Making you laugh today

My husband - who is a big supporter of my writing - has been very busy, and just caught up on a couple of weeks of blog reading. "Good stuff, really good work you've been doing lately." he told me. Then added the caveat: "You might want to post something funny soon."

In other words, it's gotten a wee bit heavy around here lately. Can't argue with that. It's true. And while I do genuinely feel the need to lighten things up on the blog, I can also only work with what I've got, and I know I just don't have a funny post in me right now.

Fortunately for you, I have friends. Funny, funny friends. And it turns out that I, too, am funny when I'm yakking with them on social media (translation for my Luddite friends - murdering time on FaceBook and Twitter).

And one of these cyber-friends (just as real as so-called "real life" friends, don't you believe otherwise) has written a hysterically funny post on "Ways to make your next IEP awesome."

Yes, this is "awesome" with tongue firmly planted in cheek. Because IEP Meetings*? Well, the term "torturesome" comes up much more often than "awesome" -- unless you take these ideas to heart, because then you too could have the funniest IEP meeting ev-ah!

So, go! Read! My friend is Lexi Sweatpants and her blog is Mostly True Stuff.

The post: "Ways to make your next IEP awesome."

And if you look down to the bottom to see the crowd of bloggers who offered up suggestions for this post, who were part of the autism brain trust, as it were, you'll see my name listed. Two of them come from me. Whoo-hoo!

There's a third one I came up with that didn't make it on to the list, and I'll share it with you here, as a little bonus: "Wear an eye patch, and every time they look away switch it to the other eye."  You're welcome.

So go, visit Lexi and read all of the rest and get your laugh on. I promise I'll be funny again here, some time soon. (But probably not tomorrow when I'm telling you about bringing my nephew Simon and his girlfriend to see Mom today.)

*Note: If you don't know what an "IEP" is? (First off, consider yourself incredibly fortunate and know I envy you.) It stands for "Individual Education Plan" - and is basically the contract between the school district and the Special Ed student that spells out what is needed for the child to receive the "free and appropriate education" to which they are entitled as citizens of this nation.

It the sets educational goals for the student - both short term and long term. It specifies the classroom setting - inclusion or specialized classrooms; number of students and/or student-teacher ratios. It outlines the teaching methodologies, accommodations and additional therapies necessary to educate your child. And? It is legally binding.

If a miracle has occurred and you live in a school district that is truly seeking to do right by its needier students, this can be a wonderful thing; written as a true collaboration between the family and knowledgeable educators, creatively coming up with a great blueprint for your kid's education.

And if you have a Special Ed kid, and have sat through an annual IEP meeting, I will pause now for the laughter and/or tears to subside.

Because in 99.9% of the cases I know of, that is not the case, and it becomes instead a battleground wherein the family tries to get what their child needs written into it while the school district tries to eliminate as many services as possible and write the thing so vaguely that you have nothing to hold their feet to the fire with, when they fail to properly educate your child.

A bad IEP meeting resembles nothing so much as negotiations between the White House and the Kremlin at the height of the Cold War. It can get ugly and mean and above all ridiculous. You walk out of a bad IEP meeting ready to go to war because people who do not know your child are planning his education, not with his best interests in mind, but hell bent on their singular goal of saving the school district some money. At the expense of your child, who is just so much collateral damage.

And then you fantasize about doing some of the things listed in Lexi's post, instead of grinding your teeth while trying to smile and appear reasonable. 

OK, I'll shut up now, because I have clearly stopped being the least bit funny, and am at risk of turning into a giant buzz-kill. Mea culpa. Go read Lexi and laugh. G'night.

Sandwiched

It's been ten days now since my mom fell, broke her hip and landed in the hospital via the ER. And thus my second weekend being completely torn between my mother's and my family's total need of me.

To say I am nearly being ripped apart by this is an understatement.

I am so sorry to still be here in this space, neither delighting nor entertaining you, my readers. I like being funny. I miss being funny, sweet or lyrical. I even miss thinking about autism nearly all the time.

If you're newly visiting my blog and want something other than this grim, gut wrenching sandwich generation, ill, elderly and rather broken mother in the hospital stuff, might I suggest you read some old posts of mine? Try "Best Squash" or "The Alphabet Posts" in the tabs above. Or maybe click "Humor" from the label cloud to the left. (Or click my shiny hotlinks.)

And, for people who actually want the update on my life, my mom:  She's hanging in there. We're both exhausted.

They moved her to the rehab unit yesterday, and I'm not sure she was quite ready, but a bed was open so... she went.  Physically, she is out of immediate post-operative danger, but the rehab is going to be a long haul for her.

She's still in a lot of pain. And she's very up and down.

When I show up, I never know if I'm going to find with-it, upbeat, funny, joking with the nurses Mom, or confused, miserable, groaning in pain and begging to go home Mom.  And sometimes I will show up to find one type, and then she will emerge from a short nap, the other.

But show up, I must. If I am not there, my mother does not eat.

When I arrive a look of relief usually washes over her; she grabs my hand, holds it for all the world as if she's never letting go. And then three minutes later she's drifted off to sleep again, the hot cocoa I've brought her abandoned two sips in.

Today was my mother-in-law's unveiling. I was heartbroken that I couldn't go to the cemetery with my husband and the rest of his family. But it was to be the whole day, and I couldn't not show up at my mother's bedside.

Also this: while my mother is out of immediate danger, her inevitably fatal cardiac condition is progressing: critical aortic stenosis; which is the same thing that killed my father. (Which is why I am encouraging Ethan to go into hi-tech medical research and invent nanobots that can repair aortic valves. Just in case, you know?) This could be her last hospitalization. This could be the beginning of the end, which is surely coming, in the not so distant future.

I must push to be as there as possible for her. Each moment is precious. Even if she is sleeping through most of them right now.

Today was another one of those days. But they're all those days, these days.

Today Jake melted down because his video game didn't work right, and he didn't want to play another. And then, he had to take his glasses off because they were all foggy with crying and he sat on them, bent them out of shape. And then he was crying because he wanted his glasses - and the store that fixes them opens at noon earliest on Sundays.

And Ethan had undone homework hanging over our heads like an anvil, and I could not let him go off on a playdate until it was done. And Jake's vitamins needed to be poured for the day, because neither the sitter nor my husband can do that.

And so this morning the clock was ticking and I had not showered / dressed / packed my bag. Because there is always something else that needs to be done but I can't do it all and also get to my mother's side as soon as I wish.

I can't remember my last un-squashed moment.

But when the big one comes, when I am no longer squashed by my mother's demands but rather by the thousand-pound chest-weight of her absence, then I will long for these days when she was still here and I could still be with her, could still do for her.

And so I do, I do, I do.

And I sit and hold her hand.

This is Not a Post

This is not a real blog post.

I just don't have time for that right now. Neither the time nor the energy. So I'll just sketch things out. You can fill in the details.

I thought things would slow down after Listen to Your Mother had come and gone.

Not hardly. There's always something. All the little things I didn't do in those last frantic weeks of preparing for the show? Still needed to be done.

Mountains of laundry. Sinkloads of dishes. A living room that looks like a toystore threw up in it. The house elves did not come in and magically take care of all that shit.

And in the midst of it all I decamped for an overnight to Philly to hear THEIR own LTYM.  A one day road trip with my producing partner Holly, the Culture Mom, which couldn't have been more fun.

The wonderful LTYM - Philly Producing Team

But I returned to the same workload I had left, and then some. (Dad in charge. Need I say more?)

