Saturday, August 29, 2009

Rainbow Riders

Here is another great organization serving special needs children that can use some help. Located in Monmouth, Illinois, the Rainbow Riders Therapeutic Horseback Riding program gives special needs children the thrilling experience of riding a horse, but the experience does more than just boost self-esteem. The movement of the horse "provides healthy exercise while improving the riders strength, circulation, muscle tone and sensory integration." Each client is given an individual therapy plan developed in partnership with education and medical professionals. The most amazing piece to me is that Rainbow Riders charges at most 14% of the actual cost to provide the therapy to the clients. Some clients even qualify for paying only $1 per session (0.7% of cost) due to financial needs. The remaining costs are all defrayed through tax-deductible donations and volunteer efforts. Check out some inspiring photographs here and then:

  • Donate - Rainbow Riders receives no government funding for their program. They rely on donations and grants. All donations are tax-deductible. You can sponsor children or horses at varying amounts.
  • Volunteer - If you live near Monmouth, Illinois, Rainbow Riders would welcome your donation of time. They say no horse experience is needed.
  • Spread the word - twitter, facebook, digg, whatever your social media of choice I'm sure Rainbow Riders would appreciate the shout out.
  • Research - If you don't live near Monmouth, Illinois, but you are interested in helping a similar organization, check out the North American Riding for the Handicapped Association (NARHA) website to find a certified center near you.

P.S. I realized after posting this that I should also point you to my friend Janet Ann Collins' blog where she recently posted a review of children's books about this type of therapy. Although I've been seeing referral lists, advertisements and articles about equine therapy for over a year now, I'm sure that reading Janet's post at least subliminally nudged me to post about Rainbow Riders when I was choosing my topic. I do so love to give credit where it is due...

Wednesday, August 26, 2009

Book Review - Hands Are Not for Hitting

In a perfect world, reading "Hands Are Not for Hitting" several times with my daughter would have resulted in her learning to only use her hands to be kind and take care of herself and others. Alas, it is not a perfect world. I do think reading this book with her was a step in the right direction in helping her understand that hitting is hurtful, that other people don't like it, and that there are other things she can do when she is angry or scared. I also think it accomplished a somewhat different goal in teaching her some things she can and should do with her hands, like give or receive a high five, blow a kiss, shake hands, and help with chores around the house. We always have to stop and practice these while we are reading, especially the high fives. I think it also is useful for those really hard days when she has been overwhelmed socially and is unable to restrain her aggressive behaviors. We often pull it out on those days to help her talk about the incident in a way that helps us understand what triggered her behavior. Then we can better support good behavior when a similar situation arises. The pictures are all beautiful and illustrate the situations, actions, and solutions in positive ways with a diverse set of children and adults depicted. Just about the only thing I might change is the phrasing of the title. In keeping with our attempts to use positive phrases to address behavior we try now to say, "We always use gentle hands." There is also a board book version for younger children, and this title is part of a series of books that cover similar social/behavioral topics. We've been happy with all of the books we've used, though we do not have all of them. The cover I've photographed from our home library is different than what is now on Amazon, so I guess there is a new edition out, I hope that is not confusing to anyone. Enjoy!

Sunday, August 23, 2009

Sunday Digest 6

1. This time of year all sorts of kids are starting all sorts of new activities, but when I saw this article at 5 Minutes for Special Needs, it really made me think. How brave that this mom is helping her child do something that many might say she should never do. How sweet that her big brother is coming alongside to teach her and encourage her. What a great example to all of us!

2. I can relate to this post at Blissfully Domestic. I can't tell you the number of times I've been mid-tug-of-war with my daughter and God hits a little bell "Ding! This is how you sometimes look to Me, but I still love you!" It happens most commonly when she is begging for something that I want to give her, but just can't yet (like juice right before dinner). I'm asking her to wait and she just keeps begging. Listening to God's little bell helps me respond in a more loving way.

3. Researchers at UCLA seem to be making headway in developing a program to teach teens with Autism Spectrum Disorders (ASD) how to make friends. Seems like great news! I want to know if they can do the same with a five year old. If so, sign us up! I don't want to wait eight years.

4. In case you are wondering or don't already know, ideally this is how the whole Individual Education Plan (IEP) is supposed to work. Reality...well... (By the way, it looks like this article originated in Iowa, so "Child Find" may not exist in your state. I've never heard of such a program in California...)

5. I have been curious for some time how autism and other special needs are affecting developing countries. This post on Hopeful Parents answers my question and shares about an organization that is directly working with parents in these countries to help them learn strategies to help their children. Amazing.

