hiatus

I'm taking a short break from blogging and other internet activities. Back shortly. Thanks for your patience.

CD review - Ralph's World

Have you met Ralph? We were introduced to Ralph when our daughter was about 6 months old. Some friends who live in the Midwest sent his CD to us. I remember putting it in the CD player in our temporary living room (we were remodeling at the time) and watching her bob along with the music. She had just learned to sit up, and I had no idea of the journey that was in front of us.

We listened to Ralph a lot while she was playing and I was doing whatever it was I used to do...She loved his music so much that I would often sing his songs to her while I was pushing her in her baby swing in the back yard. As her language delay became more evident we listened to even more music. Ralph was always a part of the mix. We had collected four CDs and a DVD by this point. She liked all of them, and it was definitely something that got her talking, "Sing Freddy Bear...sing!" Freddy Bear is the first song on Ralph's World, and it was love at first listen. All of the music is kid friendly without being hard for adults to listen to, if you know what I mean. Ralph does a good mix of original songs and childhood classics like the ABC song (then backwards) and Do You Know the Muffin Man. I still enjoy listening to all of the music and I have heard them many, many times. Really, it's good stuff. If you like the Beatles you'll like Ralph.

 I recall telling my daughter during her potty training (which was lengthy) that I would take her to a Ralph concert when she learned to use the potty. Well, Ralph doesn't make it to the West Coast very often. There were a couple of shows that we couldn't make it to, then after the twins arrived, followed shortly by our daughter's diagnosis the Ralph concert kind of fell by the wayside. Last January I got wind of another Ralph show happening in March just a few miles away. I got tickets for my daughter's birthday present and we went for a mommy and me date. She was so happy to get to meet Ralph in person, and even stayed after to give him a hug. We now have an autographed copy of Ralph's World. It was a relatively small concert, so Ralph did a lot of interaction with the children. He had them up on stage, down in the "mosh" pit, and running all over the auditorium, actually. I had worried a bit about how long my daughter would be able to sit in her chair and listen. I needn't have worried. I don't think a single kid there sat down the whole time. It was really fun.

One of the things I like most about Ralph, besides his music, is that many of his concerts are benefit events. The show we went to helped support policemen and their families. This weekend, Saturday 9/25, Ralph is back on the West Coast in San Francisco doing a show as part of the Kidaroo music festival. Proceeds from the show will benefit Yick Wo Elementary school. Back in the Midwest on Friday 10/22 Ralph will do a solo acoustic program to benefit the Jasper Against Batten Foundation, which fights a rare childhood disease. You can see a full list of his shows here (click on Tour Dates). He also does some "adult music" in his alter ego, Ralph Covert and the Bad Examples. So anyway, if you haven't met Ralph yet, you should soon. He's one of our heroes.

Sunday Digest 23

Time to share a few links that I've found over the last few weeks that seem especially important or inspirational to me.

1) I have really been enjoying Reports from a Resident Alien. This blog is written by a young woman who is on the autism spectrum and studies biomedical engineering in college. Perhaps it is my science background that connects here, but there is also a piece of me that sees a role model for my own daughter. At any rate, I am always interested to hear from individuals on the spectrum as I think they can teach us so much about how to best support others on the spectrum. Lisa's recent post about "stimming" is an excellent example of this. There are a lot of misconceptions out there about what stimming is and how it should be addressed by neurotypical individuals. I especially appreciated Lisa pointing out that neurotypicals use stimming too (ever find yourself fiddling with something in your hand while you are waiting for someone or having a challenging conversation?) and that there are ways to replace one activity that is too distracting or dangerous with another that is more socially acceptable or safer. This is a long post, but it is well worth the read.

2) And here's more from another favorite Lisa, at Lisa Leonard Online. She shared this story of her two sons interacting at school and how her younger son helped explain her older son's differences to some peers. We have not hit this milestone of sibling interaction yet. It may come sooner than I am ready. It is good to see that it can be a really positive interaction for all concerned.

