thursday Learning from our Children post...and continues in our series on the Fruit of the Spirit. Now back to our regularly scheduled program.

Once again I find myself in the midst of a mystery. How can a child with behavior problems be teaching me about goodness? This requires a little research. Let's go back to the Greek and see what Paul is really talking about here. The Greek word is agathosune (ag-ath-o-soo-nay) and guess what it means: goodness, virtue, beneficence. It comes from the word agathos (ag-ath-os) which means good, benefit, or well. All right then, what exactly do we mean by the word good. In this world of moral relativism, what does good mean, anyway? For such a small word, it seems it is hard to wrap it in a nice neat package. According to the En Carta World English Dictionary (1999) there are 33 uses or definitions! Here are three that jumped out at me when viewed through the prism of a child with special needs:

When used as an adjective:

• indicating that something is approved of or desirable
• having the appropriate qualities to be something or to fit a particular purpose
• worthy of honor or high esteem

This is a paradigm shift. Did you catch it? If not, re-read the bullets then continue...
Goodness is not a characteristic generated by the individual. Rather it is a gift bestowed by the observer. To be specific: in the end it does not matter how many tantrums my little girl had today, the key is how I view her. Do I approve of her, find her desirable, remember that she was created for a purpose, and consider her worthy of esteem? These are my choices, not hers. I can choose to call her good when I remember how God looks upon me. Every person bears His image. Each of us is marred in some way by sin - our own and others' - but when He looks at us He sees Jesus. God knew that we could never be "good for" our debt of sin...we could never pay the penalty of not meeting His standard of "good - having or showing an upright and virtuous character" all the time. So He sent Jesus to cover our debt, and when we accept His payment He no longer sees the debts, just that Jesus paid it all. I can choose this same attitude toward my daughter. I can choose to see her goodness as a fellow image bearer of God. This really could change everything.

Taking Care of Yourself

One of our family's favorite things to watch on television is nature programs. I recall watching an episode of a show (I think it was one of the Most Extreme shows where they explain the habits of ten amazing animals) that talked about animal mothers who basically give up their lives so that their young can live. I remember being horrified at the process and wondering what broken strand of fallen nature had brought this about. Then about a year ago, a short time after learning our daughter's diagnosis with ASD, and while still nursing twins almost exclusively (no milk or formula) I commented to my own mother that I was starting to relate to those animal mothers. I felt like each week I was giving up a year or so of my lifespan, and I wondered how much longer I could keep up that pace. Things have improved since then, but I still find myself putting my own needs at the bottom of the list of things to take care of. Two months ago I started actively putting an end to this practice. I wanted to share several of the lessons I've learned along this journey.

• Do something significant just for you at least twice a month. I started attending my writing group again each month, and I also developed a list of deferred self-care items that needed to be addressed. I've prioritized them and intend to deal with one item on that list each month until I'm back in the habit of taking care of myself.

• Find windows in each day that you can slow down and regroup. Today I ran to the grocery store to pick up a few things and dropped off the dry cleaning. My husband was able to keep an eye on the kids while I was gone. This always makes the errands go a little faster, but at the end of the grocery run I realized I had been going full tilt all day long and I really needed to take an extra minute or two to prepare mentally for the rest of our evening. I popped a new CD into the car stereo and nibbled on a small treat I had succumbed to in the check out lane. It wasn't much, but those few minutes of just letting myself slow down rather than racing home to jump into dinner preparations, laundry, and dishes was key to handling all of those tasks with more grace and humor.

• Set boundaries on activities that are draining. The last few days have been very hectic for our family - school events, church events, swimming lessons, meetings, etc. which has been leading to short nights, and long, busy days. When I mentioned that tonight was a blog post night my husband suggested that I should take a sanity break...how fitting for my theme! This blog, however, is a commitment and I don't want to get off my three day schedule, so I decided instead to take up Steady Mom's 30 minute blog challenge. I usually write rather quickly but then spend time tweaking and fine tuning until everything is just so...who knows how much time I usually devote to a post, but Jamie suggested setting a timer to 30 minutes to put a definite end point on "screen time" and increase "face time" with those we love. In my case I think the increase will be in pillow time!

