Sunday Digest 40

I want to let you all know about several interesting articles I've come across in the last couple of weeks. Check out these links...

1) I have Autism Speaks in my facebook feed, and the title of this blog entry grabbed my attention. I am always interested in adult siblings' perspective on autism as I begin to look ahead to our children's relationships.

2)The link above is a response to another blog post which is a call for more civility among the autism community. I have to say I agree with the original post...if you've ever checked out comments on one of any controversial (or even not controversial) articles on autism, the rhetoric and diatribes become quite disheartening. I can't get into any of that, really. I have my own opinions on all of the controversies, but I recognize them as just that - opinions. I could never claim them as facts to bludgeon another parent with an alternate view. Perhaps I am not cynical enough, but it seems to me if we could put aside our differences we might make more progress in researching and advocating for individuals affected by autism. Isn't that what we all want?

3)  My husband pointed me to this article from parents.com. Though I am familiar with most of the issues explained by this "Alphabet of Asperger's," it is really helpful to have the child's perspective on each of these topics. Our daughter looks a lot like an Asperger's child these days because she has made a fair amount of progress with her language, but she doesn't have the language skills to explain her behavior or preferences like Nick does in this article. For instance she also seems to prefer to be at the head or tail of a line. I always thought she just wanted to be one of the title positions (both have special jobs to do at our school) but maybe it is also because she feels "crushed" and needs some open space on one side.

4) There is a lot of buzz out there about the new definition of autism per the latest DSM update expected to appear May 2013. This article in the New York Times suggests that the new diagnostic criteria will "miss" a lot of individuals who currently "fit" the diagnosis. I haven't studied this very closely, though I probably should soon since we are right at the cusp on some of these issues. To handle things more even-handedly than the alarmist news media, I suggest starting here at my blogging friend Autism & Oughtism's take on the whole issue. She does her homework on these things. I should SO follow her example in this.

5) We watched most of the Superbowl yesterday, and the most interesting "personal interest" story to me was the story of Steve Gleason, a former professional football player now diagnosed with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's Disease.) He has started a foundation called "Team Gleason" that helps other ALS patients improve their lives and reach for their goals. He brought two such patients to the Superbowl - a once in a lifetime experience to be sure. You can read more about Team Gleason here.

Sunday Digest 37

So much to share with you this time around that it may not all fit into one digest. There has been a lot of amazing stuff on my favorite blogs to visit lately...

1) My fellow 5 Minutes for Special Needs contributor, Suzanne, shared her inward (at least) response to a person who left an anonymous note on her car window. I hope the person read it, somehow. Just another reminder that not every disability is visible, even the physical ones. Let us be kind to one another, please.

2) My "down under" blogging friend Autism &Oughtisms shared a touching post about her autistic son and his imaginary friend. In addition to exploring various theories of imaginary friends, she explains how she views this as a positive step in her son's development. I distinctly remember my own joy when my daughter at more than four years old pretended to use an invisible object in her play for the first time. I was ecstatic and nearly burst into tears.

3) Tammy over at Praying for Parker expressed one of my darkest fears. Statistics estimate that 90% of unborn babies diagnosed with Down Syndrome are aborted. Tammy points out that some view this as a way of preventing Down Syndrome. What happens when we can test for autism prenatally? I have no doubt there are people working toward this. I can't quote statistics, but my general sense is that the average joe (or jane) has a more positive view of Down Syndrome than they do of autism. Interestingly, both disorders can have a whole range of effects on the developing child, so termination ends a life that isn't fully understood. I think I am particularly sensitive to this topic right now because an acquaintance of mine is expecting the birth of her third child in the next few weeks. According to some prenatal screening her unborn son has a higher than normal risk of Down Syndrome. She already has one child with special needs...and has gathered a whole pack of people around her to pray, not necessarily that the test will be wrong, but that their family will be able to celebrate the birth of their son no matter what the future holds.

4) I continue to enjoy the Special Needs Siblings Saturday posts at The Squashed Bologna. Mid-October, Varda's guest blogger was Michaela Seafoorce. I ready her SNSS post, but also followed Varda's advice and read two of her posts on her own blog here and here. I have been thinking a lot lately about peer advocates and how to find them, how to teach them, what to say. Michaela is just one example I've looked at. More on this in the weeks to come as I get my thoughts together...

