Wednesday, June 30, 2010

Book Review - Leo the Late Bloomer

Leo the Late Bloomer
Last night I ran away from home (with my husband's permission). I went to the local library for some peace and quiet, and made use of their wi-fi to catch up on reading my fellow bloggers' work. For once I was at the right place at the right time! I read a post at Simple Mom by Jamie wherein she reviewed and recommended ten picture books that teach good life lessons to our kids. I decided to head to the children's section and pick a couple of books up. Leo the Late Bloomer by Robert Kraus was among them. I am aware this is a classic book. I think it probably is a great book for kids, especially those who are struggling to learn skills and keep up with their peers. Leo has a hard time with reading, writing, drawing, eating, and talking! His father is concerned, and watching for the day when he will "bloom." His mother is more sanguine..."Leo is just a late bloomer..." she assures Dad. For children with challenges I hope it would be encouraging to see that Leo "made it". I read it to my daughter tonight and she said, "It's good!" high praise for a new book that she didn't choose.

I am a bit worried about the message to parents. This partly has to do with our history with our dear girl. I first noticed language delays (the most obvious of her challenges) at 18 months. Our pediatrician recommended giving her some time to catch up. Good friends of all stripe asked, "What are you worried about? Lot's of kids don't talk until they're two...she'll be fine." At two we got more hand patting and, "Speech Therapy doesn't really work at this age..." (False!) So we waited until she was three to find out about her language delay, and then another year and a half before we learned there was much more to the story. Good news: she is doing great now that we stepped up interventions on many levels. Bad news: Mom is forever haunted by not following the only known effective treatment for ASD of intense interventions happening by 2 years of age if possible. In the end, there are a lot of voices out there telling parents to let their kids "bloom" at their own pace, and in many, many cases this works out just fine. In our case there's no telling what would have happened if we had continued to just let it go. I now tell parents who ask me for advice that if they are concerned they should seek professional advice until they feel their questions are completely answered and addressed. In other words one shouldn't be laying awake at night wondering what's up with their kid. That is what I wish someone had told me. I don't think this is mutually exclusive to the rest of what Leo's parents typify: concerned, watchful, but patient and loving...the snugly tiger family portraits are the best. They all made it!

Sunday, June 27, 2010

Sunday Digest 19

As is my wont I've been thinking about the future, I guess...these are the posts and stories I've highlighted over the last few weeks.

Hopefully short term plans: learning to read, by Laura Shumaker.

Looking a little further down the road: wondering what typical sibling interactions with special siblings will be like (Hopeful Parents).

Then way down the line, career options also over at Hopeful Parents. (For the record my kiddo wants to be a doctor AND a teacher.)

And praying for a woman I've admired for many years, Joni Eareckson Tada. A fellow believer, a quadriplegic, and now a cancer patient. According to her website Joni will have surgery tomorrow afternoon. Please join me in praying for healing, wisdom, and comfort.

Meanwhile, for this time I'll share my praise song of the week, a favorite from Rich Mullins. I posted this on Facebook earlier this week, sadly (for me) noting that Mr. Mullins is already enjoying his eternal reward. I am so glad for the legacy of his music, which I guess some people don't quite "get," but so many of his songs express the unutterable groaning of my soul. This one always fits.
If I stand let me stand on the promise
That You will pull me through.
And if I can't let me fall on the grace
That first brought me to You.
And if I sing let me sing for the joy
That has born in me these songs.
And if I weep let it be as a man
Who is longing for his home.