3) I found this article about new genetic research on autism through OUR Journey Thru Autism (OJTA). The article gives some support to an idea I've been considering for a while: that there may be more than one (several even) root causes of autism that we currently lump into one disorder because the symptoms are similar. These root causes may be copy number variants (please forgive the typos in this link - it is the best layman's explanation of CNVs I could find) which I admit I do not fully understand. I have not formally studied biology since high school (um...) more years ago than I want to admit. CNVs apparently relate to the number of gene copies that an individual inherits. Usually you get two, one from mom and one from dad. Apparently sometimes in the copying process some mistakes happen - sometimes a gene is deleted and sometimes it gets stuck on the copier and you get three or four copies instead of two. Generally these mistakes are harmless and the resultant individual is not affected in any appreciable way by their genetic alteration. However, if, for example, key genes involved in neurology are affected then neurological disorders, like autism, may result. Please note this does not rule out the involvement of some environmental factor - perhaps there is something influencing the copying mechanism, or perhaps the genetic damage is "turned on" by some environmental influence. However, from my perspective as a person who studied how chemicals interact with biological systems, understanding the genetic processes involved in autism is key to identifying any environmental factors...otherwise we can chase multiple false leads and still not get to the right answers. There are simply too many chemicals out there that might be the trigger. Please don't say we should just get rid of all the chemicals. They are all around you...everything you touch, breathe, see, and eat is a chemical. I don't think you can understand the environmental factors without the genetic basis and vice versa...it is not an either or game, it is both and.

Still two links to go, and I think this is my longest "digest" yet...better find some breezy ones. :-)

4) Okay - I don't know about you, but I'm always looking for ideas of what to pack in my kid's snack AND lunch bags that have to go to school every day. She's a little picky about what she eats, but mostly she just doesn't care about eating as much as she cares about getting attention from other people, protecting her ears from the din of the lunchroom, and getting outside with time to PLAY! So lunch better be yummy, nutritious and INTERESTING! Tall order. I'll be checking out this list of snack ideas (and any others I come across) in more detail.

5) How about some music to lift your spirits? This arrangement of Crown Him with Many Crowns (1995) by Michael W. Smith gets me DANCING (and I don't dance...) every time I hear it. Enjoy!

Being Thankful in the Moment

About this time last year I started getting hints that things were not going well in Kindergarten for our daughter. It came through strange channels, and to be honest I still don't know the full story of what happened, but it wasn't good. Several meetings followed and after about a month we were back on track, though perhaps driving on the rumble strip rather than a true lane. We have noted for some time a pattern of "honeymoon periods" when she begins a new program...all the way back to early intervention days when they told me she was "just an angel" and did not see any of the behavior issues I had reported at home - that'll make you feel like a great mom (not!). At some point the honeymoon has ended and trouble begins and we have to remind everyone of what she needs. After a course correction of some weeks to months we get back on track. I have taken to warning everyone of this pattern. Last year the warning wasn't completely heeded, and this year (so far) I've been crying wolf.

We have worked really hard to make this year start off well for her. You can read previous posts about all the steps we've taken to give her the best start possible at her new school. And, so far it seems to have paid off. All credit where it is due, the school staff have really been stepping up for her. At home we have simply maintained our routines and not scheduled too much extra stuff.

It has left me in kind of a limbo, honestly. Usually by now in the school year I am scheduling meetings, firing off urgent e-mails, scrambling for ideas and trying to understand what is happening. This year I'm just enjoying the ride...with some apprehension. I like to tell people that I'm waiting for the shoe to drop and hoping it doesn't! Even if it does, it FEELS like it might not be so bad this time around. Still a piece of me hesitates even to put this out there into the ether because knocking on wood doesn't really work, if you know what I mean.

So the biggest lesson my daughter seems to be teaching me at the moment is just that. Seize the moment. Enjoy it. It may not last, but don't let the worry that it won't last be what defines it. Instead let the light and sunshine now help dispel the clouds that threaten the horizon. Just be. Just give thanks!

You can join in Thankful Thursday here!