You can see a list of Sunday Digests (and other posts) here.

Thursday, August 20, 2009

Learning Peace - Fruit of the Spirit Part 3

I must say I have not learned peace directly from my child. She is rarely peaceful unless she is asleep (yes, we are blessed that she has no sleep disturbance issues) or mesmerized by a television show. Even with the latter she often bounces around the room as she is watching. When she is happy she is very, very happy, and when she is sad, well, you probably don't want to be around. Rarely is she neutral on a subject. Passionate would be an apt description. Peaceful, not so much.

And yet, on the whole I am a much more "at peace" person now than I was before mothering this child for five years. I still see room for growth in this area, but I will follow my mantra of looking for progress rather than recording a milestone even as I assess myself.

I am most definitely a type A personality, bordering on OCD at times. I love routines and expected outcomes. I thrive in order, quiet, and cleanliness. Although my daughter also thrives in these conditions, she is not able to maintain them in her own power and often thwarts my attempts to supply them for her. Six years ago this sort of chaos-producing meddler would be not only unwanted but unacceptable. So how, you may ask, am I coping and even at times thriving in the middle of the mess. I admit that a pixie face, and big brown eyes framed by the longest eyelashes you've ever seen may contribute to my lengthened fuse. The bigger answer, though unbelievable even to me, must be that God has slowly but surely been teaching me a little of His peace.

I have been learning to let the little stuff go. We recently had to give our daughter a drastic haircut to compensate for a trim job that she decided to give herself. The woman who did the haircut actually called me the next morning to make sure I was okay because she was so sad to have to take off so much hair to get a decent looking cut. I was unfazed. I was chagrined the first moment I saw what my daughter had done, but I almost instantly shrugged it off. It is just hair. It will grow back. Everyone says she looks cute with this haircut, and even if she didn't it is just not worth getting upset about.

I have been learning that even the big stuff will eventually be righted if we press on with what we know to be best for our child. Since January I've gone from almost despairing, to quite hopeful, to questioning, and now even more sure that the methods we are using to support and train our daughter to overcome her challenges will eventually succeed. Not that there won't be more challenges, but I have seen the power of calling in resources and working hard together to find solutions. There will be valleys of shadow, and there will also be pinnacles of success, and through it all there will be the hard work of making good choices for our daughter.

I have been learning that God will supply what we need. Be it strength, resources, money, time, energy...we have to rely on Him because our own well will run dry.
Jeremiah 2:13 - "My people have committed two sins: They have forsaken me, the
spring of living water, and have dug their own cisterns, broken cisterns that
cannot hold water. (NIV)

He may not give us what we want, and we may have to wait what seems like an impossibly long time, but in His time He will provide what we need.

God is using my child to teach me His peace, because He knows how desperately I need it.

Monday, August 17, 2009

Back to School Parent Report

My little girl is starting Kindergarten in just over a week. I have mixed emotions of pride and trepidation as I prepare to send my oldest into what may prove to be her biggest challenge yet. A good portion of the Summer, for me, has been all about preparing for this next big move. One of my favorite pieces of the transition plan is what I want to share with you in this post. I did not come up with this idea on my own. One of the parent support groups that we've been active with posted this tool on their website. The idea of a Parent Report is to introduce your child to their teacher in writing. It lets you communicate who your child is, what their specific needs are, what their strengths are, and various techniques or strategies that work best at home and may translate to a classroom. It also lets you express thoughts about confidentiality and advocacy that are otherwise hard to communicate. I added a picture of my daughter, plus one of some artwork that she did (see above) and one of her more creative dress up outfits. If you follow the Parent Report link above you'll be taken to a page where you can download a template for a report. Customize it for your child and hand it over to your child's teacher at the earliest possible opportunity. I tweaked the format a little bit, and wrote about each of the following topics:

Overview - 2 sentence introduction
2008-2009 School Year - what her Early Intervention Program looked like
Summer 2009 - where we travelled, summer activities and therapies
General challenges - important points that didn't fall neatly into other categories
Developmental Issues - specific diagnoses and areas of challenge
Recommendations - things that have worked successfully at home or in previous schooling
Typical day and home life - an outline of her day
Home Program - what we do as a family to support her
Confidentiality vs. Community building - do you want total privacy or do you want to help advocate not only for your child but for other special needs children, or something in between?

Our report ended up being five pages. On the one hand it seems like a lot for someone to read, on the other hand it hardly seems adequate to summarize the complex individual that my child is. If nothing else, it helped me solidify my own ideas of my best hopes for this first year of formal education. I hope it will be helpful to you as well.

