Rambles Feed

Full Disclosure Friday: Autism Siblings ROCK

Two boys

Full disclosure: Life with an autistic child is challenging ...

But as parents, we are blessed with a deep and unconditional love for our child as well as (not always, but often enough) the mental and physical reserves we need to weather what this life - and this child - throws our way.

As for life with an autistic sibling, however ... well, that's a whole 'nother kettle of fish.

To put it plainly ... my greatest joy in life has been being a mother to my boys, but my greatest fear is that I've somehow bungled it. That perhaps I could have expended more - energy, flexibility, confidence, whatever - to have met the needs of ALL my boys better than I have. That when Bill and I faced the challenges of autism parenting, we could have been braver or more open-minded. That we let our fear (and perhaps lack of sleep) make the decisions for us more often than not.

I struggle with guilt - not all the time, but often enough - that so much of our family life has been shaped by the pressures of Earlybird's autism. I worry that our older boys had a childhood that fell short in significant ways, or that they missed out on the life-shaping kinds of experiences their peers probably enjoyed ...

We don't travel. We don't eat out. We rarely go to the movies ... or museums ... or the town parade. They've been to see fireworks ... once.

And that's not to say that we haven't been aware of these omissions (acutely so) but I hesitate to say, "Well, we do our best." Because I'm so afraid maybe we haven't.

We are, however, getting better at this, because finally we are getting the right kind of help and figuring out ways to make things happen that we couldn't before - for Earlybird AND his brothers.

But as for our older two boys ... well, they're young men now. Their childhood is over. And though I feel it was a good one - full of love, togetherness and home-centered joy - there were times of turmoil, too. A lot of tiptoeing around their younger brother's moods. A lot of activities that had to be missed - or seriously curtailed - because Mom and Dad were simply not able to manage them. (Logistically or emotionally speaking, depending on the day.)

How often did they surpress a need - or a dream - because they could see how stretched thin their parents already were?

I've often said our older boys have gained truly great gifts as the brothers of an autistic person. Through the years they've had ample opportunities to practice such virtues as patience and tolerance, compassion and understanding ...

I'm sorry we can't go to the pool party, but Nana can't watch Earlybird for me and there's no way we can take him.

I'm sorry we can't make it to the beach today (even though we've already driven halfway there) but your brother is melting down and we need to turn around.

I'm sorry I can't come inside and mingle with your friends' mothers - EB needs to stay in the car, and therefore, so do I.

They are the least demanding young men you could know. They understand. They accept. They never-ever make us feel we are cheating them. And yet ... still, I worry.

Did we put them first, too? Did we honor their individuality? Did we meet their needs? Or did we rely on their easygoing natures a little too often?

Anther gift they've earned through the years is that they have a keen sense of acceptance - they do not judge. Because they KNOW firsthand that you must always give someone the benefit of the doubt. They know better than anyone that the full story is not always what can be observed at first glance. 

And while they may not always be compassionate towards their brother (they are human after all!) they mostly always keep their tempers in check. Because they've understood that they are the older brothers ... they are the example from which Earlybird can learn. Above all, they have been an incredible support to Bill and myself, especially perhaps since the birth of our Little Bear.

And here's the crux of my full disclosure today, the latest worry to niggle at my heart ...

How will Little Bear handle his brother's autism as he grows up? How will it shape his childhood ... his development and personality?

When we found out we were expecting a fourth child, back in October, 2012 ... we were quite surprised - make that shocked - as well as extremely happy. But yes, a little anxious, too! I had so far enjoyed three wonderful pregnancies as a mom on the young side (at 26, 30 and 32). Now as "older parents" having a "geriatric pregnancy" (their words, not mine!) we were understandably a little concerned about some of the risks that come with pregnancies over 40.

There was my health to consider, the baby's of course, and then there was our family itself. As the parents of a child with autism we couldn't help but worry about the potential risks with this next child. We knew he would be special - each and every child is - but would he have special challenges? Older parents have a higher risk of having a child with autism, as do parents who have already had a child on the spectrum ...

When we were feeling brave we'd say, well, we already know how to be autism parents and we know this child will be loved and amazing and everything will be fine no matter what. When we were not feeling brave ... well, it was harder to feel so confident. We worried about how we'd handle the needs of an infant AND those of our special needs son. We worried about practical things like the number of bedrooms in our house and the hours of sleep we wouldn't be getting ...

But I think we worried most of all about how a baby would affect Earlybird. How would he handle this? How would his autism affect his ability to accept and embrace a younger sibling?

Well, Little Bear arrived hale and hearty (after a few agonizing minutes spent blue and being assessed by a team of neonatalogists) and EB surprised us with how easily he both accepted AND embraced his little brother ... but soon enough we found ourselves wondering:

How would Little Bear fit into our special needs family, an environment that on most days could be best defined as, "loving chaos?"