And then there was Mothers Day. More work. A brunch in New Jersey with the in-laws.

If this were a post I would tell you how tough it was this year on Mothers Day, being with my mother, who is a mere ghost of herself. She has forgotten who nearly everybody is. She could barely walk, gets less steady on her feet each passing week, yet won't use the rollator walker - of which she has THREE - out of stubborn pride.

Mothers Day

It makes me really sad to be around her. I want my Mommy back. Even the befuddled, filter-less mom I've been taking care of these past few years was still feisty, funny. I'll take her.

This subdued old woman who just sits and vaguely smiles with nothing to say and no idea where she is or why she's there? Just breaks my heart.

She appreciated the sunshine and greenery on the backyard deck. She smiled at our niece's toddler twin boys who so remind us all of toddler Ethan & Jake, simultaneously so long ago and just a blink away.

But she no longer plays with my boys. Doesn't know how to talk to them, their interests incomprehensible to her now limited comprehension.

If this were a post I would tell you about how Jacob has developed a whole new panoply of annoying habits this spring, including a frequent maniacal loud giggling laugh that we call "the silly laugh" because calling it "the maniacal creepy laugh" is just too... creepy.

I would tell you how the medicine that was helping Ethan to focus all year started to make him paranoid and angry so we had to stop it, and now we're back to square one.

I would tell you.

But I'm too tired to write that post. You'll have to fill in the blanks. I'm sure you can.

Now, sit down here and take a little nap with me. There, that's nice. And when we wake up we can fold some laundry. And I will tell you...
 

I am linking this up with Just Write, because this was ... just written.

The Burnout Factor at Hopeful Parents

Well, today is the 10th of the month, sort of. (What? Like you've never post-dated a post before. You haven't? OK, my bad.)

In any event, I'm tired. I'm going to bed (finally). But you should head on over to the Hopeful Parents site and read my 19th post there: Burnout Factor

And while I could blather on and on here... Why? Really?

Turning off the spigot.

Nighty-night. See you tomorrow.



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SNSS: New Baby and New Beginnings

Today's guest, Jessica Severson, of the blog Don't Mind the Mess, is unique as she only has one child. Yet. She is, however, at the time of this posting, pregnant with child number 2, a girl. 

Jessica's two and a half year-old son is on the Autism Spectrum, and thus when her daughter is born this winter, she will be born a special needs sibling.

Jessica writes about her parenting journey in blog, both as it pertains to autism and all the usual toddlerish stuff, too. She also writes about the other interesting and entertaining things that cross her mind, including popular culture and yummy recipes. She is funny and intelligent and is a pleasure to read.

Come experience that here, now, as she talks about the hopes and fears that come with the expansion of a family that already includes autism:

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New Baby and New Beginnings - by Jessica Severson

I used to want 4 kids. In the early months after my son was born, I thought 3 wouldn’t be so bad. By the time he was diagnosed with Autism at 17 months, I didn’t know if I could handle 2.

I used to be jealous of families where the Special Needs child was born 2nd or 3rd and it would be easier for them to make family planning decisions. For us, with our first child diagnosed with Special Needs and a heightened risk of any other children also having Special Needs, the decision to have more children was fraught with worry.

I used to think that if I had another child, I would want to wait until my son was in school. I didn’t think I could handle two young children where at least one had Special Needs.

And yet despite all of that, here I am, 6 months pregnant with my second child. My son will be just past 2 and a half when his sister is born.

Even stranger, despite the years I spent worrying about having more children, I feel really happy about it.

The best I can tell is that I have worried about as much as I can. I’ve reached the point where I know I want to try at least one more time. I’ve stopped looking for the perfect time just like I’ve stopped waiting for a perfect child.

It is happening. And if we find ourselves in a worst-case scenario, at least it won’t be anything really new. We have been around the block. We have handled it. We can do it again.

That’s not to say I haven’t worried at all. An early test showed an increased risk of chromosomal defects. Those first few hours after I heard the news were some of the darkest I’ve had. The truth is, no matter how ready I feel to handle another child with Special Needs, the hypothetical idea of it is so different than the actual truth of it.

My amniocentesis came back perfect. But it was a bit of a wake-up call. I was idealizing the prospect of my second child. I was already imagining her as neurotypical and normal. She isn’t an opportunity to do things better, she’s a child just like any other with her own unique set of needs.

Teaching my son to prepare for his sister’s arrival has been more fun than I expected. He has learned the word “baby” and even knows to associate it with my belly. His therapists have included programs where he hugs and kisses a baby doll. We are working on treating things gently. A lot of it is pretty typical 2-year-old stuff.

If anything, I feel lucky that my son will still have the comforting rituals of his therapy hours to get through the early transitions. I feel lucky that my family will be there to provide him with play and structure.

And our decision to have the baby this early means my son will still have his Early Intervention therapy for 5 more months after the baby is born.

There’s never a perfect time to provide your Special Needs child with a sibling. Especially if they bristle at change. But that is what family is for. And knowing that my children will be able to be a support for one another comforts me.

Maybe it won’t happen for decades, but someday they will understand each other. Someday they will be able to stick up for one another. And disability or not, they will be able to relate to each other.

So far I haven’t let my son’s needs get in the way of a vision for the future of my family. What do I really want for all of us? I want us to be close to each other. I want us to trust each other. I want family gatherings to be joyous occasions. I am comforted knowing that my son’s needs don’t have to get in the way of any of that.

I’ve learned from my son that taking things a little bit at a time is the way to go. I don’t expect that to change when his sister comes. If anything, I think I’ll be able to treasure both of them more.

I hope that having two different children means I can appreciate two different personalities. Of course that means two different sets of weaknesses and frustrations, but it also means two different sets of strengths and joys.

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I love how Jessica is sailing forth into this brave new world of parenting more than one child with optimism and a heart full of love, knowing there will be challenges, but preparing to meet them with good cheer and fortitude. It is inspiring.

Also, full disclosure, I actually met Jessica in person at the Boston Bloggy Bootcamp conference last May and she is just as delightful in person as she is on the internet.

Now that you have read Jessica here, you are clearly going to want to follow her home to her blog Don't Mind the Mess and dig in.

You may want to start here, with how the stresses related to parenting and her son's autism lead to a spiraling depression. 

Try this post about the guilt that can come on when you and your child are actually doing better, or this one about the day Jessica got the results of her amniocentesis back and found out the new baby was a girl, and OK chromosomally.

Also, go follow her on Twitter where she tweets as @jessicaesquire, go like her (I know you do) on her Facebook fan page, and finally, go see the stuff SHE likes on her Pinterest boards.

Jessica, thanks so much for sharing your thoughts and feelings with us here at SNSS, and wishing you much happiness and joy as you bring your new baby girl into your lovely, loving family.


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SNSS: They are Both “Special”

Today's guest, Shelley Kramm, is a mover and shaker of the Special Needs Advocate variety. As the Playground Fairy she has been at the forefront of the movement to get inclusive playgrounds built in our communities.

Shelley blogs at I'm Still Standing where she is a font of information, as she writes about wellness and special needs families in general, as well as her own very special family in particular.

And, while Shelley is the mother of older children, she still recalls her daughters' beginnings like it was yesterday.  