5) I am kind of shaking my head these days in disbelief that I'm the mom of a second grader. It's all going by so fast. Laura Shumaker's post at City Brights about the transition to adulthood was a wake up call...time will continue to fly by and one day the child will be the adult. What then? The only thing I can do at this point is to continue to try to build in the skills and support that she will need when we get there a dozen years or so from now.

I hope you will enjoy all the links as much as I did, and if you visit do let them know you found them through The Simple Life.

Sunday Digest 34

Here's the best I've seen while scouting around...still horribly behind on blog reading, but I was caught up on laundry...briefly...one day last week.

1) Sometimes you need to walk a mile in another person's shoes. Sometimes you just need to read a very passionate blog post. Even other special needs parents may not always "get it" when comparing worries. Check out this post by my fellow 5 Minutes for Special Needs contributor, Heather P.

2) I loved this post at Autism and Oughtisms which so clearly explains how even the verbal child on the autism spectrum is affected by language delays and communication challenges. I have tried to explain this in some of my own posts, but this mum (from New Zealand) says it so much better.

3) Having just celebrated the 4th of July, it seems fitting to spend a couple of minutes supporting our military families who are also special needs families. You can read this post at Hopeful Parents by Diary of a Mom to find out how you can help.

4) I'm still loving the Special Needs Sibling Saturday series over at The Squashed Bologna. Varda has located some of the best parent bloggers around to help us see the intense sibling relationship through several new lenses. Read the latest here and the whole series here.

5) And I'm cheating a little because I'm posting late and Tara over at kidzorg posted her Monday story early...Ever wished you could have one of those reality TV shows come and redo part of your home? There's a charity that does this for children with special needs...you can read about it here. [We don't need a makeover so much around here as someone with some insane organizational skills...in case any reality TV shows are scouting for story ideas...just sayin']

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. 

Sunday Digest 30

Sunday Digest is turning 30...and it's Easter evening, after a long busy weekend, so this is going to be short and sweet. Sunday Digest needs its beauty sleep and so do I. These are the sweetest links I've found recently. Visit these other sites and let them know you found them through The Simple Life. Thanks!

1) One of my favorite fellow autism mom bloggers (Autism and Oughtisms) posted this review of her son's first term at a special needs school. She is in New Zealand, so their system is a bit different from things here in the States, but it is lovely to hear about how they have found just the right program for him. My dream for every child, special needs or no.

2) One of my favorite adults with autism bloggers (Reports from a Resident Alien) posted her ideas about disability and difference. I love getting her inside the disorder perspective.

3) Hopeful Parents is a group blog that has a wonderful set of writers from a variety of families affected by all sorts of Special Needs. Spectrummy Mummy posted a story about rewards for her daughter and the unintended rewards for herself, too. Very encouraging.

4) Another fellow autism mom blogger (Squashed Bologna,) who I particularly love following because she is also dealing with sandwich generation stuff like our family, has started a series on all of the issues surrounding siblings with special needs. So far what consequences we've had in this arena have been felt by us as parents more than our kids, but I am reading with interest for future days when this will be a hot topic around our house, to be sure.

5) My fellow 5 Minutes for Special Needs contributor Lee, shared a suggestion from his family's experience... Family Game Night. So far we opt for movie nights, but I hope we can add this to our repertoire. Lee mentions several benefits that would be really helpful for our kiddos.

That's it! I did also want to take this opportunity to welcome my newest followers. Thanks for joining the journey here at The Simple Life. I'm always working a few kinks out here, so please forgive the cyber-dust if you happen along when I'm mid-renovations. In particular this post should debut my use  of intense debate to manage comments. This should allow me to reply directly to commenters, which should be a lot of fun. I enjoy doing this at 5 Minutes for Special Needs. I'm still playing with the look of my banner, too, so if you're back in the next few days and it looks different, it's still me! Feel free to let me know if there are topics you'd like me to write about or if you have other suggestions...very open to input over here. Easter Blessings to you!

Sibling Rivalry

Several weeks ago a regular reader (I do have a few!) asked me to write a post about sibling rivalry. Once again I must emphasize that I am no expert on this subject. I just live with three kids who have the social skills of 3-4 year-olds, two of them due to age and one due to the challenges of living on the autism spectrum. I have some basic observations from this experience and a few "rules" that I follow to handle things in my own home. I thought I would share these and also open the discussion (as always) to hear others' thoughts on this important topic.