Friday, August 14, 2009

Autism Health Insurance in New Jersey

In these heated health care reform debate days, I found this article quite interesting. Several states are putting regulations in place that require insurance companies to provide coverage for diagnosing and treating autism. I found this link for a list of states that already have some policy on this issue. It is more than a year old, but has some good information. Aside from the diagnosis process being so subjective and confusing, the lack of coverage for diagnosis and treatment is my biggest frustration with the medical aspect of autism. We are now assured that autism is understood to be a medical problem; it is diagnosed, generally, by people with an M.D. after their name, and yet medical insurance providers duck responsibility. Their subscribers have paid premium upon premium assuming that if some devastating diagnosis ever came their way they would have insurance to help handle it. I am generally not one to ask for government intervention, and the more I hear about the current health care reform proposals the more frightened I become. However, I am no fan of insurance companies either. I suppose the thought of covering the medical needs of children who require therapy in several different domains over years and years due to a condition that is increasingly common and ill-understood leaves the executive boards of insurance companies shaking in their money-grubbing boots. I wonder if they could consider how it feels to face that same scenario as a parent with an average income, other mouths to feed, and the nagging feeling that the number of people on your side is small indeed. We know that children with autism do better with earlier and more intense intervention. In the end the early investment in therapy will probably save money down the line, but I'm not sure this is how they do the math. In any event, this is a topic that I'm going to be keeping my eye on.

Tuesday, August 11, 2009

God's Joy - The Fruit of the Spirit Part 2 cont

This Joy, His Joy
Grows and grows
This Joy, His Joy
This Joy, His Joy
Sets the captives free
Thank You, Lord
For giving it to me

When I was thinking about writing this post, this simple chorus came to mind. It is one of several songs that my parents used to sing in the car when we were on long road trips, in the days before DVD players in the car. The tune is catchy - I wish I could hum a few bars for you - but most importantly the message is profound. The Joy that God will provide for us if we will simply ask is: growing and alive, abundant, and has the power to set us free.

"Hear the word of the LORD, O nations; proclaim it in distant coastlands: 'He who scattered Israel will gather them and will watch over his flock like a shepherd.' For the LORD will ransom Jacob and redeem them from the hand of those stronger than they. They will come and shout for joy on the heights of Zion; they will rejoice in the bounty of the LORD - the grain, the new wine and the oil, the young of the flocks and herds. They will be like a well-watered garden, and they will sorrow no more. Then maidens will dance and be glad, young men and old as well. I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow. I will satisfy the priests with abundance, and my people will be filled with my bounty," declares the LORD. Jeremiah 31:10-14 (NIV)

This is not a well-known passage of scripture, but it exemplifies these three characteristics of God's Joy.
  • Growing and alive - God promises His bounty to His people as a source of joy. Grain, new wine, oil, livestock will liken Israel to a well-watered garden.
  • Abundant - God promises that His people will be filled, they will dance, even their mourning will be turned into gladness
  • Liberating - the LORD will rescue His people from circumstances beyond their control and stronger than they are
The chorus ends by thanking God for giving me this Joy. Indeed I need this joy and would be grateful to God for giving it to me, so how do I get it?

Many are asking, "Who can show us any good?"
Let the light of your face shine upon us, O LORD.
You have filled my heart with greater joy
than when their grain and new wine abound.
Psalm 4:6-7 (NIV)

When I said, "My foot is slipping,"
your love, O LORD, supported me.
When anxiety was great within me,
your consolation brought joy to my soul.
Psalm 94:18-19 (NIV)

These verses teach me two things about receiving Joy. First, it seems to come in the midst of trouble; when everyone around us is asking, "Where's the good" and when our feet are slipping in fear, God's Joy comes in. Second, it comes with intimate, close, consistent relationship with God. When His face shines on us, His love supports us, and He consoles us with His Joy.

Saturday, August 8, 2009

Take Flight for Kids

I found this article late this evening, and I am wishing I had read through my google alerts a little earlier in the week, but alas, we'll have to wait for the next Take Flight for Kids event. It looks like these happen on some scale throughout the year. How many children do you know who've had the opportunity to fly a plane? Add the qualification of being a special needs child and my guess is the number falls pretty near zero, unless, that is you have been to one of these events around the Bay Area. The event is totally free to families who attend (up to 5,000 people!) and includes BBQ, aircraft displays, live entertainment and the chance to fly a plane. You can imagine that sponsoring an event like this requires a lot of money and a lot of volunteers, including skilled pilots.