How would Earlybird's autism challenge HIM?

This is a question we're still finding answers to ... especially now that Little Bear is nearly five years old, and just such ... a little person. Aware now - sometimes too aware! - and full of observations and opinions and energy and needs ...

But this post isn't about our answers ... we're still working on those. Every day I am keenly aware that EB's autism is quite apparent to Little Bear - who is also keenly aware that his brother is different. And sometimes that's a good thing ... and sometimes not. 

Already Little Bear is learning that EB can't always help his behavior, and that just because EB does (or says) something, doesn't necessarily mean it's ok for him too. Our youngest son is what you'd call - ahem - a very strong-willed child, and so I think this will be a really good thing for Earlybird. Developmentally, EB is still quite young so as LB grows, they can learn from, and with, each other. With the support of their Mom and their Dad, as well as their much older brothers, these two boys will one day be the best of friends ... of that I am sure (mostly).

Moral of the story: 

Autism siblings rock

Every child is special and every child has needs ... what a blessing it is to be given such responsibility as parents. What a gift to be so trusted with these beautiful minds and dear hearts.

I sincerely hope that as Little Bear gets older, we only get better at this. That we're able to learn from our mistakes, and remember our strengths, and see past our limitations. That we will model for our boys a level of patience and resilience and compassion that they will emulate as they get older - because one day we'll need to rely on three of our boys to take over for us and see to their special brother's needs. As hard as it is to say this - think this - Bill and I won't always be here and that I think is perhaps the greatest fear of an autism parent ...

Above all I pray we may continue to find the kind of help we need - whether it be from family, friends, therapists, medicine (or most likely a combination of all) - that supports not only Earlybird's progress, but the health and vitality of our family life, too. This is what I hope for most of all.


Well everyone, thanks so much for letting me share this part of my life with you all. I know I rambled on rather long, and I could probably spend another few hours picking back over this post and making it read a little smoother, but alas ... I'm afraid my computer time has reached its end! So for now I'll wish you all well and a peaceful day (or evening) ahead ...

Take care of yourselves and your loved ones, my friends ...

See you all here again very soon ...

Friday Odds and Ends


Well, my posting plans went completely awry this week! Busy-ness got the best of me, I guess. It was my turn to host Book Group, so I found myself reading every spare minute I got - taking notes, preparing questions, etc. Our clubs met yesterday afternoon; in Crackerjack's group we discussed Hoot, while Bookworm's teen group chatted about the Maximum Ride series ...

(By the way, speaking of books - don't forget another Barnes & Noble Educator Discount Week begins tomorrow! Anything new on your can't-wait-to-read-list?)

We also had a late night Wednesday - I was a chaperone for a "Night Hike," that the older boys participated in. Really fun night! Pizza first, then as the sun set (beautifully, I might add) we headed into the woods where we hiked for an hour - with 17 kids, 5 adults and plenty of flashlights to see by. Kind of spooky, a little treacherous in spots - but so very cool. The waterfall was my favorite part. :)

And soccer started this week - our first game's tomorrow! Bill's coaching Crackerjack's team again this year (with my brother as co-coach and Bookworm as coach's assistant). I'm team "secretary," lol - photocopying schedules, field maps and fielding messages from players who need rides, etc. The weekend weather looks to be beautiful so it should be a great season kick-off!


Now, unfortunately, with all this running around, Earlybird and I didn't get to do many of the "Eggs and Nests" activities I had planned. So I'll stretch that theme into next week (which is tentatively our "Spring Cleaning" week). I know I've said this before, but "more on all that soon." :)


While I'm here I'd like to post the delicious Penuche Frosting my mum used for the Rose Sunday cake. This is for Jennifer. :)

6 tablespoons unsalted butter

1/2 cup firmly packed brown sugar

1 1/2 tablespoons milk

1 cup confectionary sugar

1/2 teaspoon vanilla

Melt vanilla in saucepan. Add brown sugar and stir until blended. Slowly add milk, mix well and bring to boil. Cool 10 minutes. Add confectionary sugar and beat until smooth.

This frosting - atop whatever cakey vehicle you choose - tastes especially divine with a cup of coffee. The flavors together remind me of a caramel latte. Yum.


My mum brought over some small picture frames for me yesterday, and among them was this - my 2nd grade school picture! The boys got a kick out of seeing such a "young" Mama, but Earlybird was insisting it was a picture of Crackerjack, lol! (Which, understandably, didn't please CJ too much.)


(I had long hair for most of my childhood, but this was that "Dorothy Hamill" so very popular in those days. And just look at those teeth, lol! This was pre-braces, obviously.)