First, one key thing that I did not understand about parenting until after I had three children is that the "currency" of childhood is parental attention. The amount of time you spend worrying about, thinking about, planning for or handling your various financial issues will give you a starting point for understanding how your kids feel about your attention. Sibling rivalry is a direct extension of this kid-economy. An only child has a monopoly on parental attention. They have to compete with your vocation and your hobbies, but when the "goods" are handed out they get it all, baby. Siblings must divide the booty, and this is the beginning of the problem.

Second, attention can be distributed in many forms: gifts, praise, conversation, time playing together, and even discipline, to name a few. There are many demands on a parent's time (way to state the obvious!) and while children don't calculate out how to insist on their "time" with mom and dad, they have a real need to gain your attention. If they can't get time playing with you then getting some attention by misbehaving is an acceptable option in their book. It's important to "pay" attention in positive ways in order to prevent negative attention.

Third, there are many demands on a parents time (I said it again!) and you can't interfere with every kid squabble that comes your way. You need to work, clean, cook, sort the mail, read the mail, eat, sleep (once in a while), and a whole long list of other stuff. If you stop every five minutes to get your kids happy with each other and you, you'll not even get through the first step.

Keeping these three observations in mind, what I *_try_* to do around here is the following:


Spend time with your kids one on one. Your kids need to spend time with you individually to get their attention tank filled up. It doesn't have to be much; 5-15 minutes of one on one time with you each day can go a long way toward helping your child feel special. This time needn't be some major affair. Include them in what you are doing (see list above) or get involved in what they are doing. I've been realizing how important the 5-10 minutes I spend at school in the morning with my daughter is right now. She wants to show me little things in the classroom, but mostly she has my undivided attention, and she eats it up. 

Spend time with your kids together. Your kids need to spend time with you as a group to practice sharing your attention. This is an excellent opportunity to put skills like taking turns, sharing, and thinking about others. It might not look pretty right away, but as you practice with your kids (you need the practice, too) you will develop systems and strategies that work for your family. We literally take turns and use all of the language associated with that skill when we're playing with all of the kids at the same time. "It's Sissy's turn, and next is Bubba's turn." "Good waiting, now it's your turn." "You can be next." "One more time and then it is Sissy's turn."

Talk about it. I think it is okay to tell your kids that they need to share you. Explain that you want to spend time with all of them, and that you love all of them. Ask how they want to spend their time with you, but make it clear that you belong to everyone.


Give them some words to use. During your play time with your kids you can help them learn some solid ways to avoid and resolve conflict. Skills like taking turns and sharing avoid conflicts. "Using your words" can help resolve and respond to conflicts. When there are problems while you are directly interacting with your kids you can help them resolve things in a positive way by modeling and encouraging positive verbiage. "I'm Sorry" "Can I have a turn?" "I'm not done yet, but you can be next"  and "I want to play by myself right now" are all useful tools for a child to have in their conflict resolution toolbox. Hopefully they can transfer those skills to times when you are not involved.


Let them sort things out on their own... to the extent that your children are capable of doing so, and only you can judge this. When our twins were in their first couple of years we closely supervised our oldest daughter at all times with them. As the twins have gotten bigger and more able to defend themselves, our direct supervision has reduced. We are always at least indirectly supervising - keeping an ear out for growing friction. We step in when the conflict is truly beyond the kids' ability to resolve it, but not before. Some amount of conflict and bickering is normal. Interfering with every squabble is not only impossible, but will send your kids the message that they aren't capable of figuring out how to resolve their own problems. Supervise, closely if necessary, to prevent truly aggressive responses, but let the verbal fur fly.


Divide and conquer is not just a military strategy. Sometimes kids really need to play by themselves, but they may not realize it. If you find yourself intervening a lot, it may be time to enforce some separation. Have one kid play in their room and leave the other in the play room/living room/outside. It's important if you do this that neither kid seems to be gaining parent time or attention by the division. In other words try not to put one kid in the room you are in while the other is exiled to their room. The point of this is not to punish one child and reward the other, the goal really is just to give them some time to regroup. It's not a time out, just some time apart. The twins especially need this sort of separation sometimes because they spend so much time together and they seem to think that they always need to be together, but after a brief separation they play together much more nicely.

Sibling relationships are challenging, to be sure. It's important to remember that your job as a parent is not to fix everything, but to help your children learn the skills they need to get along with each other, which is the first step toward getting along with people outside of their family, too.


So what strategies do you use to help your kids learn to get along? I'd love to hear your ideas...

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!