Persistence

There are very few things in my life that I've made a conscious choice to quit - my Ph.D. Chemistry career being one of them after more than a year of trying to juggle that with being a mom to a child who it turns out was not a typical baby. Generally once I've set my mind to doing something it is going to happen one way or another. It has been a good thing, for the most part, to be so stubborn, or to put it nicely, persistent. It is one piece of my character that I'm happy to see I passed along to my daughter. Although at times it can be annoying (like when she's asking for a cookie right before dinner time) her strong will is going to be a key ingredient in overcoming her challenges and being all that she can be in spite of them. I've been thinking about this a lot for the past couple of days after watching her through a couple of gymnastics classes.

These classes are challenging from the get go - happening at the end of a six hour day of school, and with a somewhat awkward transition home, eat snack, get ready, go period. The environment is noisy, busy, and full of bouncy children and adults speaking loudly to be heard above the din. They don't always give instructions near her or with direct eye contact or in short one step phrases, so I see my daughter looking at the other kids to see what they're doing as her method to "do the right thing." With all of this already challenging her system I watch her do physical activities that a year ago she was unable to even begin. At the most recent class she was supposed to hop on one foot from one hula hoop to another for a length of about 20 feet. She got tired at the end and missed a few or had to land with both feet, etc, but this is a child who a year ago could barely stand on one foot for 3 seconds. She is working hard at these sessions and I'm proud of her desire to do well.

I have to be careful as I watch the other children in the class. I don't know their stories. They look fairly typical, but I know the folly of that cursory exam. Still it bothers me to watch them goofing around and not really trying at all to do the various activities well. The contrast is amazing to me. Rather than being irked at the rascals that don't seem to give a rip I'm trying to focus on praising my daughter's persistence. It's her story I know from first breath to tonight's good night kiss. We're working toward a happy ending for this one.

Reclaiming the Sparks with your Spouse

Call this one more of a goal than something that I have mastered. Valentine's Day is coming. I just did a quick search for statistics on how well marriages for parents of special needs are faring. Unfortunately I couldn't find any well-documented studies. It seems there is an 80% divorce rate figure that is thrown around a lot without any reference...All I can say from personal experience is that after a long day of supporting our child through getting ready for school to getting ready for bed, perhaps with a meeting at school and some research on a new support tool thrown into the mix, not to mention the rest of my "mommy" duties. There's usually not much left to be "wifely" with. My strategies to date are small steps in the right direction to maintain at least a tenuous grasp on romance in the midst of running the race:

• Do the small stuff: My husband likes muffins for breakfast - I bake them. He also likes home made cookies. I write a note on the napkin in his lunch bag when he is working away from home.
• Occasionally make a larger effort: We are planning to sneak away for a couple of hours this weekend to watch a movie in a real theater.
• Make time to talk: Lately the best time for us to talk is when we're all in our van on a 20 minute or so road trip. We are fortunate to have a DVD player in our van which can usually keep the kids distracted while we chat. Spousal e-mails only go so far.
• Worship together: Nothing brings us closer than sitting in God's presence together.
• Work together: Probably the biggest change for us in the last year was taking a class together and learning new strategies to help our daughter. Prior to this we at times had opposite approaches for addressing our daughter's behavior. While we still have our individual ways of working with her, we are more united in our end goal and have more common vocabulary for discussing issues when they arise.

I have a lot to learn in this area...if you care to educate me, feel free to leave a comment below. (Unless you're a spam-bot which has been happening a lot lately...)

This post is part of the Moms' 30-Minute Blog Challenge.

Of Stories, Questions, and Mistrust

Some time ago I published a piece about the new statistics that show that 1 in every 110 children in the United States is on the autism spectrum. Within the week two different people suggested that we should try the Gluten Free Casein Free (GFCF) diet for our daughter. While I respect people who have made that choice for their child's treatment plan, it has never seemed to fit our particular situation. Nonetheless I decided for the purposes of writing this blog I should perhaps do more research into that approach. I am just at the beginnings of my investigations, but it seems I am looking into this just as the controversy has reached a new peak.