• Take care of your physical self. When was the last time you had an eye exam, a dental check-up, an annual physical? Are there aches and pains you are ignoring until (fill in the blank) happens? I spent 5 hours in the dental chair last week because of that kind of procrastination. Lesson learned.

• Take care of your spiritual self. When was the last time you had a steady quiet time with God, a fixed appointment with Him to read the Bible, pray, listen to the Holy Spirit? I've pretty much always struggled to keep faithful in this, but am finding it an essential component of my day now that I've re-started the habit.

Must close...my timer is about to beep and I have to at least spell-check...you get the idea. You will only give excellent care to your special needs child if you are taking sufficient care of yourself, too. It's important. Make it happen!

Autism and Epilepsy Brochure

A couple of days ago the Daniel Jordan Fiddle Foundation (DJF) published a brochure on the connection between epilepsy and autism. The pamphlet is available as a PDF and is available for download and distribution free of charge. Epilepsy is one of many co-conditions that can be found in people with autism. The brochure summarizes current population data on how often the two conditions coincide. It also provides facts about autism and epilepsy, discusses various seizures, what they look like, how bystanders should respond with first aid and medical attention, etc. I think this is a useful resource for anyone who is often around children with special needs where you are more likely to see a seizure first hand. Would you recognize it? How would you respond? The DJF is a national organization that advocates for adolescents and adults with autism by providing grants that provide maximum integration with society.

God's Kindness - Fruit of the Spirit Part 5 cont.

God's kindness leads you toward repentance...Romans 2:4b (NIV)

This fifth fruit of the Spirit is a hard balancing act, if you ask me. On the one hand we want to be loving and generous toward everyone around us, and on the other hand we don't want to be foolish or careless in bestowing resources where they will be misused or abused (casting pearls before swine). The verse above, to me, is an amazing picture of this. God's kindness is bestowed on us at a time when we need to repent, but in the process of receiving God's kindness we want to change. Let's look at the context:

You, therefore, have no excuse, you who pass judgement on someone else, for at whatever point you judge the other, you are condemning yourself, because you who pass judgement do the same things. Now we know that God's judgment against those who do such things is based on truth. So when you, a mere man, pass judgment on them and yet do the same things, do you think you will escape God's judgment? Or do you show contempt for the riches of his kindness, tolerance and patience, not realizing that God's kindness leads you toward repentance?" Romans 2:1-4
(NIV)

There seem to be three key thoughts here. First, when we judge others we condemn ourselves. Have you ever noticed that the things that annoy you in other people can often be traced back to something you do yourself? There are several things that I get frustrated with in my daughter only upon reflection to realize that I do the same thing, simply in a more grown up manner. She procrastinates undesirable tasks until they are unavoidable sometimes forcing a confrontation. Anyone else around here doing countdowns at their house? It wears me out. Yet here I sit at a desk filled with papers that probably should have been acted on, filed, or discarded weeks ago. Who, indeed, am I to judge?

Second, God knows who we are. He is the final, honest, all-knowing judge and if we see something we don't like in someone else, we'd best ask Him to examine our own heart as well. Even if that particular sin, vice, attitude, habit, or character flaw isn't present, there is undoubtedly something else lurking there. I have a theory that the longer one walks in paths of faith the more subtle the lurkers are. Things that a new Christian would not even notice can be the biggest issue that an older saint is working on with the Lord. In His eyes, all things that are not holy and from Him are sin and keep us from Him. He is not pleased and He cannot tolerate the presence of such things in the hearts of His beloved and so...