Thursday, June 24, 2010

You Can't Just Slap on a Bandaid

Today on the way home from a friend's house my daughter said she needed a bandaid. She meant she wanted a band aid "right now." I was driving at the time, so I asked her why she needed one, and she said her foot was hurting. I had noticed her walking funny on the way to the van, but she often walks a little funny just because. I knew pretty quickly what was wrong. She had been wearing flip-flops around our friend's yard, and they have boysenberry vines with lots of big thorns. I figured she had a thorn in her foot. I also knew that just putting on a band aid wouldn't help...short term or long term. Short term the pain would still be there...long term it would fester, get infected, and take a lot longer to heal. What we really needed to do was dig out the thorn, then put on disinfectant and finally a band aid. I told my daughter, who was now in tears because I wasn't stopping the van right then to get out a band aid, that I would have to look at her foot first. When we got home she went into the house ahead of me and by the time I had her siblings unstrapped and herded into the house she had already appropriated a band aid, but was still limping around the house. Unfortunately it was already late for dinner, so I threw one container of leftovers in the microwave, grabbed the bottle of disinfectant and convinced my daughter to follow me back into the bathroom where there was enough light, tweezers, and more band aids. By this time even she had figured out that just slapping the band aid on wasn't working, but she still wasn't too keen on the tweezers idea, or the disinfectant for that matter. Luckily the thorn was sticking out quite a bit and it was relatively easy to remove once I had all the tools at my disposal. After it was out we examined it, and tossed it in the garbage.

As I returned to the kitchen to continue my haphazard dinner prep the spiritual application of what had just transpired would not leave me. So many times when I witness something unpleasant in my character, or when another person offends me I would just love a quick fix. Slap a band aid on please.
Getting angry too often? Try counting to ten, deep breaths...if all else fails scream into a pillow until the moment passes. Do these techniques really get to the heart of the matter though - my heart? My anger most often comes from fatigue and fear. The former because I'm always taking on that one extra project...the latter because I like to be in control, and deep down I know I'm not. So counting to ten is good and all, but unless I address the tired and timid spirit in me I'm going to be stuck in a loop of anger. Eventually counting to ten won't work anymore. What I really need is to ask my Loving Father to use His Tweezers (His Word, the Holy Spirit, wise counsel...) and remove these sinful habits from me. I need the spiritual bactine of worship and prayer applied liberally to the affected area several times daily. Then I can rest in the soothing protection of His love, which binds up all wounds (Psalm 147:3).
What about when it's someone else's sin that offends? Shouldn't I just be the bigger person and brush it off, walk away, move on? That's just slapping a different brand of band aid on. I do believe we should work on our character so that we aren't offended by every little thing: a misdirected arched eyebrow...a gaze that lingers a little too long...a tube of toothpaste that is all squished in the middle instead of being rolled up neatly from the end. However, if we are genuinely offended, we can't just ignore it. These things have a way of revisiting us days, weeks, months, and even years later. It's not comfortable to sit with someone and say, "I was hurt by what you did..." but it is so necessary.
God has taught me this lesson so many ways, and at so many different times, but it became clear in a fresh way today. Being the one in charge of removing the thorn gave me a different perspective. My daughter didn't want me to look at her foot, or touch it in any way. The slightest brush of the tweezers sent her into panic mode. I finally told her to lay on her tummy, close her eyes, and hold her breath. That kept her still enough to give me good purchase on the thorn with the tweezers and in short order we were able to examine the trouble in an objective manner and move on. I knew that what I was doing for her was to her benefit, even if she didn't like it, but I needed her to trust me and be still. Oh, to be brave enough to submit to my Father's Hands in the same way.

Be still before the LORD and wait patiently for him... Psalm 37:7 (NIV)

Monday, June 21, 2010

Changing Schools - Part One

This post is the first in a series on transitioning to a new school. My Monday posts will focus on this topic for several weeks because it is a large and complex topic. Also, this post is participating in the Moms' 30-Minute Blog Challenge at Steady Mom.

In March we were told that our daughter's Individual Education Plan (IEP) goals and services could now be provided at our "home school" which is always preferred as the Least Restrictive Environment (LRE) and therefore her placement was changed. Even though she had attended her current school for three years through Early Intervention Preschool (EIP) and Kindergarten, even though the child has trouble moving from one daily activity to the next much less through large changes, even though she struggles to establish good peer relationships, even though...we were faced with a decision that essentially had been made for us. At the end of our IEP meeting we were preparing to sign forms to indicate our presence at the meeting and our approval of the plan. I stated that I approved of the services and goals, but that I did not approve of the placement decision. I asked how I should sign the forms to indicate non-agreement and was told that it was not a decision I could approve or disapprove, it was simply where the district had decided to place her.