Come read her reflections of her girls' rocky beginnings and their supportive special relationship today, here:

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They are Both “Special” -  by Shelley Kramm

I have 2 daughters one who I would say is “special” and the other with “special needs” and depending on the day over the past 19 years I would say they have each switched those words several times…

Pregnancy and I do not agree; why I am not sure, my mother gave birth to 6 children over the course of 8 years. For me, not so much…

My OB-GYN actually called me “the girl with the little black rain cloud” throughout my first pregnancy. I spent the first trimester throwing up so much I lost 15 pounds.

I found out I was RH negative (the only thing in common with my mother) developed pancreatitis and major gallbladder issues, my amniotic fluid level seemed to drop to all time lows, and then my blood pressure started to rise and protein began to appear in my urine and I developed full blown Preeclampsia/Toxemia and was admitted to the hospital 3 and a half months before my baby was due.

So not like my mother!

To make a long story short, it was a traumatic birth, 36 and a half hours after my water broke with Pitocin I had a c-section and my first daughter was born at 32 weeks weighing 4lbs 6ozs with NO cry! NO sound… Nothing…. She was blue… resuscitated… ventilated… must have been due to the magnesium sulfate that was controlling my blood pressure and her “life.”

We named her “Sarah” meaning “Princess”… Little did I know how that special Princess would turn into a Queen. The doctors told us she would be “deaf, blind, retarded (I hate that word) and never live on her own.” However, 24 hours later she was pulled off of these things in the NICU and two and a half weeks later we both went home to begin childhood.

Three and a half years later, I found myself again in the same predicament of a not so great pregnancy with Preeclampsia/Toxemia and again at around 28 weeks was at my OB-GYN with Sarah when my doctor shook his head and informed me that I wasn’t going anywhere… It was time to check myself into the hospital as the Preeclampsia/Toxemia was getting out of control and I had to be monitored.

There I was with my little child laying in my hospital bed wondering about my next. The birth, after a prior failed induction, we knew would be a c-section. So we prepared as the operating room prepared. And on February 6th six weeks before her due date Hadley entered the world with a cry that I will never forget.

She cried!! I can remember that cry as if it were yesterday as I was so thrilled to hear it thinking “thank god” maybe we would be spared the drama of the last birth and first few hours... However, a preemie and a tiny little baby weighing 3lbs 16ozs; she was the size of a football.

Sarah was waiting to see the outcome patiently; did she have a little brother or sister? And as she was whisked away past Sarah to the NICU I think she wondered… “Uh oh, what does this mean?” Sarah had several friends by now who had new brothers and sisters, but none of them couldn’t “see” their little siblings after they were born…

On Hadley’s 6th day of life she suffered a bilateral brain hemorrhage which changed her life and all of ours in one moment’s time. From that point on Hadley’s life became about medications, and doctors, and monitors, which Sarah didn’t understand. What 3 year old could understand this?

When Hadley finally came home from the hospital, a month later, she had monitors attached to her and a nurse who helped with the therapy and medications. Sarah would walk in and out of Hadley’s room to see her, and every time she walked out she would “smell her hands.”

I’m not sure what that was about and as Sarah grew older I asked her about it, and she, as a lot of children do, just didn’t answer. But I feel that perhaps she thought that there was a “smell” that might rub off on her and therefore she could “catch” what Hadley “had.”

I tried to keep our family life as “normal” as possible, and as our children grew I took them to the local park to play. Not such a great idea, and one day I got pissed off and came home and told my husband this had to change, my children could not play together. My special little daughter Sarah wanted to push her sister around and “play” with her, and this was impossible with woodchips and her stroller/wheelchair.

Hadley’s life was complicated enough with daily visits from physical therapists, occupational therapists, speech therapists, cognitive therapists, doctors, and a daily regime of medications which tasted oh so yucky.

Sarah would always defend her little sister’s disability to people who stared at her, children as well as adults. I became the brownie leader for Sarah’s troop and made teaching children about special needs a big part of our weekly lessons as Sarah thought it would help other children learn about special needs children and how they are not so different from themselves. Sarah was always willing to spread the word on how we are all ABLE.

When Sarah was 14 she came to Kenny and me and asked if she could be in a pageant. We had not ever experienced anything like this and wondered where this was coming from, but as we thought about it we realized that Sarah’s whole life she has been either Shelley’s daughter, Kenny’s daughter or Hadley’s sister and she wanted her “thing;” she wanted to show the world she was “special.”

For the remainder of her teen years Sarah competed for numerous titles and was very successful as she showed the world that beauty comes from within and shared her platform of “we are all ABLE.” In 2005 after winning Miss Maryland Teen America she received the title of Miss Continental Teen America and spent the year raising awareness for the disabled.

I thank god everyday for my two daughters and the lessons that they have both taught me on the word “special.”

 Shelley's lovely family

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Shelley, I find it so inspiring that your older daughter is such a leader in fostering understanding of people with special needs. Wow, you must be so proud.

And now that you have read Shelley here you're going to want to follow her home to her blog, I'm Still Standing and read her there. 

Try starting with this post about How she went from designer to special needs advocate. Or this moving one about what it was like when her daughter got her first wheelchair.

Also read about her work as a Playground Fairy, how she got one of the first inclusive playgrounds in the country designed and built in Maryland.

And, since Shelley has already gone where many of us are about to tread (with great trepidation), you might want to check out her views on raising teens today.

Also? Follow her on Twitter where she tweets as @shelleyellen and go to her Facebook Fan Page for daily inspiration on your life with challenges, and let her know you like her, you really like her.

Shelley, thank you again for sharing your beautiful girls with us here today.


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SNSS: You Are My Sunshine

Even though she is not local, I have had the pleasure of actually meeting up with today's SNSS guest, Diane AKA Momo, TWICE so far this year. And I can attest to her being every bit as lovely in person as she is on her blog, Momo Fali.

Momo is the mother of two children: daughter Ali (source of the blog's title) a typical teenage girl, and her younger brother with a host of special needs. Momo writes beautifully, with much warmth and humor about life with her wonderful family, and her thoughts on the world around her.

To be the mother of both a teenage girl and a boy with multiple health and behavioral issues and to retain a sense of humor? That takes a special person, which Momo certainly is.

So come read this moving post about her children's evolving relationship, now:

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You Are My Sunshine - by Momo

I have two special children.

My daughter, Ali, was born 10 weeks premature and spent five weeks in the hospital. She weighed 2 lbs. 9 oz. when she was born and in 1998, that was one, tiny baby. We spent some time working with a physical therapist, but by 15 months, she had caught up with her peers in size, weight and development.

I have always called her a freak of nature.

When Ali was a toddler, her brother was born 7 weeks premature, with congenital heart defects, urinary reflux, severe GI reflux, eye problems and bad hearing. Special needs took on a whole new meaning. As he grew, we learned of OCD, PDD-NOS and SPD. Acronyms-R-Us!

We spent a lot of time, those first few years after my son’s birth, in and out of the hospital. He was a very sick baby and had 9 surgeries by the time he was 6 years old. Ali’s life was flipped upside down.

I read somewhere, long ago, that in order to make a child feel positively about a new sibling that you should refer to the baby as, “your brother” or “your sister.” I did that a lot and it worked for a long time.

I vividly remember my son being in pain and watching Ali sing to him. She usually chose, “You Are My Sunshine.” She was a fabulous big sister.

Sure, she ran from the room when he would choke and vomit, or excused herself to the hallway at the lab when it was time for a blood draw. I can’t blame the kid for that!

But, more often than not, Ali was a trooper just like her brother; at least during the medical phase of his special needs. When his health became stable, the behavioral issues came to the forefront. His quirks, she merely tolerated.

Then she turned 12 and she tolerated them no more.