Late last week (Jan 28) a British medical board chastened Dr. Andrew Wakefield who initially published a study finding a link between the Measles Mumps Rubella (MMR) vaccine and the occurrence of autism. The board found a variety of ethical problems with his study. The vaccine is generally given around 18 months of age when some forms of regressive autism appear. This form of autism is particularly devastating because the child has often been completely on track developmentally - walking, talking, socializing, and then these skills diminish and the parent feels they have "lost their child" to the disorder. I cannot imagine how heart-breaking this experience must be. In our own story we can see symptoms of sensory processing problems and motor skill issues back to newborn days. It seems to be the way our child was wired from the beginning, which doesn't make the symptoms any easier to handle, but we have never known her to be any other way. People who suspect that the MMR vaccine (or others) are a cause of autism are often proponents of the GFCF diet as well as other biomedical interventions (supplements, detoxification treatments, hyperbaric oxygen, etc.) Generally they also see clear signs of intestinal distress in their children - irregular bowel movements, yeast infections, abdominal pain, internal bleeding, etc. We have seen none of these for our daughter, which is the main reason we have not pursued any special diets.

Later in the week (Feb. 2) the scientific journal, Lancet, which originally published Dr. Wakefield's study, retracted the article because of the review panel's findings. You can read the explanation for their retraction here. The bottom line is that the British review board and the Lancet are calling into question the causal link between the MMR vaccine and autism.

That will not be the end of the story. I've already seen comments on other blogs from individuals who are convinced there is a link. They see ethical problems on the other side of the issue, claiming that investors or relatives of investors in the vaccine industry are sponsoring all of the studies that seem to show that vaccines are safe. They view Dr. Wakefield as a martyr of the vaccine machine. "But wait," replies the vaccines-are-safe-crowd, "Dr. Wakefield was invested in a single Measles vaccine and his study supported the use of single vaccines instead of the triple shot, so his study is unethical in that regard, too." Then there are the lawyers for both sides who stand to profit no matter who is right...

I don't honestly know what to make of all of it, which is why I'm reading more. For us the MMR/immuno-neurological storyline doesn't seem to explain our daughter's autism. I do believe that for the vast majority of children vaccines are safe. After discussing vaccine concerns with our pediatrician we proceeded to vaccinate our twins, albeit on a slower schedule and being sure to avoid vaccinating if they were recovering from an illness. I go back to wondering if what we currently call "autism spectrum disorders" aren't really several different disorders that manifest in similar symptoms but have different root causes. There is no other way my logic can explain such different storylines from parents who in the end just want answers, and help for our kids.

Sadly when the answers come I'm not sure we'll recognize or trust them because the community seems so deeply divided over this issue. It reminds me of political or "religious" debates because neither side trusts the other sides' sources, and everyone spends more time defending their point of view than digging down to the crux of the matter. I think we need a wake up call in that regard. Remember the statistic that started this journey for me in the first place? 1 in 110. Our school systems are overwhelmed, our social services are stretched thin, parents who try to meet the gaps the schools and social supports can't cover are fraying at the edges, and the children are falling through the cracks. We can and must do better than this...for our kids.

Angels Part 1 Devoted to Worship

As a result of re-reading two Frank Peretti novels, some interesting discussion at our weekly Bible study group, and my read the Bible in two years commitment, I have been wanting to learn more about angels. Since I just finished the Fruit of the Spirit series here, and since my other studies take up my meager devotional times, I'm exploring the notion of writing about what I learn from my angel study here. I am not sure if there will always be a direct connection to special needs, but it will keep me accountable to actually do the study, and I hope it will be encouraging to you.