Linear Movement - I Like!

I had never heard of linear movement until I read this post by Hartley. If you follow the link you'll see my comment there asking her what it is, and her answer - basically it is purposeful movement from one place to another. I immediately saw the value in this for my daughter. She has, in fact, shown me how powerful it can be. Some time ago when she first took on the job of putting away her own laundry she would make several trips from our living room where I generally fold laundry to her dresser. One trip for each type of clothing - pants, shirts, sock, underwear, etc. I always thought it would be easier for her if I put everything in a basket  in her room, but she wanted to make those trips. It helped her calm down and was very organizing.

***

Saturday we spent half of our day at church. I was working on reorganizing our Sunday School room which was topsy turvy after some recent renovations. We brought entertainment for the kids (scooters, a video, snacks, etc.) but it was still a lot of time in one spot with not much input from mom. They did well on Saturday. Sunday was a different story for our daughter. Surprisingly she did not protest going to Sunday School, but during Sunday School she had a hard time self-regulating (intel from the teacher) and after Sunday School when she learned that we needed to stay a while longer so that Dad could attend/help run a business meeting she approached meltdown. Shouting, grabbing toys, you name it. Then once we were ready to go home she started resisting again. The ride home was not pleasant. Fortunately we've arranged seats so that she has her own row in the van, but she found some things to torment the person in front of her (me.) Fortunately I was not driving. We needed to stop and fill the gas tank which was just going to prolong the agony. By divine intervention (I think) the first gas station we stopped at was out of order...all of the pumps were out of order...how often does that happen? So we decided to go to one closer to home. As we approached the gas station I received some inspiration...linear movement. I told my husband that when he reached the gas station my daughter and I would get out and walk the rest of the way home. It was a distance of about six blocks. We walked at her pace. We did not talk. I made minimal eye contact just to make sure she was safe. It worked well. By the time we were home she had regained her equilibrium. And it gave everyone else (even me) a nice break, too.

Between a social skills class we did over the Summer and some strategies at school we've been slowly building a repertoire of activities that help her re-regulate and we're putting her in charge of them. I think linear movement needs to go in the box...but I need a kid friendly name for it. Any suggestions?

This post is participating in the Moms' 30-Minute Blog Challenge at Steady Mom.

Taking it to the Next Generation

A couple of years after we got married, one of my husband's clients sons started a rock band. We had a lot of fun going to a couple of their early shows, and were surprised by how good they were. They are still going strong, writing more songs, doing more shows, and maturing their own style. I don't make it to a lot of rock concerts these days (hmmm...) but I just might have to make space on the calendar for one of Scraping for Change's upcoming shows.

Our friend posted this on facebook the other night:

We, Scraping for Change, will be playing a stripped down show at Oak Grove High School in San Jose on Friday, October 15. This is a benefit show put on by the Academy of Life and all proceeds go to high school kids with disabilities...

 $10 tickets for dinner and a rock-n-roll show and it all goes to help out teenagers with special needs. I call that cool advocacy, and taking the mission to a whole new generation.

If you are in the San Jose area and interested in the show you might want to check out:

• The Scraping for Change website (also linked above)
• A sample of their live music from YouTube (the song is called Breaking the Silence, and is the title of their new CD.)
• Oak Grove High School
• Academy of Life (hopefully I will have a link here soon...

In Awe of Jochebed

You remember Jochebed, right? Her name is listed in Exodus 6:20 as the wife of Amram (who?) and the mother of Aaron and Moses (oh, him!..you know, the Ten Commandments.) I am preparing a Sunday School lesson about the story of Moses as a 3-month old baby, and while the lesson focuses on how God protected Moses and will take care of us, too, as a Mom I started thinking about what Jochebed must have been thinking and feeling.