Apparently, having a special needs brother is one thing, but having a special needs brother when you’re going through puberty is something else entirely. If you dislike your parents, then you will really dislike your little brother. Throw in odd behavior and it will be downright disdain.

My son not only annoys her, but he is brutally honest. This is fine, at home, when he’s telling her that she’s “bossy” (she is, in a big-sister sort of way), but in public it is clear that she would rather be anywhere but with us, out of fear that her brother will say something embarrassing.

They fight a lot, but there are fleeting moments when I see them playing together and my heart sings. I miss those, “You Are My Sunshine” days. Not the part where my son was so sick, but the part where Ali tried to make it better. Now, he sings to her (because he sings constantly) and she tells him to, “Be quiet! Gosh!”

She loves to read and, on her own, she chose a couple of books from the library about siblings of kids with Asperger’s. When asked, she jumped at the opportunity to sit, privately, with my son’s psychologist to talk about what it’s like to be a special needs sister. She is learning and speaking about her situation at her own pace, on her terms.

But, she will not talk to me about it and that’s okay. She’s almost 13. She doesn’t want to talk to me. You know why? Because she’s not the special needs baby that she used to be.

She’s a regular tween. Her prematurity didn’t affect her as it could have. Other than a couple of minor medical procedures as a toddler, she has grown, completely, into a typical girl. And, that’s a great thing.

Would I love to know what she’s thinking? Yes. Would I love to know what to say and do to let her know that her feelings are perfectly normal? Yes. But, as long as she can talk to someone about it, it doesn’t have to be me.

My job is to let her know that she is loved, to remind her that her brother can’t help embarrassing her and, when she, someday, realizes how fortunate she was to have grown up with a special needs brother, I will welcome her back with open arms.

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I love how Momo understands and accepts that her kids' relationship will change and evolve over time, trusting that it will fall back into a better rhythm someday in the future. And also her acceptance that her daughter may just not want to talk to her mother about everything at this point in her life. (Teenager - how that word strikes anticipatory terror in every parent of a younger kid's heart!)

Also, I have to say, that song "You Are My Sunshine" that serendipitously played a role in both last week's AND this week's SNSS posts? Terrified me as a young child. It made me deeply sad, made me sob and wail. Why? Have you heard the lyrics? "Please don't take my sunshine away... You have shattered all my dreams." But I'm over that now. Sniff.

OK, now that you have read Momo's lovely words here you're going to want to follow her home to her blog, Momo Fali, and read her there. 

Try starting with this post about her daughter that tells the story of the blog's name  or this one in which Momo shares some of Ali's incipient transformation into a teenager. (Yikes!)

To know more about Momo's son, read this post written to him on his ninth birthday, or this moving piece about the pain of watching him trying to play sports, but not quite being able to keep up, becoming invisible.

Finally, for the funny (which Momo has in spades) read this post about her wasabi gob of death incident when she was in NYC for the BlogHer Writers conference last month, to which I was an actual witness!

Also? Follow her on Twitter where she tweets as @MomoFali and go to her Facebook fan page and let her know you like her, you really like her.

Thank you Momo, for your friendship, and for this lovely, lovely post about your beautiful, special children.


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A Different Sort of Marathon

Yesterday, while top athletes who had traveled to my fair city from around the world ran 26.2 miles?

I… got out of BED!!!!

I… took off the PJs I had been wearing for 36 hours straight and GOT DRESSED!

I… FED my kids!

I… LEFT THE HOUSE to take Jacob to Hebrew School (the new pilot Special Ed inclusion program our synagogue started JUST FOR HIM – more on that soon) and got him there ON TIME! (Well, almost – only 3 minutes late, a world record.)

I may not be running in THE marathon, but I am running a sort of marathon in my life. The kind each and every special needs parent out there knows down to their bones. (And many plain old garden variety parents do, too.)

It’s the slogging through the day-in-and-day-out of caring for and about our special kids. It’s all that we do when we’re with them (talking and playing and supporting and scaffolding and watching and pushing them gently and coaching and coaching and coaching and holding our frustrations in check, smiling when we want to yell or sob; and, for some of us, taking care of their every physical need even though they have not been an infant for a decade or more; and, for some of us, wrapping our arms and legs around them tightly, enduring bruises and worse until the storm passes so they don't injure themselves or their siblings.)

And it's all that we do when we’re not with them (phone calls and meetings and research and more phone calls and strategizing and worrying and IEP meetings and phone calls to lawyers and more research and reports to read and reports to write and applications to fill out that make us weep as we list for the thousandth time all the milestones our kids missed and when we first noticed they were different and what we did about it.)

On a day like yesterday, when herculean feats are being celebrated all over the city, it's easy for me to slip into negative judgements of myself and my lack of lofty achievements.

I have been slipping in and out of a low level depression since last winter; some days, weeks, months closer to the light, others falling into shadow's embrace.

I need to go gentle with myself. To remember that getting out of bed and showering CAN be herculean in itself, when the tug to just disappear under the covers is strong and seductive.

My marathon is different, not less, than the one those glorious beings ran through the streets of New York yesterday.

And I need to run it every day.

And possibly for the rest of my life, if Jacob is never ready to launch.

And I am a different sort of champion.

And this can be enough.

For me, enough.

I am linking this post up to Be Enough Me Mondays over at the wonderful Just. Be. Enough.

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SNSS: Walking the Line

I don't know how to properly introduce today's SNSS guest blogger, to convey her awesomeness. She is Amy Hillis of the blog Transplanted Thoughts.  

Amy is an amazing mother and a wonderful, moving writer. She has also been through more tragedy than any other person I know, and somehow still finds life entertaining and amusing. 

What do I mean by tragedy? Amy has had seven children. Five of them are still living. The other two have been lost to the same rare genetic disorder that affects two out of her three still living younger children (the eldest two, from her first marriage, are now grown). 

When Amy began her blog, her youngest son David was sickly, but still alive, and those of us who read her followed along with his final days, filtered through Amy's anguished posts. He spent the last 5 months of his short life in the hospital, his mother by his side.

Theirs is obviously an intense environment, and yet Amy works hard to bring much balance and order, normalcy, joy and a sense of purpose into their lives. 

Read Amy's moving words, here, now, as she writes about the sometimes rocky relationship between Jacob, her unaffected son and his just-a-bit-younger brother, Jonathan, who is often ill:

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Walking the Line - by Amy Hillis

October 10th is a big day in our house.

It's the anniversary of my middle son's liver transplant. This year marks 6 years since he was given a second chance at life. Jonathan was born with a rare genetic liver disorder called citrullinemia. The only 'cure' - a liver transplant.

The road for Jonathan has been bumpy - speech delays, IEP's, hospitalizations and illnesses that 'normal' healthy kids would never have to deal with.

His older brother doesn't see the struggles that Jonathan has endured. Jacob only sees how much attention Jonathan receives.

Speech therapy, physical therapy, occupational therapy, home-care nurses, doctor's visits and time off of school.

And to rub it in a little bit more - cupcakes and celebrations on a day that's not his birthday or Christmas.

When the boys were smaller and Jonathan had to be hospitalized, Jacob would spend his time at Grandma's house. At first he loved going to Grandma's, but as he got older he began to see it as a punishment, as an unfair consequence of his little brother being sick again.

It was during this time that Jacob started to express a lot of anger towards his little brother. He would take toys away from him, hit him and yell in his face when he was unhappy about something Jonathan had done.