I left that meeting in a fog. We've learned not to discuss "uncertain" things with our daughter, so I knew I would have to mask my frustration and confusion from her until we had figured out what we should do. This took a lot of effort and didn't leave a lot of energy over for daily functioning. As a result one of our cherished stoneware plates met its end on our stone dining room floor later that evening. I was almost non-functional. After the kids were in bed I fired off e-mails to several trusted resources, set up a meeting with two wonderful mentors, got some of my thoughts down on paper/screen, and went to bed to finally let the tears wash away all the pent up emotion.

To get the full impact of this story you have to understand that we had already uprooted our daughter once from a dear neighborhood preschool because we couldn't supply appropriate support resources in that setting. Moving her completely to the campus that hosts our district's Early Intervention programs had drastically changed our family's "M.O." Instead of walking to school we drove 10 minutes each way, sometimes several times a day. We developed social circles for ourselves and our daughter in this other neighborhood, and after a rough start she had begun to really blossom there. We felt like the stability of being in one place for more than one year had contributed to her progress. The prospect of changing schools felt like taking a tender seedling, and ripping it out by the roots to transplant it again. Allowing myself to process all of the emotions that came with this "out of my hands" decision was not only cathartic, it was necessary to clear my mind and let me focus on the next more pragmatic steps.

We had to find out what our options were: 1) Fight the transition. 2) Question the transition. 3) Accept the transition.

1) Fighting - There is always the option of going to arbitration or fair hearing. These processes can take months and generally require hiring advocates and/or lawyers, and in this case we had little evidence that the placement decision was "wrong" in any legal sense of the word. Home school placement is always considered LRE if IEP objectives can be met there.

2) Questioning - We could apply for an intradistrict transfer. Every district has its own way of handling requests like these. In our district you apply in April or so and you get an answer back in June. From past experience we knew that Summer is not a good time to work through complicated IEP issues, and regardless of which direction the district decided the IEP would need to be re-worked. If they denied our transfer request and we had to accept the transition we would be left with fewer resources to support the transition, and for our daughter good transitions are a necessary as food and water (well almost). This would also mean keeping this secret from our daughter much longer. It would also mean, we found out later, allowing her to develop misconceptions about where she would attend 1st grade that would be much harder to break down afterward

3) Accepting the transition in March/April gave us more time to develop a transition plan with support and input from the schools and district personnel. It also let us move back to our original "Family M.O." Our younger children will (eventually) attend that lovely neighborhood preschool and we'll be able to walk everywhere that we want to, and hopefully rebuild social circles that were previously put in limbo. Before fully accepting the change in schools we did some private assessments and waited for the second term report card to come in to be sure our daughter looked "ready" to us to make such a big leap.

In other situations, and for other families there might be other options to consider if school placement becomes an issue. In other situations, and for other families, our decision to accept the placement decision might not be the right choice. For us it has worked (so far), and it has allowed us to focus on developing a good transition plan, which I'll share in the next post.

Friday, June 18, 2010

Soccer, Faith, and Challenge.

I love soccer. It is the only sport I ever felt like I was any good at. I played fullback. Unfortunately my knees were not made for soccer and I had to give it up at a rather young age. I've often wondered how different my path might have looked if the mere act of kicking a soccer ball mid-run hadn't sent me down in a heap with a dislocated knee. I've also wondered why I don't enjoy watching soccer more since I liked playing it so much. I'm not much of a sports watcher anyway (except for the Olympics, which I watch as much as possible). Maybe because it wasn't a televised sport when I was growing up, or at least not on the channels our non-cable household could get, I never got in the habit of watching the game.

I have paid more attention to the World Cup this year than previously. Perhaps because I'm such an avid Facebook user and many of my friends are watching and keeping us all posted on World Cup events it has held my interest more, though I haven't watched a game. Team U.S.A. is still in the mix I hear (just barely it sounds like) so maybe I'll have to try to watch, just this once. Especially since a friend of mine forwarded this article to me about the Team U.S.A. goalie, Tim Howard. Beware that when you navigate to this link there is a noisy video ad that plays whether that is your active window or not...