Now, both Mary and Lynette have recently left comments about planners ... this is the time of year when the academic planners start showing up in the shops. Blue Sky was my favorite month-at-a-glance planner for years - and I'm always tempted to jump ship (new planners are like my kryptonite, lol) - but for now I'll stick with my homemade binder. It's working well for me so I'll keep plugging on. :) I do need to pick up new file folders for the crate, however - I do the change up next season (May-June) so I'll be needing fresh supplies very soon!


And before I go, I'd like to report in for Elizabeth (and anyone else who suffers from fruit flies as we do) that "Petey," our Venus fly trap, is not doing too much for the situation. Not yet, anyways. At last count - and to our best knowledge - he's eaten only one fruit fly so far. I'll cut him some slack, though - he is only one plant after all - and the fruit flies number in the dozens at least! I will say, Bookworm has found fair success using a handheld vacuum to chase the little buggers down, and I'm considering trying something like this. I really must get these flies out of here before Easter - they are completely obnoxious in general, but especially when it comes to dinner parties!


Oh, and one more thing! I can't believe I almost forgot to tell you all about this ...

Last week, Erin left me a comment and linked me to an Etsy shop featuring lovely wooden saint dolls: Saint Anne's Pixies. You simply must take a look. The tiny dolls are beautifully hand-painted and there are so many to choose from! Something for everyone, very reasonably priced and a portion of the shop's profits go to Food for the Poor. I ordered a "Saint Francis" for our nature table and (shhhh ...) a "Saint Emily" for my cousin's daughter who'll make her First Holy Communion at the end of the month ...


Ok, so there are my "odds and ends" for this Friday. Rambling and random, but there you go. I hope your week has been a good one, busy or quiet, or somewhere in between. Thanks so much for stopping by ... I'll see you again very soon!


Saturday Rambles ...

Well, that lovely snow I mentioned in yesterday's post lasted only an hour or so - and it never amounted to anything much. Conditions stayed calm through the night, and this morning we woke to dry roads and quiet, cloudy, skies. The forecast is unclear - we might get a few inches sometime between now and Monday morning but I guess we'll just have to wait and see!

What all this meant is that my Saturday errands did not have to be put off. I had half -envisioned a quiet morning at home, with pancakes and cocoa and some birdwatching through the snowy windows. But we were able to get out, so once Bill got home from his haircut, I packed my purse with all my shopping paraphernalia and hit the road.

When do you run your household errands? Do you get things done throughout the week with kids in tow, or do you take advantage when your husband's at home - in the evening or on the weekend - to run out and get things done by yourself?

My errands today included ...


1. Stopping at the library to drop off returns, pick up some holds (and pay a wee fine). These were mostly books for our winter star study, but also some James Herriot for Bookworm and a nature book for me.

2. Running into the package store for a bottle of wine.

3. Picking up crickets for the fire-bellied toad, cat food for the cat, and birdseed for the  ... well, you know. :)

4. Popping in quickly to the bookshop for a few magazines (Zootles for Earlybird, Archie for Crackerjack and Family Circle for me.)

5. And then there was food shopping - the apex of all errands.

I always leave food shopping for last (obviously I don't want frozen foods sitting around in my car as I run around town) but invariably by the time I'm halfway through the store I've just run out of steam. If I don't have a detailed list in hand, I'm done for. This week, I'll admit, I had only a half-done list and NO MEAL PLAN to speak of. So I ended up buying a lot of food (because we were out of a lot of things - remember we were sick last week) but I didn't come home feeling like our weekday dinners were all sorted out.

I did however, come home with three boxes of Girl Scout Cookies, so we'll call it a wash. ;)

And now I'm home, it's late afternoon and the snow is still falling (so very lightly). Bill is taking a much needed nap (EB couldn't sleep due to coughing last night, so they both got up around THREE). I've been informed there are important football games on tonight so it's best he rest up so he can stay up to watch. Before the games though, we'll have our Star Trek episode to watch. The (older) boys are SO into Star Trek right now! Before now they had not seen any of it (old shows, new shows, spinoffs or movies) but for some reason CJ recently became obsessed with designing The Enterprise (in Legos, natch). I watched Star Trek as a child with my family, and later on Bill and I were big fans of the 90s show (TNG). It really is a neat, entertaining and family-friendly show and it's fun watching it through "new eyes" so to speak.

Well, I'd be best be off - my rambling is keeping me well-rooted here in my warm family room, and suppertime is quickly creeping up on me. And speaking of, I have no idea what I'm going to serve for supper tonight (but that doesn't surprise you after my above confessions, does it?). Maybe I'll put it to a vote? Of course, I know what the kids will say: PANCAKES! This is always their vote when food is involved. And it's not a half bad idea actually - if I add in sausages and hash browns for respectability.

I hope you are all enjoying your weekend ... thanks so much for stopping by (and letting me ramble) ... I will see you all again very soon. :)