It was such a trying time on so many levels. Helping Jacob to not feel lost in the shuffle became just as important as getting Jonathan well again.

Simple things, like extra cuddle time, one-on one reading time or big boy 'perks' like being able to stay up later or having first choice on movie night. These things became part of our daily routine in an attempt to curb some of the anger and hostility that Jacob felt towards Jonathan.

As the boys have gotten older, balancing the needs of each has been like walking a tightrope. Each one crying "Unfair!" when they think the other is getting the lion's share of the attention.

Fortunately the further out Jonathan gets with his transplant, the less and less time we spend in the hospital, at doctor's appointments and with therapists. Outside of the everyday quarrels that 2 boys born not quite 2 years apart encounter, most of the perceived slights happen on days like October 10th.

A day I choose to celebrate even though at not quite 7, Jonathan doesn't comprehend why it's such a special day for him and for us. We celebrate because I want both boys to honor the life that was given and the life that was lost.

It opens up discussions on the season ahead. On being thankful for what we have and living our lives to the best of our abilities.

Jacob has worked through most of his anger towards his little brother. He is shouldering the responsibility of being the 'big' brother, the one who should take care of the younger boys, with great pride.

I see an empathetic young man emerging from the shell of the little boy who once cried "Unfair!" at being the one who stood in the shadow of his little brother.

I want to thank Varda for asking me to share a piece of our story for SNSS. Sometimes the ones left at home to carry on the every day have a harder job than the ones working through the illnesses and therapies.

Giving a voice to both can do amazing things.

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I am often amazed by Amy, how she carries on with life amidst the loss. She feels and acknowledges her sadness but isn't engulfed and destroyed by it, somehow manages to be there, fully present for her still living children who need their mother as much as ever.

What is most inspiring about her is her realness, and her willingness to share that with her readers. We see that she is some days sad and mad but also loving, humorous and even grateful.

Now that you have read Amy here, you are surely going to want to follow her home to her blog Transplanted Thoughts and read more of her family's story and her beautiful writing.

If you want to know about what happened to her first son with citrullinemia, who lived only 5 days as the doctors puzzled out what was wrong with him, read this post here: Introductions.

For an incredibly touching and sad moment when Amy's son talks with her about missing his baby brother David, and wants to make sure he is being looked after in heaven, read this one: Moon Talk (warning have hanky ready).

And then, because her tag line IS "Life's still funny" try this funny post about her sons' Sailor-speak (something I think all of us with boys will relate to).

Amy would also like it if you would come stalk her on Twitter, where she tweets as @transplantedx3 and on her Facebook Fan page, 

Thank you so much Amy, for bringing your beautiful words to SNSS today.


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SNSS: Fragile Brothers, Strong Sister

My SNSS guest today, Bonnie, has a lot in common with the other Autism Moms whose posts have appeared here. But she also has much in common with a very different segment of the Special Needs parenting population, too.  

That is because not only are Bonnie's identical twin sons on the autism spectrum, but they also have a genetic condition: Fragile X Syndrome.

Bonnie writes all about life with her 6 year-old twins and their older sister in her blog, The Fragile X Files, with love, compassion and honesty. 

Her wonderful boys are especially challenging, with aggressive behaviors born of their deep anxieties, major sensory issues and tremendous struggles with communication and language. Her older daughter Aliza is an amazing girl, compassionate and caring with her brothers, a mini-therapist, a true friend. 

Come read as Bonnie beautifully shares her family, bound by fierce love and loyalty, with us here, today:

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Fragile Brothers, Strong Sister - by Bonnie

I have identical twin boys with Fragile X Syndrome and autism.  They are six years old.  Fragile X is the most common known genetic cause of autism.  They are adventurous, hyperactive, adorable, aggravating, sweet, affectionate, anxiety-ridden, and very special.

But this isn't about them.  It's about their 8-year-old sister, Aliza.

Aliza's sibling experience is quite a bit different from most of her friends'.  Her brothers don't play with her much.  They don't tease her or mess up her room.  They don't take her toys.

They do pinch and sometimes bite her.  They scream and demand to get their way and usually they get it, because they are louder and more stubborn than she is, and let's face it - there are two of them.

She sees the world quite a bit differently than most kids.  You know "Welcome to Holland?"  She knows Holland inside and out.  She knows what sensory processing disorder is.  She knows what an IEP is.  She knows the procedures for ABA (applied behavioral analysis).  She knows hyperactivity when she sees it.

Other little girls like to play "mommy" or "doctor" or "school" with their dolls and their friends.  Aliza plays "occupational therapist."

She's extremely perceptive.  Her brother Zack has a tendency to reach out to strangers in stores, and pinch their arms.  If he's within reach of someone, more than likely they will be a target.  Aliza knows this and when we are shopping, she'll discretely put herself between Zack and other shoppers.  She does this, knowing he might very well just pinch her.

I can't tell you how my heart bursts when I see her do this.  Without my even asking her to.  I'm so proud of her I could explode.

Sometimes they are a real drag on her good times.  We end up leaving parks and malls and parties early because her brothers can't tolerate crowded or loud places.  I have tried volunteering at her school a couple of times when I had to bring the boys along, but they screamed, and it embarrassed her.

I didn't plan for her to be the big sister of kids with special needs. But, planned or not, she's taken to that role pretty well.  She not only reaches out to her brothers to play with them the way they play, but she helps them to find their way in this not-always-accepting-of-differences kind of world.

Her dad and I, along with her grandparents, work hard to make sure she feels special too, and gets plenty of opportunities to live her life fully, despite the ways her brothers disabilities limit our family.  Whenever possible, we take two cars to every event and outing.  If the boys have to leave, one of us stays with Aliza.

We try to make sure she gets to have as normal a life as possible.

Even though some days it's anything but.

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Reading this post, I must admit to feeling no small part of envy for how sensitive and caretaking of her brothers Aliza is. I know that every family is unique and that an older sister and a twin brother are very different entities. 

But still, I only hope that some day Ethan can follow in her footsteps, that he will feel more empathy and less antipathy for his brother. 

Having read Bonnie here, you'll want to follow her home to her blog, The Fragile X Files, and have a good read.

You may want to start with this moving post about how in the world to answer people who ask "How are the Boys doing?"

Or try this beautiful tribute to Aliza and her sisterly skills, or this lovely post about taking care of her sons, a meditation on sensory brushing.

Also, you should go follow Bonnie on Twitter where she tweets as @FragileXFiles and come like her Facebook Fan Page, too.

Thank you so much, Bonnie, for this sharing of your lovely, special family with us today.


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Goodnight Irene

Photo source: NASA Goddard Photo

I figure having shared my neurotic fixation on the coming hurricane with you (you’re welcome) I have to write about the actual event, right?

Well, here in my neighborhood, New York City's Upper West Side (UWS)? A nearly non-event.

We live on high ground with solid bedrock underneath, in a brick apartment building built nearly 100 years ago when things were made to last, well, centuries. We’re on a single digit floor, high enough to look at thrashing tree tops, but well below the strong shearing winds. Safe.

The drive to pick up Jake from camp and bring him back to NYC was a bit hairy, with bands of drenching rain coming out of nowhere and then disappearing completely. But it was mostly the tension of having to make it back before the bridges and tunnels closed (most never did) combined with everyone's anxiety, as well as my own, that made it intense.

Really, I've driven through worse thunderstorms. Two so far this summer, in fact.

And while I had called and e-mailed like the crazy woman I was on Thursday campaigning to get Jake's camp to close a day early (it did), I was sad to have to miss the closing ceremony planned for Sunday, which was to have been a lovely family event.

