Sunday Digest 31

Here is the latest and greatest...the posts that I found particularly helpful, inspiring, moving, or funny in the last few weeks. Click on the links from my on-line friends and if you leave a comment make sure to tell them you found them via Simple Life. Thanks!

1) I loved this post by Autism & Oughtisms exploring speech development and how much more one can notice each stage when there are delays. Little things like learning to say "um" when you're having trouble thinking of the right words...I remember being so excited when my daughter learned to say yes when she meant yes. So important.

2) My fellow 5 Minutes for Special Needs contributor, Lee, shared about their annual "prom night" sponsored by a local high school for teens and adults with special needs. It sounds like a wonderful evening for everyone who is involved.

3) Bird on the Street hit a home run with this post about raising a special needs child. Yes, there are challenges but  maybe not the challenges you would expect a parent to be bothered by.

4) Having a sibling with special needs can be...challenging. This brother seems to have it figured out. Thanks for sharing, Mary Hill at Hopeful Parents.

5) And this post, from Specialgathering is just plain funny. 

The Learning Curves

I am increasingly amazed by the good zone we seem to be in with our daughter. A few small, now easily handled tantrums at home, but great behavior at school, at church, and at various activities. Until you enter extended conversation with her, it is hard to tell there's much there beyond general quirkiness. I'm inhaling deep breaths of these good times. It has been a long time coming, and I have no doubt that there will be new challenges to face ahead, so every minute is a blessing. I think I am learning from her how to flow with my days, to accept each one as a gift and keep putting one foot in front of the other when things are challenging, trusting that eventually we'll find level ground again.

I'm navigating the world of raising younger typical siblings. With no benchmark from our oldest child it almost feels like we're parenting for the first time all over again, if that makes sense. We've entered new territory with the twins as they have entered preschool. So far they have made that adjustment well. Their big "phase" at the moment is insisting on wearing only certain clothes. We have about three outfits each that are acceptable without putting up a fuss. This keeps the washing machine busy, and meanwhile I'm encouraging some flexibility on days when I don't get the laundry quite done on time...Interestingly it seems that this stage is useful for encouraging them to pick out and put on their own clothes, because if I refuse to change them they will take off the set they don't want, go pick out new things, and put a good faith effort into putting them on by themselves. It is amazing to watch these skills develop...so different from our first time around. Would I be so philosophical about it if I hadn't survived pitched battles over much smaller issues with our eldest? Would I watch with such awe as they learn new skills with such ease? Would I even realize the importance of this phase or understand the roots of it?

Meanwhile there are other needs in the extended family that are taking precedence, and it is good to feel like our own little clan is in a good spot and has some energy to devote to others. Sandwiched, yes, crushed, no.

In all of these things there is a steep learning curve. Learning to breathe in and hold onto all that is glorious and good. Learning to let go and let others do for themselves. Learning to step in and lend a caring hand. I don't think I would be learning it with such clarity without the experiences I've gained by raising a child on the spectrum. It is a strange blessing to be taking from the Hand of Providence.

Sunday Digest 17

I am just re-entering "regular" life after a two day retreat, which is becoming an annual "must go to this" event for me. I always come away with new ideas to make my own spiritual life deeper and more meaningful which in turn helps me stay on track as I mother my children. That said, I'm super tired (perhaps my only complaint is the bed I slept on had a not so great mattress, at least for someone who is spoiled by a heated water bed!) So today's digest will be brief, and hopefully not too random. I'll share more thoughts from the retreat as appropriate here.

1. Back when the Olympics were on we added local channels to our satellite TV service and started seeing ads for NBC's new series "Parenthood." Then I read a post by one of my local heroes, Laura Shumaker, and learned that there is a character in the show who has Asperger's Syndrome. I've watched several episodes now, and aside from my dismay at the amoral direction of the character's choices and values, I think they have done a good job presenting the dilemmas of a family facing a new diagnosis of their child. Too bad we had to cancel the local channels again. I haven't decided if I enjoy it enough to watch it online here.

2. For more special needs "television" check out Exceptional Family TV. These are not actors, but real individuals trying to tell the world their special needs family story both for purposes of advocacy and to encourage others who are walking the same road. Thanks to Bird on the Street for passing along the information.

3. Lauren over at Hopeful Parents had some good insights into how to help your child learn skills that will help them be more independent as they transition to adulthood...it apparently happens way too fast.

4. My blogging role model, Jamie, over at Steady Days, shared some thoughts about how she copes during hard times with her child. I know I'll be looking back to this post next time we hit troubled waters...really great ideas.

5. Lastly, I about fell off my chair when I saw the title of this piece. Prevent Autism? Really?? Have a Healthy Baby! (Guaranteed?). Last I checked (which is pretty often these days) there is no KNOWN cause of autism (aside from some genetic pre-disposition, which I'm pretty sure one cannot control)...therefore it seems to me it would be pretty hard to PREVENT it, much less GUARANTEE people a healthy baby. I did watch the video. There isn't anything necessarily wrong with any of the advice this woman gives. Of course people should avoid toxins when they're pregnant for multiple reasons. There is, however, a sense that if you have a child with autism and you somehow missed one of these steps (like having all your old metal fillings removed) well, there you go. All I can say is UGH.