I am using a book called "Angels" by Douglas Connelly, A LifeGuide Bible Study. It is divided into eight studies. I don't expect to quote much of the book (it is mostly just suggested scripture passages and questions) but I don't want to pretend that the format is entirely my own idea, either.

First, some background: I believe angels are real, spiritual beings. The Bible speaks about them extensively. What is hanging me up is a mixture of what I will call "folklore" and flashes of Bible stories that I have heard from childhood on. I want to have a clear Biblical understanding of who these creatures are, what they do, and how they are different from people.

Today's passages are Isaiah 6:1-7 and Revelation 5:11-14. The Isaiah passage describes a vision that the prophet Isaiah experienced in the year of the death of King Uzziah (740 B.C, King of Israel). He suddenly finds himself in the presence of God and His angels. Isaiah calls the angels seraphs (which means burning ones) and describes them as creatures with six wings. Two wings cover their faces, two wings cover their feet, and with two they fly. As they fly they call to each other, worshipping God:

Holy, holy, holy is the LORD Almighty;
the whole earth is full of his glory.
Isaiah 6:3 (NIV)

Isaiah also describes a close encounter with one seraph. Understandably so, Isaiah becomes acutely aware of his own faults and sins and confesses aloud that he is undone because of his unclean lips. One of the seraphs flies to him with a live coal in his hand, touches Isaiah's lips with the coal and assures him, "See this has touched your lips; your guilt is taken away and your sin atoned for." (Isaiah 6:7, NIV)

In Revelation, the apostle John describes a similar scene around God's throne where millions of angels sing:

Worthy is the Lamb, who was slain,
to receive power and wealth and wisdom and strength
and honor and glory and praise!
Revelation 5:12 (NIV)

Their praise inspires every creature in heaven, on earth, and under the earth, and on the sea to respond in kind:

To him who sits on the throne and to the Lamb
be praise and honor and glory and power,
forever and ever!
Revelation 5:13 (NIV)

From these passages we can glean several truths about angels, and particularly seraphs:

• They are spiritually pure - they reside in the presence of the Holy God.
• They are actively at work worshipping God and tending the altar.
• They understand that sin requires purification and atonement.

Most importantly, we can enter into worship with them. Though we are not pure as they are, there is a way that we can be cleansed. Our sin is atoned for, and we can worship God as they do. I was particularly drawn to the simplicity of their worship. They focus on God's character - Holy, Almighty, Glorious, Worthy; and what He is due - in short, everything. This simple formula should be accessible to everyone. One of the blogs I frequent, Specialgathering, is focused on creating communities of worship for individuals with special needs. At the foot of God's throne all are equal.

The Never-Ending Bake Sale

I'd like to introduce you to a young lady of impeccable character and taste! It gives me such hope when I hear about future leaders like Katie Unkle. Katie's older brother was diagnosed with autism when he was six years old. As they grew up together Katie was bothered by how people mistreated him. She decided to do something positive with her frustrations. She took her gift of baking (chocolate velvet torte to be specific), created a non-profit Cakes 4 a Cause at the age of 14, and uses 100% of the net proceeds from her cake sales to donate money to autism research and advocacy via the Doug Flutie, Jr. Foundation for Autism. You can read the full story and watch a video to meet Katie and her brother, Ben, here.

For $35 they will ship a torte anywhere in the United States.

If you happen to be local to Southlake, TX you can pick one up for $16.

Can't go wrong with chocolate velvet torte.

2010 Topic Archive

OOPS - this is a little messed up since I started using 'Pages'...working the bugs out, bear with me. Meanwhile... Look in the sidebar. At the top you'll see the SIMPLE LIFE INDEX. Click on 2010 Topic Archive to see a version of this with active links...while I rebuild this one as I have time. Grrr...

I use the following schedule for The Simple Life. Below each category I've listed current posts that fall into those categories. This post will eventually become an archive for 2010 by topic rather than by date. Look here for the 2009 archive by topic. I hope you'll find this useful as you navigate around the site. Look here to see what I hope this blog is all about.