I had been hoping to connect with other local autism families and possibly even make connections with the parents of kids Jake had been particularly drawn to during his week, ever seeking to help him have a true friendship spark.

Also? I love any chance to hang out with special needs / autism parents. We're a big-hearted, tempered-tough breed, usually with a good sense of gallows humor (at least the folks I like to hang with have one).

And I missed that. It was more of a "grab your kid and run before the storm" situation. Packing had clearly been done in a hurry. And since 3 of the 12 kids at camp were named Jacob? Yeah, we have some other kids' T-shirts and I'm sure they've got some of my guy's stuff.

I still haven't completely inventoried what has gone missing yet. But the most important thing - the irreplaceable blue bear? Safe and sound with us.

Others have not been so lucky. My heart goes out to them

I have spoken with friends in the suburbs and the country without power, those whose children were deeply frightened by crashing trees and rising waters.

A blogger you may know - Kelcey of the Mama Bird Diaries - has been flooded out of her home, and for God knows how long. She has young children, it's going to be rough, so go show her some support, here. (And, amazingly, she's kept her sense of humor intact.)

Vermont is in bad shape, having never dreamed, landlocked and deeply northern, that a tropical storm could impact, devastate them so.

Here there are a few trees down, but the sun was shining today and all the world seemed back to business as usual. We were out and about, too. The boys and I treated ourselves to Shake Shack for dinner tonight, and the joint was hopping.

I was pissy about folks complaining, whining about the "big deal about nothing" and feeling that the city shouldn't have shut down.

"I'd rather be over-prepared than under-prepared, wouldn't you?" I asked them, reminding them that there were people who lost lives, places where it wasn't "nothing" at all. (Yeah, I was a bit of a bitch today.)

And now we're back to trying to find ways to fill these last days of summer before back-to-school-ness takes over our lives. We will be getting busy, soon.

There are still mountains of musty smelling camp laundry to be done, bags to be unpacked from all our journeys (including my BlogHer swag bag - what the hell is IN there, anyway?) And summer's curls to be shorn, and school supplies to be hunted and gathered.

We are moving on.

Goodnight, Irene, now fizzling out over the deep blue Northern sea.

Your winds whipped down our street, you rains lashed our windows; and soon you will be a story we tell... where and how we danced with Irene.


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SNSS: It’s Just Not Fair

Today's SNSS guest needs no introduction (but of course I'm going to give her one anyway). It is the lovely Shell of the blog Things I Can't Say. Yes, she of the wonderful "Pour Your Heart Out" link-up and the weekly "Blog Friend Feature." A community building blogger, if ever there was one. 

Did you realize she was a special needs parent? No? Well, she doesn't talk about it all the time, it's not the main focus of her blog, but neither does she hide it. It's there; sometimes explicit, sometimes implicit (especially if you have SN-kid-dar like I do).

Shell has three boys, and her middle child has learning, behavioral and attention disabilities due to severe lead poisoning. If this strikes fear into your heart, it should. This is a terrifying thing for her family to deal with.

Shell is a fierce momma bear, a protector and advocate for all her children. She is also a special, special person, creating community and good will throughout the bloggosphere.

But the main thing of importance here? Shell is a wonderful writer, telling it straight from the heart, as you will see: 

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It’s Just Not Fair - by Shell

All siblings fight, right? It’s normal that my boys sometimes call each other names or get physical with each other.

But sometimes I think it’s made worse by my 5 year-old, my kindergartener A’s difficulties from lead poisoning.

And other times, I think it’s made worse by me.

If A bites his 3 year-old brother, it’s often a result of M having provoked him numerous times. Because A doesn’t really start things with other kids. He is in his own little world.

We call it “1-2-3 Explode” since he tends to shrug off the first two things that someone does to him in a short period of time. But, if they keep bugging him, he’s going to explode. And it’s almost always in a worse way than what another child was doing to him.

In his mind, his brother was doing something to him so he was going to fight back. He doesn’t have that concept of “worse” actions. Like how we view a brother biting as being worse than hitting. To him, it’s all bad.

And while I cannot give him a free pass on the biting, I tend to get frustrated at M, for starting it in the first place. He knows better. Yes, even at 3, he knows better.

Or maybe A and his 6 year-old brother J will be having an argument. Names are flying. “Poopy brother” and “Butthead” are common. I remind them that we don’t talk potty talk unless we are in the bathroom.  But, then J will get really frustrated and call A “Stupid” or “Dumb.”

And I get so angry. A is NOT stupid.

But, then again,  J is not a butthead either. And yet, I didn’t get that mad at A.

Sometimes it’s the little things. It’s snack time and I let A choose his snack first because small things, like not having the snack he had his mind set on, can make him meltdown.

At dinnertime, if J or M don’t like what we are having, that’s just too bad. But if A is about to shut down because he’s hungry and he is focused on having a peanut butter and jelly, I’ll give in.

When it’s time to clean up and A sometimes squats down on the floor with his hands over his ears, I ignore him while encouraging the other two to continue to pick up their toys.

These incidents don’t happen all the time, but they are a regular part of our life. Because of the way that A can shut down, I have to decide what is worth the battle. 

Sometimes I look at what’s going on, sigh and think that’s not a hill I want to die on today.

But, I don’t give his brothers a free pass like that.  Because they don’t need it.

I wonder how much they resent their brother for it. I wonder how much they resent me for it.

Because it’s really not fair at all.

But, it’s not fair that their brother has lead poisoning, either.

It’s not fair that M can join in with A’s soccer practice better than A can. It’s not fair that J can waltz off to his classroom without needing any help and A needs help in staying focused on where he’s supposed to go.

So, yes, they are treated differently. Because they are different.

I just hope as they grow up, they can learn to love each other for those differences.

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This post is sad and moving and way too true. It is a struggle so many of us share. I know this is a painful topic for Shell, and I want to thank her for opening up her heart to "pour it out" here with us.

I can't even begin to tell you how many times Ethan wails "it's not fair" when I make him do stuff Jacob gets a total free pass on.

I have occasionally snapped "Okay, do you want to trade? Do you want to be the one with autism?" at him when I just can't stand it any more. I'm not proud of it, but it actually shuts that down pretty fast. So, yes, Shell, I can totally relate.

OK, so now that you have read Shell here, you are going to want to follow her home. So go read her at her blog Things I Can't Say. 

You may want to start with this incredibly heart rending post, where Shell talks about her son's lead poisoning, or this one about how being fair does not mean everyone always gets the same. Or, in a lighter vein, try this one about a mom-fail involving TWO self-imposed haircuts in one week.

Finally, you should follow Shell on Twitter, and go "like" her on her Facebook page, because if there is a blogger with a bigger heart than Shell? I haven't met her.

And once again, Shell, thank you from the bottom of MY heart. You have truly touched me with your post this week.


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Five Months of Special Needs Sibling Saturdays

Today, I have no guest. Due to the craziness of our lives as special needs parents, I developed a hole in the SNSS guest post schedule. When this has happened before, (and it has) I was able to shuffle the schedule around or beg a speedy post from a kind and accommodating blogger.

But this week, I just couldn't do the hustle and scramble involved in that. Between being deep in summertime kid-ville and swamped by the job of getting the kids packed to go off to (first time!) sleep-away camp for a week tomorrow, I am slammed.

I decided this was the perfect opportunity for a look backwards, a chance to call attention to some wonderful earlier posts that some of you may have missed.