Visit the Take Flight for Kids website to:
* Make a donation - $10 sponsors a family's BBQ lunch
* Volunteer to help run the event
* Volunteer as a pilot
* Become a sponsor or exhibitor at the next flying event

Help provide a once in a lifetime experience to a special needs child.

Wednesday, August 5, 2009

Book Review - Don't Call Me Special

I am always interested in books that help children understand disabilities in other children. One of the first things I did after learning our daughter's diagnosis was to write a social story for her peers to try to help them understand her challenges as well as to assure them of the things they have in common with her. I checked with our library to see if there were books already published with that goal in mind and our excellent children's librarian provided me with a long list of books to look for. I was especially pleased the other day to see "Don't Call Me Special" sitting on the "NEW" shelf in the children's section of our library.

I like the artwork and the text in this book. It is geared toward younger children (I would guess ages 6-8). Some of the vocabulary and concepts may be challenging for the audience, but this story should be read with an adult anyway as the beginning of a conversation about accepting and being helpful to children with different abilities. I definitely enjoyed the way they present various disabilities and how everyone has some things that are hard for them so it is okay to be different and unique.

I am struggling a little with the title, and the pages that explain it. "Today many people with disabilities dislike being called special because it makes them sound too different from everyone else." I guess this harks back to the days of totally separate "special education." Although I do, more than ever now, understand the need to be careful about the labels that we attach to people, my understanding is that the currently most accepted term for disabilities is "special needs." If we are to ban the label "special" then what terminology are we to use? I think this will be particularly confusing for children. I know some people don't like the term "disability" because it makes it sound like they can't do anything. Differently-abled was popular for a while. It's a touchy subject and one that I fear may never be completely resolved because no matter what term is applied there is bound to be someone who is offended by it.

The only other thing I found a bit strange is the text at the beginning of the book. It seems to jump in a little too quickly. I found myself turning back a page to see if I had missed something or if two pages had stuck together.

Otherwise I think this is a great conversation starter for peers, siblings, and extended family members of children with special needs.

Other book reviews:
A Regular Guy
Handle With Care

Sunday, August 2, 2009

Sunday Digest 5

1. I spent this afternoon making a weighted blanket for my daughter following directions I found here. For those who are not familiar with these, they are used by individuals who have sensory processing disorders to help provide calming input to aid the person in sitting calmly and quietly for a longer period of time. I am not a seamstress by any stretch of the imagination. In fact I had to dig out the book for the sewing machine to remind myself how to wind and load the bobbin, and how to thread the machine. However, using the instructions above I made a decent looking 4 lb. blanket. It was also not too expensive. I used an old flannel pillowcase that we weren't using for one side of the blanket, and bought a textured baby receiving blanket for the other (I figured some tactile input built in might be a good thing). I also bought some poly-pellets (for the weight), and some iron-on decorations. I'm not sure if this method would work for heavier blankets. My arms are quite tired from holding the blanket on the machine, but for a little lap blanket it was so easy and did not take too much time (maybe 7 hours total). My daughter was so excited that she actually helped make the blanket by running the foot pedal and helping put some of the beads in. Overall a very satisfying experience.

2. I have a birthday coming up this week and I'm feeling quite old. This Summer has really worn me out physically and emotionally. Yesterday I saw this give-away at Hopeful Parents, and wanted to let other special needs moms know about it. I know I tend to put my kids' needs first so much that taking care of myself, much less pampering myself with a new handbag drops way down on the to-do list. Enter for your chance to win this custom reversible bag by 1154 Lill Studio. Very chic, and roomy enough to handle all of your "extra" kid gear.

3. I've been following Specialgathering's blog for several weeks now. Earlier this week there was a post/comment discussion about appropriate worship for special needs members that I thought was really significant. The church spends a lot of time talking about making worship appealing to our culture and whether or not that is a good idea. This community of special needs adults is considering how to best meet their special needs culture in worship, and it seems an important step in the right direction to me.

4. School is starting soon. A friend of mine is planning to home school her two oldest children this year for the first time. We at one time were interested in home schooling, but given our daughter's special needs didn't think it possible. According to this article there is a subset of home schooling parents whose children are autistic. I'm still not sure it would work well for our family, but if you are interested there are some resources listed there.

5. And beyond school, "What do you want to be when you grow up?" perhaps a conversation starter for you and your special needs child. I think at last report our daughter wanted ME to grow up to be a firefighter...I'll have to see what she says now...

You can see a list of Sunday Digests (and other posts) here.


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