Tim Howard appears to be a great goalie, a good teammate and a competitive player. He is also a faithful follower of Christ, and a man who is affected by Tourette's Syndrome. Sadly the latter fact made him the target of some uninformed individuals who labeled him "retarded". This is a term falling out of favor fast with the special needs community, but it is especially inappropriate for any disorder that does not affect the cognitive domain. We really need to continue to advocate and educate the public at large about the wide variety of issues that can affect development and behavior. The encouraging thing is to read that Mr. Howard's response to the naysayers and his own struggles is to rely on Christ.

"The most important thing in my life is Christ," Howard was quoted as saying. "He's more important to me than winning or losing or whether I'm playing or not. Everything else is just a bonus."
Not much one can say to follow that, except: GOAL!

Tuesday, June 15, 2010

Angels Part Seven - On Guard

This is the seventh of eight posts based on the Bible Study Guide "Angels" by Douglas Connelly, A LifeGuide Bible Study. Today's study is based on Acts 12:1-17, which recounts the rich story of Peter's miraculous escape from prison, where he was being heavily guarded on "death row."

Even though Peter has witnessed his fellow apostle James, the brother of John, put to death with a sword; even though it is the anniversary of Jesus' arrest, torture and crucifixion (the text notes that Peter's escape occurs during Passover week); one can see that Peter is living in the power of the resurrection. He is bound with heavy chains at the wrist, personally guarded by four soldiers, and peacefully sleeping in his cell.

An angel appears and lights up the cell. Peter is so sound asleep that the angel has to strike him on the side to wake him up. The text tells us that Peter thought he was experiencing a well he might. Peter had some pretty intense visions (see Acts 10). Still he knew enough to obey the angel's directions, so after his chains fall off (!) he gets up, gets dressed, and follows the angel past every sentry on guard.

One might think the guards were sleeping on the job, but these are Roman soldiers, four squads of four soldiers each, so they're only working six hour shifts, and they know the penalty for misplacing a prisoner...I doubt they were sleeping, but Peter and his angel guide pass right by without any interference.

The angel does not waste time or explain much, but simply gives orders and expects them to be fulfilled.He knows what Peter needs, where he needs to go, and how to get him there safely. He is a personal escort, sent by God to lead Peter to safety.

The angel leads Peter out through the city gate, which opens by itself for them. I don't think we're talking about a picket fence with loose hinges on the gate here. I'm no expert on these things, but I imagine opening the city gate was normally a job for more than one person. Here it opens as if it were a modern automatic door.

Shortly thereafter the angel disappears and Peter (finally) realizes it is not a dream, not a vision, but that he is really free. He knows just where to go - prayer meeting! And even though those attending the prayer meeting have been earnestly praying for his release, they don't believe it when he shows up on the doorstep. Talk about an answer to prayer! Poor Peter's standing on the doorstep, "Hey, guys! Let me in, quick!"

Peter's turn to disappear. When he is nowhere to be found the King orders the guards who lost him to pay the ultimate price. This, again, is reminiscent of the resurrection, except that the guards who let Jesus get away were spared death, rather they were paid to keep silent.

Why is Peter rescued where James was executed? This is a specific form of an age old question, "Why me, God?" The whole book of Job is full of this question, and God's answer is because He is God. He is sovereign. He knows. Peter still had work to do, people to meet, lessons to learn. James, evidently was ready to graduate, but only God knew their stories and how and when they would end.

We can pray and ask God for deliverance, protection, and angel guides. Many times they are probably there without us knowing it. Still we must remember that God's answer is sometimes "no" but He still knows what is best. Psalm 91 describes His desire to protect us, but also places the emphasis on relying on Him:

If you make the Most High your dwelling-
even the Lord, who is my refuge-
then no harm will befall you,
no disaster will come near your tent.
Psalm 91:9-10 (NIV)

Saturday, June 12, 2010

Duchenne Muscular Dystrophy

In my "spare time" these days I've taken to reading Forbes magazine. My "spare time" is when I sit in my twins' bedroom and make sure that they stay in bed for nap time. This requires sitting for about 15 minutes without doing anything interesting to them, but having enough peripheral vision to make sure they're not escaping. Reading works well, but I need something I can put down once they're sleeping because that is prime time to "get stuff done" and if I've allowed myself to pick up a novel...well...stuff won't get done. Forbes is perfect. It is helping me gain some business sense and a better understanding of the economic/political/social influences of our culture, so it is interesting enough to hold my attention away from whatever delay tactics the twins are trying today, but is not so gripping as to keep me sitting there reading "just one more page."