(Hey if every TV show on the planet can do a "clip-reel" episode and recycle their old shows, why not SNSS?)

So, this series has been running for five months now, and there have been twenty one Special Needs Sibling Saturday Guest Posts, plus my introduction to the series, Coming Soon: Special Needs Sibling Saturdays.

These are amazing, awesome posts here, and I am honored to have hosted them all.  Some will make you laugh and some will make you cry. But all will touch you.

Come read, and if you've already read them all, come reread the ones that really spoke to you. We'll be back with a new post next week (and from the amazing Shell of Things I Can't Say). Until then? Read and enjoy.

I thought it might be useful to lay them out by category, to help folks find posts that might be specifically of interest to them. (Note: some posts may be listed more than once if they belong in multiple categories.)

The Special Needs Sibling Saturdays Guest Posts, so far:

The (Awesome) Autism Moms:  
My Brother, My Brother 
     by Alysia Butler of Try Defying Gravity
Cat Dancing 
     by Jillsmo of Yeah. Good Times.
When It's More Than Sibling Rivalry 
     by Jen Troester of Living Life, with a Side of Autism
Our Social Skills Group is 24/7
       by Jean Winegardner (a.k.a. Stimey) of Stimeyland  
Brotherly Love with a Side of Autism 
     by Jean Myles of Mommy to Two Boys  
Our Shopping Cart
       by Jessica of four plus an angel
Sibling Saplings
     by Spectrummy Mummy of Spectrummy Mummy  
Sisters
      by Jess of a diary of a mom 
Brothers and Sisters: The Next Generation 
     by Jennie B. of Anybody Want a Peanut?  
Special to the Fourth Power 
     by stark. raving. mad. mommy of stark. raving. mad. mommy
Siblings – The Best Therapy
   by Julie Cole of The Baby Machine  
Happy to Be in the Middle 
     by Jen of The King and Eye  
A Family Mosaic 
     by Mama Apples of Apples and Autobots  
Unusual is not the word!
     by Blue Sky of Looking for Blue Sky
When a Brother's Love Hurts 
     by Gina of Special Happens  

The Dads:  
Siblings and the LD Person
       by Peter Flom of I am learning disabled
Sister Knows Best
      by Big Daddy of Big Daddy Autism  

The Siblings:  
Siblings and the LD Person
       by Peter Flom of I am learning disabled
I am the Sister 
     by ababynanny of Hand in Hand in Lala Land  

Kids with Psychiatric Disorders:
Driving In the Wrong Direction
     by Adrienne Jones of No Points for Style 
Special Needs Squared
    by Julia Roberts of Kidneys and Eyes  

Kids with Epilepsy / Seizure Disorders:
Hilarity and the Mermaid’s Brothers 
     by Elizabeth Aquino of a moon, worn as if it had been a shell  

Kids with Genetic Disorders:
Special Needs Squared
   by Julia Roberts of Kidneys and Eyes  

Kids with Cerebral Palsy:  
Unusual is not the word!
   by Blue Sky of Looking for Blue Sky  

Complicated kids with multiple diagnoses:
Driving In the Wrong Direction
   by Adrienne Jones of No Points for Style  
 Special Needs Squared
   by Julia Roberts of Kidneys and Eyes  
When a Brother's Love Hurts 
     by Gina of Special Happens  

Very complex families - multiple kids with Special Needs:
Special to the Fourth Power 
     by stark. raving. mad. mommy of stark. raving. mad. mommy  
Special Needs Squared
     by Julia Roberts of Kidneys and Eyes  
A Family Mosaic     
    by Mama Apples of Apples and Autobots  
Unusual is not the word!
   by Blue Sky of Looking for Blue Sky
 

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Superheroes all.

And also?

Ordinary mothers, fathers, sisters, brothers; telling their stories, sharing their lives.

Thank you.



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SNSS: When a Brother's Love Hurts

Today's SNSS guest is the lovely Gina St. Aubin of Special Happens. If anyone would know that it does? It is Gina. She has a busy family with three children, with her eldest, J being multiply challenged. 

I mean multiply: Cerebral Palsy, Autism, Sensory Processing Disorder, and, most devastatingly, Landau-Kleffner Syndrome (LKS), a rare epileptic disorder. As part of this last, J experiences a severe sleep disturbance in that he does. not. sleep. Hardly ever.

And then Gina has a three year old son and a four year old daughter to care for as well. (Are you getting tired just reading this? I am.)

All this, and Gina still finds the time, energy and fortitude to be an advocate for special needs children, parents and families. She champions our children. She is inspiring to read.

And yet, she also has her struggles, her soul's midnights. And that is where she has come from to write this post she shares with us today.

Some SNSS posts are heartwarming and light, celebrating brotherly or sisterly love. This is not one of them. This one is about that stuff that hits the fan. 

It breaks my heart to read, and also I nod, knowingly, understanding because, well, I do.

So come, read the story Gina has brought, here:   

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When a Brother's Love Hurts - by Gina St. Aubin

“Mommy! J is hitting meeeeee!” B pleads.

“Mooom, J bite me!” B says angrily.

“STOP J!”  enforces B as strongly as he can before J goes back for more.

“MOM! J won’t stop hitting me. He kick me.  MOOOOOOOOOOOOM!”....

I watch B and worry, heart aching for all that he’s enduring, the likelihood of just how this is shaping him…

He is caring, sharing, kind, funny and gentle, yet can be rough and tumble.  He loves who he loves, will follow in your lead but stand firm when you’re turning down a path he is adamant not to trend.  Strong, brave, lighthearted... breakable.

This three year old endures the strikes. The torments. The kicks, pulls, pushes, strains, bites. Slaps upon the head. All he absorbs, he does so with tears.

Cries for help. Pleas for someone to make it all stop; though there are times I come to find that he’s enduring without the tears. Silently turning to huddle inward, protecting what he can until the tormentor moves on….

He just wants to play with his brother. His brother, 8, has Autism. His brother who is his tormentor... and his playmate; the boy he looks up to, enjoys, loves so fully.

He seems to hold onto the times they have fun, laughing and squealing like the best of friends. Play for chunks of time where no injuries are received, where no pain is felt, and only the laughter of childhood friends fill the room.

I love these times. They remind me that J is ‘normal’ in many ways. He still wants to have some of the many interactions that a NT child wants. He still is a sibling, still has sibling rivalry.

These times also remind me also that his siblings see him for who he is rather than a person ravaged daily with epilepsy along with climbing the daily mountains of autism and more.  These times are the times I see our family as it would be if things weren’t as they are.  Yet still I measure the actions, the sounds, the level of laughter or energy, or excitement.  Because of... well... the OTHER times...

The first I thing I should tell you is that these aren’t ‘beatings’ (don’t call a caseworker, no serious injuries have ever been received), they ARE NOT extremely forceful exhibits of hostility so much as excitement drawn out in less-than-soft swings filled with a lack of impulse control.

But, it is my three year old getting hurt by my 8 year old. It is my NT child being hurt by my severely NOT NT child.  It is tearing me up inside just as much as it’s impressing upon him.

I’m torn with duties, with raising and guiding my kids to be independent, strong, self-confident beings able to run and wreak havoc on the world.  I can’t watch the kids every second of the day, without decidedly never making them a meal.

Going to the bathroom, folding laundry or even picking up a toy in the next room simply leaves too much time for altercations to occur, yet I still want to foster a good sibling relationship. I try to allow room for them to work things out and negotiate with one another, becoming the people they will become in the future, with experiences and understanding of relationships under their belt... while keeping them safe.  That’s my primary duty... keeping them safe.