The events take place toward the end of the 400 years of slavery for the Hebrew people in Egypt (ca. year 320.) The Hebrew people have been thriving, at least reproductively, in spite of all their hard labor. The Egyptian rulers fear that they will become too numerous and rebel, perhaps joining forces with one of their enemies, and so they enforce a strict population control method. First they order the midwives to kill all the male children, but the midwives do not comply, and God blesses them by providing them with more work, more Hebrew children are born. Then a strict edict comes down, "Every boy that is born [to the Hebrews] you must throw into the Nile, but let every girl live." (Exodus 1:22, NIV)

Back to Jochebed: She already has an older daughter (Miriam) and son (Aaron, approximately 3 years old at this time). She gives birth to another son and chooses first to hide her newborn. After a few months it becomes clear that she can't safely hide him (colic, perhaps?). She decides to follow the letter of the law if not the spirit. She gets a basket, covers it with tar and tree sap to waterproof it, and puts her son in the reeds of the Nile. She leaves Miriam to watch over him. I wonder if she placed him strategically. The Bible doesn't say how much time goes by before the Egyptian Princess comes to the Nile to bathe, hears the baby crying and rescues him from the reeds. Miriam steps up and asks if the Princess would like a Hebrew wet-nurse. With the Princess agreeing to this idea Miriam runs home to get her mother. So Jochebed's intelligence and faith are rewarded by being able to raise her son until he is weaned and adopted into the royal Egyptian family.

I find myself wanting to emulate Jochebed. In particular, she must have fully entrusted her son's life to God. There were any number of dangers that could have brought death to her tiny baby as she placed that basket in the Nile. I suppose crocodiles, drowning, dehydration, and starvation are among likely hazards to a baby floating solo on the Nile. Putting Miriam there to watch over him is almost another evidence of Jochebed's faith. Surely she didn't expect Miriam to watch her little brother's demise. She must have been expecting something good. She came up with a creative solution to extend her boy's chances at life as long as possible.

No one's asking me to throw my children into the Nile, but they do have to go out into a culture and a society that runs counter to our values, beliefs, and practices. Even those who home school, control their childrens' media and Internet exposure, and eat only home-raised organic food cannot completely remove their offspring from this World, nor should we, I think. Jesus said that His followers are "in the World," but "not of the World," (John 17:11 and 16, respectively.)  I am stretching my faith, shaping spiritual "baskets" around my children, choosing a good spot to launch them, and watching to see what God will do. For me, this is a process that will take years, while Jochebed had just a few days, hours even, to literally send a newborn into the unknown. Next time I start to worry about my childrens' future I will remember Jochebed and her faith.

This post is participating in the Moms' 30-Minute Blog Challenge at Steady Mom.

CHARGE...

...is another name/acronym that I've been seeing around the Special Needs on-line world and knew very little about before starting to research this post. It is a complicated syndrome that affects one of every 9-10,000 births worldwide. CHARGE stands for:

Coloboma of the eye (see below)
Heart defects
Atresia of the choanae (see below)
Retardation of growth and/or development
Genital and/or urinary abnormalities
Ear abnormalities and deafness

This name was developed in the early 1980s when medical professionals began to recognize a group of individuals who all shared a similar array of medical and developmental issues. The acronym summarizes the issues and although some changes have occurred in diagnostic practices, the name stuck. CHARGE is based on characteristics that are common in CHARGE but rare in other conditions, and minor characteristics that are present in other conditions, are more objective or occur later in life. For example:

Coloboma of the eye (malformation, like a cleft, of one of the parts of the eye) occurs in 80-90% of CHARGE individuals, and isn't generally associated with other medical conditions. It can also be observed early in life. Coloboma is considered a major feature of CHARGE.

Heart defects occur often in CHARGE (75%) and are often complex, but may be caused by other medical conditions and are therefore considered a minor feature.

Atresia of the choanae - The choanae are the passages that lead from the back of one's nose to the throat. In CHARGE these are often blocked or closed (atresia) by a membrane or bony obstruction. This occurs in 50-60% of CHARGE individuals and is also considered a major feature.

etc...

In the end no one characteristic is considered definitive for CHARGE, and an individual affected by CHARGE may not have several characteristics that another individual with CHARGE may have. Similar to autism each individual becomes their own unique blend of medical and developmental issues.