Anyway, I was amused to read this article about a guy who invented guarana-flavored beef-jerky when his energy drink exploded in his lunch while he was skiing...amused until I read about one of his triplets who is affected by Duchenne muscular dystrophy. Multiples and special needs...I can relate. He says the experience taught him, "All the money in the world doesn't mean anything--and I need a lot more money..." Oh yes, I can relate.

Duchenne muscular dystrophy (DMD) is one of nine degenerative disorders known as muscular dystrophy. DMD is caused by an absence of dystrophin. Dystrophin is a protein responsible for maintaining muscle cells. Early in childhood (usually before age 6) muscle weakness and "wasting" begins. Voluntary muscles are most affected, but eventually the heart and breathing muscles will also be affected. Survival beyond age 30 is rare, and most individuals with DMD will require a wheelchair before age 12. DMD is an "inherited" disorder, meaning it has been traced to a recessive gene on the X chromosome. A mother may have one copy of her X chromosome that is mutated with the DMD gene (Xx) and unknowingly pass that gene on to a son (xY) or daughter (xX). DMD affects males more because they don't have a "healthy" X chromosome to take over dystrophin production, meanwhile the female can be a carrier and not know it for several generations. Some female carriers also exhibit mild symptoms and/or have associated heart disorders. DMD is treated by trying to keep the body flexible an mobile as long as possible.
  • As muscles degenerate, tendons in joints shorten and the joints may become fixed (contracture)causing immobility and pain. To combat this, physical therapy is performed through range of motion exercises that maintain and extend flexibility. Braces may also be used to keep limbs stretched. Eventually surgery is required to release the tendons. Then braces are required to support the joint.
  • The spine may be pulled into a curved shape from side to side (scoliosis) or forward (hunchback). Exercises are used to keep the back as straight as possible. Surgery to place metal rods is often performed in adolescence.
  • Steroid medications (primarily prednisone) have been found to slow the progression of DMD. Due to the side-effects of these medications they may not be prescribed until a child has trouble walking.
  • About one third of boys with DMD have some learning disability related to dystrophin function in the brain. [I note with interest a connection to another X-linked genetic condition known as Fragile X which causes cognitive delays.]
To learn more about DMD I recommend starting here. And if beef jerky is your thing, be on the lookout for Perky Jerky...coming soon to a store near you.

Wednesday, June 9, 2010

Resources for Summer

365 Days of Creative Play, 4E
Around these parts school ends tomorrow. I am more prepared than I was last year, but still probably not really ready for adding structure to the day for my children. We are fortunate to have a large, fenced back yard. It is tempting to open the door, shoo them outside and go about my business. I'm sure there will still be some of that, but my goal is to have at least one structured activity in the morning and another in the afternoon. I've made a list of "larger events" - trips to the beach, zoo, etc. and smaller activities that I want to try out, plus weekly classes for our six year old, and library storytimes for the twins. Ten weeks should fly by with that schedule! For short and easy activities I've pulled out one of my favorite resources. 365 Days of Creative Play (I have the 3rd edition, 4th edition pictured here) is a real gem. The beginning suggests safety rules and supplies to have on hand. After that the authors list one idea after another of activities to do with your children. Some are very free-form: Fireworks Dance (perfect for July 4), others have specific outcomes in mind: a plaster of paris handprint plaque (classic!). There is a recipe for homemade playdough included. Some of these activities are short, others are more elaborate and require more time. At the end a handy index divides the activities into thirteen categories in case you're looking for inspiration in a certain area. The categories are: art, construction, craft, dance, education, environment, family, foods and cooking, games, horticulture, make-believe, music and nature. The book says it is suitable for children ages 2 years and up.

I'm planning to pull out my post-it notes and flag several ideas from this book to get things started...tomorrow I guess! 