Monday Posts - Practical Tips
The Power of Choice
Reclaiming the Sparks with your Spouse
Co-regulation...My Piece
Co-regulation...My Supports
Time keeps on slipping
Chores that Work
Tuesday Posts - Bible Based Ideas
Self-Control - Fruit of the Spirit Part 9
Angels Part 1 - Devoted to Worship
Angels Part 2 - Strangers Among Us
Angels Part 3 - Jesus is no Angel
Angels Part 4 - The Other Side
Angels Part 5 - Decisions and Directions
Angels Part 6 - The Armor of God
Wednesday Posts - Review of book, movie, etc.
(Also see the Book Reviews Page in the SIMPLE LIFE INDEX)
Book Review - My Big [Kid] Potty
Book Review - The Social Skills Picture Book
Book Review - Mother Warriors
Book Review - Anything but Typical
Book Review - Crow Boy
Book Review - Little House on the Freeway
Book Review - John Jeremy Colton
Thursday Posts - What We Learn from our Kids
Self-Control, the child's perspective - Fruit of the Spirit Part 9 cont.
Persistence
Wants and Needs
Time to Rest
Kid Interview
Why, oh, Why?
Friday Posts - News & Advocacy
Sensory Sensitive Cinema
Of Stories, Questions, and Mistrust
It's Like Riding a Bike
Seclusion Rooms and the Like
The IAN Project
Look Who is Playing at Carnegie Hall!
Shoot for the Moon (or some clay...)

(old) Saturday Posts - Action Posts - How to be an Advocate
Acoustic for Autism
The Never-ending Bake Sale
Olympic Fever
Number One Advocacy Need

(new) Saturday Posts - Highlights and Heroes
A New Category and a Tribute to an Old Friend
Tourette Syndrome Primer
A Primer for Cerebral Palsy (CP)

Sunday Posts - Link Digest
Sunday Digest 13
Sunday Digest 14
Sunday Digest 15
Sunday Digest 16
Sunday Digest 17

Book Review - My Big [Kid] Potty

Our twins are at the beginning stages of showing some interest in toilet learning. Fun and overwhelming all at the same time. It is bringing back loads of memories from this phase with our oldest daughter, which took over a year. This was in the days before we understood anything about her challenges. We knew she wasn't talking like other kids her age, but we didn't know why. She did have some (unique) ways of communicating that got the message across. We felt like she was physically ready for toilet learning, but she wasn't taking the initiative. Having noticed that she learned things from stories (but again way before I had even heard of social stories) I checked My Big Girl Potty out from the local library. We renewed it as many times as we were allowed to, and then I bought a used copy from Amazon. I cannot even guess how many times we read it. Often we read it while "trying the potty" hoping she would make an even stronger connection. It is not a true social story because it is written about a little girl named Ashley, but any little girl could become instant friends because "Ashley is a girl just your age." who "...likes playing with toys and looking at books." The child follows Ashley's journey from diapers to potty chair and witnesses her first success (complete with surprised look on Ashley's face). The parent learns some suggestions like letting the child play with their stuffed animal trying the potty, and sitting with clothes on first to get acquainted-like. Ashley graduates to big girl pants, and even survives an accident with a calm and regulated Mommy and Daddy helping her clean up and reassuring her that she will remember next time. As pictured above there is also a boy version. I have not read that one (yet...will have to pick it up next library trip, though).

Hindsight being 20/20 I'm sure we did a lot of things "wrong" with our daughter in this area. I often wish we had known earlier what was going on. If we had known, perhaps I would have looked at resources like these (and there are lots of others...try a google search) for assistance with this challenging transition:

• Toilet Training Children with Special Needs
• Rifton Toileting Systems
• Potty Training Your Special Needs Child

I'm glad we found My Big Girl Potty, though. It's definitely one thing we did right.