He is kind to us. At another time in my life I might have finished that thought differently, but there it is. He wants us to change, to become ever more like Him, and so He demonstrates kindness. While we were still sinners, He died for us. (Romans 5:8). He guides us into all truth. (John 16:13). He patiently waits for us to come to repentance. (II Peter 3:9)

Since God's spirit can provide this fruit of kindness in me if I rely on Him, the effect I should see on others is that they, too, will be drawn to repentance as I live out the kindness I have received toward others.

Adventure for Autism

There's nothing like a 25,000 mile bicycle ride to get things rolling. That's Adam Biel's theory anyway. With the statistics on autism now saying that 1 in 91 children age 3-17 has an autism spectrum disorder it's time! Starting in Alaska June 25, 2009, and eventually covering a good bit of the western hemisphere in a year and a half to two years, Biel hopes to raise $40 per mile. He also has extended layovers planned in some cities to work with local agencies to help raise funds. With a background in business (B.S. from University of North Carolina, Chapel Hill; internships with banking and consulting firms) this pet project gone wild will undoubtedly be a success.

Here's how you can help:

Visit adventureforautism.com and click on the Help AfA post-it-note. Biel welcomes a night in a warm home rather than sleeping in the tent he carries on his bike. A night in a hotel room is appreciated, too. AfA also suggests organizing an autism awareness bike day if Biel rides through your area. You can check out his route at the above link.

Visit L'Arche an organization in Canada (and worldwide) that works to integrate people with disabilities in society and Pathfinders for Autism a parent-initiated organization based out of Maryland. The funds Biel raises will support these two organizations. Check them out. See what else they might need.

If nothing else, help spread the word. Our media market hasn't picked up Biel's story yet. With all the doom and gloom we're hearing these days wouldn't you like to hear some good news? Tell all your friends on facebook or twitter to join the adventure.

Book Review - the elephant in the playroom

I am just finishing my read of this heartwarming collection of stories compiled by Denise Brodey. I didn't know quite what to expect when I checked "the elephant in the playroom" out from our local library, but I have been thoroughly hooked in by all of the stories. The book is a compilation of stories written by parents of special needs children with a variety of physical, social, and emotional challenges. Some of the stories are simply cathartic - they let me open the floodgates of emotion (anger, grief, worry, frustration, awe) and set aside all of the logical business-like thinking that I find myself trapped in sometimes as I try to advocate for my daughter. It let me reconnect with my mom-ness and set aside the case manager hat. At the same time it is inspirational. One story ("My Friends Are Waiting for Me" by Rebecca Stern) describes the family's journey to find an excellent school program for their son, Caleb. They eventually placed him in a Reggio Emilia school founded by two women who are proponents of inclusion. It sounds like Caleb, who is diagnosed with autism, is thriving in this program. I can't help but wonder if it would be a good program for other children with similar needs. Some of the stories give hope, others seem like unending tales of despair and yet acceptance. All of them offer something that I can relate to. With the exception of a couple of special needs support groups that I've found, I rarely feel like I "fit in" with other "regular" moms. If they are chatting about their children and I mention that my daughter does something similar to their child it is as if the conversation takes a sudden chill. As if because she is atypical she can't do some things just like other kids. Reading this book made me feel as if I had found a new circle of friends. Granted I may never meet them in this lifetime, but perhaps there will be a special corner in heaven where we can all meet and greet.

I also think this book might help "regular" parents understand the world of their friends or family who are "special" parents. They might find some of it hard to believe, but they also might learn a thing or two about how to support their friends, or at least not to judge them.

I close with a quote from one mother who summed it all up quite nicely:

I read in a book once that having a child with special needs is like
getting on an airplane for a trip. You think you are going to Venice, but then
the stewardess tells you you have landed in Holland. Well, you can spend your
time crying for the gondolas, or you can get out and enjoy the windmills. It's
not quite what you had expected, but it is beautiful all the same.
So I call him my Dutch boy. To remember that windmills are as beautiful as
gondolas.
He fills my world with wonder and unbelievable joy.

Sunday Digest 8

Today's digest is all about prejudice, hurtful attitudes and words; and how they can be overcome both in ourselves and others. Enjoy!