Great strides have been made toward understanding the genetic causes of CHARGE. Mutations in one gene, CHD7, have been linked with CHARGE. CHD7 encodes a regulatory gene that turns other genes on and off. Mutations to this gene are evident in 2/3 of individuals with CHARGE, but the testing is expensive and has many false negatives, so further research is needed before genetic testing can supplant clinical diagnosis.

Often individuals with CHARGE have both vision and hearing loss ("deafblind") and since these input channels are primarily used in educational settings, learning can be a major challenge. In this respect CHARGE reminds me of one of my biggest heroes, Helen Keller. Although Ms. Keller's deafblind-ness had a different cause, the fact that she overcame these obstacles and became one of our country's most admired writers, speakers, and humanitarians. I recall shortly after confirming our daughter's speech delay I read Ms. Keller's autobiography and was greatly encouraged to never give up in seeking ways to communicate with her. Individuals with CHARGE have many challenges, but in the end we must respect their tenacity to overcome and provide the support and acceptance they deserve.

For more info on CHARGE, see The CHARGE Syndrome Foundation

Book Review - Shepherding a Child's Heart

I had a choice tonight between reviewing something I'm really enjoying or reviewing something I've been struggling with for months. Can you guess which one I picked?

Shepherding a Child's Heart is a classic in Christian parenting circles. It is considered by many to be THE way to raise your child. I have started in to read it a couple of times now, and I just can't seem to make it fit my world. A dear friend recommended it to me the moment I shared with her the good news that we were expecting our first child. I find myself in agreement with the foundations of many of the ideas Dr. Tripp lays out in the first part of the book, that a child is shaped by internal and external influences, and that external behavior changes are not sufficient to raise a child up in the way they should go. Rather a change of heart is required.

I'm struggling with two areas:

First - Dr. Tripp's methods seem very "talk" oriented. Meaning there is some expectation that you will lay out the child's choices, the consequences of those choices, and explain that you are performing your duty as a parent before God to shape your child into the person He wants them to become...etc. Please don't misunderstand, we do use choices, and consequences, and we do remind our daughter often that we are here to help her, but we do so in as few words as possible, and almost never during an actual behavior incident. Talking to my daughter when she is misbehaving is like pouring gasoline on a fire. It rarely defuses the situation. I have a hard time translating Dr. Tripp's approach to our situation.

Second - Dr. Tripp is pro-spanking. I wish I could say I've never spanked my children. (Sorry, Mom...) There was a period of time where that was our default consequence. My husband and I were both raised in households where that was a norm (and we turned out okay...) In our household, however, it was pretty scary for all concerned, to be honest. At the time we were under the impression that our daughter was "strong-willed" (which she is...) but we did not understand that she is also autistic. In the end I think that combo will serve her well, but between the ages of 3-5 it wasn't pretty. It was a vicious cycle...we were telling her repeatedly not to (hit, kick, bite, pull hair, etc.) but the punishment was a spanking (in her mind a hit...) so what kind of example is that to her? I found myself begging God to show me a better way, and I believe He answered that prayer in the form of a series of positive behavioral support workshops that my husband and I were blessed to take. Not that we haven't had our moments of frustration, but overall our home is much more peaceful, functional, and healthy. My kids are not little angels, but I am occasionally complimented by strangers and friends alike on how well-behaved they are. They know I have firm boundaries, and that fun times will end if those boundaries are crossed, but spanking is now a last resort, end of the rope...used in response to clear defiance, particularly on a safety rule. [Please God, don't let there be a test on this tomorrow!]

It's kind of sad, in a way, because Shepherding a Child's Heart was the book that got me started on this whole blog idea. Wouldn't it be cool, I thought, to translate those Christian parenting ideas to the special needs world? Yet here I am giving the most negative review I've written yet...still working on it I guess.

What books have you used to shape your parenting journey?

This post is participating in the Moms' 30-Minute Blog Challenge at Steady Mom.