Why, oh, Why?

Commonly around age three neurotypical children will begin to ask, "Why?" about everything.

A representative conversation might be:

"Mommy?"
"Yes, Susie?"
"Why does it rain?"
"There is too much water in the clouds, so they let some of it fall back to
Earth."
"Why is there too much water in the clouds?"
"Because they have gathered up a lot of water from the sky."
"Why is there water in the sky?"
"Let's go ask your Father!" (or look it up; or I don't know; or time to
finish your snack, dear...)

The questions all nest neatly inside each other until the parent is left with an unanswerable question and gives up in despair. I must note here that having been raised by a father with a Ph.D. in physics it was hard to get to that point with him...he usually did know the answer and often it was me who gave up the game of the endless whys.

I remember sitting in a circle with other preschool parents at an education meeting and listening to them bemoan the endless string of cause and effect conversations. At the time I could not relate. My daughter, though almost a year older than some of her classmates, had not yet met this developmental milestone. In fact, I thought to myself, "I don't recall her ever asking me any questions..." This was in the period of time when we knew that she had significant language delays, but before we knew as much of the story as we know now. That was more than two years ago. I'm "pleased" to report that we are now very much IN that milestone. A sample of the why questions I hear each day:

• "Why do you not want to crash into the car in front of you?"
• "Why do some people not like gymnastics?"
• "Why did you use the laminating machine instead of laminating paper?"
• "Why is this a skittle instead of an m&m?"

When I say I hear these each day, that is what I mean. I cannot tell you how many times we have discussed why it is not a good idea to crash your car into anything, but sure enough the next time we are zipping along in the family car the question arises again. It is hard at this point to be sure if she doesn't comprehend our answers (her receptive language is probably her weakest skill) or, my personal theory, she really wants to have a conversation with us and she knows this mode and topic will get us to talk to her. The reason I think it is the latter is because sometimes she can't quite decide which why question to lead off with, so it sounds a little bit like this:

"Mommy?"
"Yes, sweetie?"
"Why do you...why do some people...why did you use the...why is this a
skittle instead of an m&m?"
Mommy attempts to frame a response that continues the conversation but
answers her question...

Or sometimes the conversation jumps randomly from one why question to another with no apparent connection among the topics...except that she is leading a conversation as best as she knows how.

I am learning to give answers that help her stay on topic, and when that fails, I'm learning to understand what's going on and play along, just being a willing conversation partner even though it's driving me crazy. I remember back at that preschool meeting thinking, "Oh, if only we could get there I will never complain about it." So I'm trying really hard not to complain. Actually I figure this is just preparation for when our twins should enter this phase in several months here. Maybe they'll all three be peppering me with "Why..." and wow...can I come live at your house then?

Time to Rest

My children have been enjoying picking these yellow wildflowers in our backyard. I guess technically they are weeds (yellow woodsorrel, oxalis) but one person's weed is another person's, "Look, Mommy I picked these for you..." I think they are quite a cheery little flower, but I noticed in the evening they close up. I was amazed that they do this even after being picked, mangled by little hands and shoved in the handiest glass of water, and for several days in a row. At first I thought they had just wilted, but the next day, they were cheery and bright again.

I have a few things to learn from these flowers, and this seems like as good a time as any to take my lesson. March 30 will mark one year that I've been plugging away on this blog. Posting almost without fail (hospital stays don't count, right?) every third day, amazingly continuing to come up with content, begging for readership, learning the social media frenzy, and in general having a wonderful time of it.

I must admit I'm zapped. Time to curl up and rest a little...sure to reappear just as bright and cheery when morning returns. Don't worry, oxalis is a real pain in the toosh to get rid of I hear, so I'll be back...hopefully right after Easter. Call it a blogcation in honor of my blogversary. See you in the morning!

Milestones

Have you noticed that parents just love to compare notes on their kids. It seems to be a favorite way to pass time in our area. Every milestone from first social smile to high school and college of choice is inquired about, followed by, "Oh, Susie did that at age..." or "We're so proud of Jim, he's headed to..." I'm not sure why we do it, and I suppose it is simply harmless conversation fed by healthy parental pride. It can be quite painful, however, when your child is delayed in some area and another parent insists on drawing attention to the gap. Even before we knew the extent of our daughter's challenges it was frustrating to have other parents emphasize how well their child was doing in a particular skill set.

I am slowly learning that the most important thing, instead of comparing our kids, which most experts agree is fruitless anyway since even normative children do things at different ages, is to look for progress. Noting their own personal achievements is much more satisfying. Our daughter's speech teacher recently did an assessment and was pleased to find that our daughter's language skills had improved in a couple of areas to that of an average five year old. Considering that a year ago she was testing at a three year old level, we were quite pleased with her progress. Only later did it occur to me that in my past life I wouldn't have expected to be excited over my child testing average in any area. This shift in attitude in itself is thrilling. I can rejoice in my daughter's achievement in her frame of reference rather than compare her to some external "standard."