Sunday, June 6, 2010

Sunday Digest 18

Today I wanted to do something a little different for my Sunday Digest. It's an audio-visual theme...videos and/or songs that have been reaching me in the last few weeks...

1. I first saw this on Facebook where I am "friends" with Randy Alcorn...actually I guess I'm his fan on Facebook. Either way, pretty cool that I get a daily dose of wisdom from him. He posted a link to his blog for this video, which basically shares my heart on choosing life even for children expected to have special needs. We would have missed out on a lot if this mom had chosen otherwise.

2. I saw a link for this video on Twitter. I had to watch it twice it is so amazing. No audio, but wow, the visual...I'm not sure I could do this even with a good camera. Phenomenal. The accompanying blog post on humility explains the heart of an artist and a special needs parent.

3. The song that inspired this digest...We Fall of my favorite worship songs. I suppose by today's standards it is an old song. I remember learning it in my pre-marriage days...a decade ago! At the retreat I attended a few weeks ago the speaker encouraged us to spend more time worshipping aloud. This song came to mind the other day and I sang it out loud while my kids were playing nearby and I was working on the perpetual pile of dishes. Funny...often when I sing my oldest daughter asks me to stop (I'm not that bad, even) but when I sang this one she did not complain. Must remember to do this more often!

4. In honor of our veterans (Memorial Day just passed, and the anniversary of D-Day today) one of my daughter's favorite patriotic songs...Three Cheers for the Red, White, and Blue! We just attended our end of the year Kindergarten program, so this brings a chuckle for sure.

5. My theme song? As sung by a true lady and musical legend. Enjoy!

Thursday, June 3, 2010

Bedtime Prayers

My husband was attending his special needs dad's support group last night, so I had the honorable duty of getting all three of our kids through their bedtime routine and tucked in. This is a challenging task even when we share the duties, truly daunting when it's a solo act. The oldest needs someone to lay down with her for at least a few minutes to improve her chances of staying in bed and getting to sleep sooner rather than later. The twins need supervision to stay in bed, too, sometimes for as long as one hour (I usually take my laptop with me, and this is my facebook and blog reading time). I still haven't figured out how to be in two places at the same time, so when I run the bedtime gauntlet on my own I get the oldest tucked in first, lay down with her for a couple of minutes (listening for sounds of the house being dismantled by her siblings) then give her a quick peck on the cheek and corral the twins in their room to tuck them in.

Last night about the time I was going to peck and run, the child says, "Mommy you forgot to pray."
Usually Daddy handles her snuggle time, so I was not aware that this was part of the deal, and it stirred all sorts of responses in me...

My parents did not enforce bedtime prayers. My brother and I usually listened to Christian music as we drifted off to sleep (I am a child of the Gaithers era), but there were no formal prayers. I'm not sure if there was a philosophy behind this or if it just wasn't something they did. We were certainly encouraged to say prayers at other times.

I recall one night "camping" with our Pastor's family in someone's yard. They had a pickup truck with a camper shell. All the kids were sleeping in the camper and the Pastor and his wife were sleeping in the cab (if my foggy memory is correct) with the sliding window open so they could hear us, but not see us easily. Pastor went through a roll call of sorts, asking each kid to say their prayers. I was struck dumb. I didn't even WANT to say a prayer, and the more he asked me to pray the less I wanted to. I was normally a pretty compliant kid, but for some reason I did not want to do this. I will never forget the strange emotions that stirred in me as I feigned sleep and prayed (ironically) that he would stop asking me to pray.

I was glad that my daughter wanted to say a prayer. I am glad it is a habit my husband is encouraging. I am hoping that next time I tuck her in I will remember and encourage her likewise.

"I didn't forget," I stuttered (not entirely untrue...I seriously didn't know this was the custom), "You can pray."

"Dear Jesus, thank you for Daddy, and for all the daddies. Thank you for [brother] and [sister] and for all the other kids. Amen"
"No, 'Thank You for Mommy?" I asked, feeling a little left out...
"Oh, and thank you for Mommy. There, I got you, Mom."

Indeed you do, my little prayer warrior, indeed you do.


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