Two reminders to be careful about how we use our words:
"Why it Hurts" by Renee at 5 Minutes for Special Needs
"When Adults Use The R-word" by Tammy at Praying for Parker

And another about how hard it can be to know whether to disclose in advance, or explain afterward:
"To Tell or Not to Tell, That is the Question" by ShashK at 5 Minutes for Special Needs

An inspiring story about overcoming prejudice and social barriers through education:
"Speech pathologists, other educators bring autism expertise to Bosnia" by Theresa Harrington in the Contra Costa Times

And finding serenity:
The 12 Steps and Autism at Understanding my son

Childlike Kindness - Fruit of the Spirit Part Five

It might be surprising to read that you can learn a lot about kindness by spending time with a child with social skill delays and behavioral issues. In some ways it is perhaps like looking at the negative of a photograph (back in the day when photographs had negatives). Before having a child with special needs I had never spent a lot of time thinking about how to be kind to people. As a child there were only a couple of instances I can remember (not counting rivalries with my older brother) when I was deliberately unkind to another child; and most of those were self-defense related events. I'm not claiming that I have a lot of skill in this arena - I've always been a bit of a loner, but when I do interact with people I am generally accommodating and thoughtful. Learning to specifically teach social skills to a child, however, has highlighted so many fine points of human interaction that I hadn't really thought about before.

For example, my daughter is engrossed by the idea of birthdays. I may have mentioned that this is one of her favorite pretend play scripts. I've had several "birthdays" this year, and we must always have special pretend food, the birthday song, and lately also birthday crowns. Although she clearly enjoys birthdays, there are some finer social points that we've had to explain in great detail. I've listed some of these below.

• When it is her turn - When she was younger we wrote a social story about birthdays explaining that she only gets one each year, but that it is still fun to help friends celebrate.
• Choosing the gift - that it should be something the birthday person will like, and that she will not get a gift every time we give one to someone else.
• Not being the center of attention - letting the birthday person choose how to celebrate, open gifts, blow out candles, be sung to, etc.
• Social niceties during the party - saying please/thank you, sharing, taking turns, saying goodbye to the host(ess).

Although these all seem obvious to a normative brain, spelling them out and explaining them to a child that struggles to make sense of it all reinforces the importance to me. Kindness is taking joy in celebrating with others, considering what others need or want, focusing on others, and being polite to a fault.

The other piece of kindness that having a special needs child highlights is how unique we all are, and how each of us deserves some level of individualized care. The best example of this that I can share here is the contrast in interactions between my daughter and two of her friends. My daughter and one of her friends were riding their bikes around on our patio and he was having some trouble navigating some of the turns and obstacles. Because she was following him she would have to stop while he worked his way around the tree branch or the bump in the sidewalk, and when she tried to start again she would "grunt" a little at the effort of moving the pedals on her bike from a dead stop. He interpreted this "grunting" as yelling at him and became quite upset. She, of course, did not undertand why he was upset and continued to grunt and yell until we had to end the play time. The other boy can give as good as he gets in this regard - I have watched my daughter and this boy argue back and forth about whether or not bugs can talk, and if she gets loud he does, too. Unfazed. My point is that the subtlety of needing to treat one friend with more sensitivity than the other goes so far beyond my daughter's skill, and yet it has been a lesson to me. Am I sensitive to what other's need, or do I proceed with a cookie-cutter approach to friendship. One friend needs phone calls, the other hates phone calls but loves facebook. Am I flexible enough to work at meeting those needs rather than expecting them to bend to mine?

Kindness is other-focused, other-driven, and not mass-produced. I close again with a children's song that I learned when my daughter was just a baby. As I watch her garden grow I tend my own a little more closely.

Kind hearts are the gardens.

Kind thoughts are the roots.

Kind words are are the flowers.

Kind deeds are the fruits.

Take care of your garden,

And keep out the weeds.

Fill it up with sunshine,

Kind words, and kind deeds.