So, I worry about him... my B.  My three year old with a heart of gold. He loves his brother with more love than I knew a sibling’s heart could hold - but, is he learning to succumb to the abuses of others?

Will he become a victim? Am I teaching him to stand up for himself by coming to his rescue and then giving him the words and actions to keep himself safe?  Will he be strong?  Will they keep their relationship of loving brothers? Will his innocence be smashed?

Am I keeping him safe?

I’m trying... I come to the rescue. I come running, often. I hurt often, hearing his cries.  I wonder... how much is J’s hurting him... hurting him!?!?

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This is a brave, brave post for Gina to write. It is so hard to talk about the things we don't have answers for, only questions upon questions.

It's hard and brave to write about fears, about those bone-chilling places where we worry that our best just isn't good enough, and harm is coming to our children. Mostly we slap rosy paint over this stuff, or try to hide it away in our brain's back closet.
 
So I applaud you, Gina for voicing the secret thoughts so many of us have and are afraid to speak of, for fear of being judged, by our own selves and others. Thank you. Truly, thank you.

And now that you have read Gina here, please follow her home to her blog, Special Happens, where she is creating a wonderful space for connection and communication about special needs parenting. 

Start with this post, about what autism means to her, and then maybe this one, and this one, about being the parent of a special needs child. Or, for a lighter moment, this one about how a snow day began, last winter.   

Besides writing on her own blog, Gina is a regular contributor at the 5 Minutes for Special Needs site, among others. Finally, you should follow Gina on Twitter, and go "like" her on her Facebook page, joining her awesome community.

And once again, thank you so much, Gina, for your candor and honesty. I am honored to host your words here today.


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SNSS: Unusual is not the word!

Today I have another Irish Mum here as my SNSS guest: Blue Sky of  Looking for Blue Sky. She has a complicated family with three children and an ex-husband.

Of her three children, the eldest daughter, Angel, is a lovely typical teenage girl; her younger sister, Smiley, has cerebral palsy and is non-verbal; and the youngest, Aspie Boy is, obviously, on the autism spectrum. Like I said. Complicated. 

Some days the intersection of one child's physical needs and another's emotional needs (or meltdowns) make life nearly untenable. But somehow Blue Sky finds a way through. Because, well, this is her family. 

She is a wonderful, gifted writer, and I have been reading her regularly since nearly the beginning of my sojourn through the SN blogging world. Furthermore, she helps out with the social media side of Irish Autism Action, aiding Jen, who was my other Irish guest from a few weeks past.

So come now, sit with me and listen to Blue Sky weave the tale of her family so beautifully, here:

Unusual is not the word! - by Blue Sky

It all began with a little girl called Angel. Adored by her Mum and Dad, she happily stayed with her childminder during the working day and then played out with her friends on the long summer evenings and stayed in playing board games in front of the fire when the nights closed in. She came everywhere with us and just seemed to enjoy our company.

It was an idyllic start to her childhood and almost everything I could have wished for.  But I wanted her to have brothers and sisters, and so I had two more children at four year intervals. And that's where life got in the way of my plans.

Into Angel's happy shiny world were thrown not one but two children with special needs. Smiley came first, and she was born at 27 weeks. She has cerebral palsy and some other undiagnosed disorder. My handsome boy had a perfect start in life but was diagnosed with aspergers at age 8, soon after my marriage broke down.

As Angel says, she can stop a conversation about families stone dead when she explains about hers! So how to describe the unusual dynamics between the siblings in this family? Well I'm going to be very logical and explain them one at a time...

Angel and Smiley
It was a huge shock to our little family when my waters went at 24 weeks on my second pregnancy. Smiley was born two weeks later and our lives changed completely. It soon became clear that this little girl was heading for a bumpy ride in life. She was in and out of various hospitals for her first two years, but Angel never complained.

Right from the start she took a huge interest in her very little sister and was a regular visitor to NICU. She talked to her, sang to her and even waved her magic wand over the incubator to make her better. If she was disappointed in having a baby sister who could not crawl or sit or toddle or talk, she never said, nor has she ever given up hope that Smiley will achieve some of those milestones one day.

As soon as she learned to smile my special little girl realised that this was her trump card. With her infectious giggle and innocent wide-eyed smile she makes everyone love her: and the more attention you give her, the more love she gives back.

Angel chats to her and plays with her every day, and Smiley's face lights up as soon as she sees her enter the room. But it can't be always easy. I know that Angel worries about her sister's future and who will take of her when I am no longer able. And I'm sure she gets frustrated with the amount of time it takes to do anything or go anywhere, but she never blames her sister.

Smiley doesn't complain without good reason, she loves attention but will only demand it when she needs something - like a drink, a trip to the toilet or a change of DVD. Despite all its limitations Smiley is so happy with her life and that inspires almost everyone who knows her, including her sister.

And yet. Angel wanted a sibling that she could do all the normal stuff with, so when I asked her if she would like another little brother or sister even if it meant she had to give me a lot of help, there was no hesitation and no happier child when my baby boy was born and he obviously had none of Smiley's problems.

Angel and Aspie Boy
As a baby he was perfect and so so cute, but also demanding and cranky and odd...he couldn't seem to control his body properly, he had unusual interests and was very late to talk.

I was worried, but most people just thought he was 'being a boy', and oh she loved feeding him and playing with him and watching him.

But as he got older his behaviour got more and more difficult. He got so angry and upset when things did not go his way, we would all end up in tears. Once he was diagnosed with aspergers at least we knew why, but not what to do...on good days they still get on well and laugh and joke and gang up on me by chatting in Irish. They still do things together - cycling, watching DVDs, popping out to the shop for messages.

But none of this happens on the bad days, and there are too many of those.

Aspie Boy and Smiley
In my naivety I assumed that my new baby boy would just accept his older sisters. They were already part of his family, so why wouldn't he? Well I was completely wrong. As a small child he did play with Smiley, but was also clearly jealous of all the time and attention that she needed. As he grew older and started to understand he limitations he began to be fearful of her.

Now he largely ignores her.  Once in a while he will find a toy that he thinks she may like and give it to her.  Carefully.  You see he still believes that he can catch cerebral palsy and is obsessed with not touching her or anything she may have handled.  Meltdowns can be triggered if she sneezes anywhere near him.  This can be difficult to avoid as they sit next to each other in the car.  And in the car he can't escape from her.

She may not be able to get out of her seat but she causes problems in other ways.  As she has got older she has got louder.  She is always happy and always smiles and laughs.  But now she screams with delight and for a boy with sensory issues this is almost unbearable. 

We have sound-blocking headphones for him but its not always enough.  So another reason why we spend so much time at home.  Luckily home is now large enough to position the children at almost opposite ends of the house, so the only time they really get close at home is at meal times and I face her away from him....

Angel
The one promise I made to myself was that Angel should never feel that all the effort was being made for Smiley... and then later for Aspie Boy.  She had to see her parents making superhuman efforts for her as well.

So I was delighted when she started gymnastics and needed lifts and leotards and a trampoline and help getting to competitions....it took up time, and meant dragging the kids out in their pyjamas some nights to collect her, but to me that was important. She did other sports as well, but the gym became her second home and the gymnasts her other family.

My job in PR also helped to make her feel special, because while we didn't go on foreign holidays and other stuff that families take for granted, I was able to provide experiences and freebies that were the envy of her friends and sometimes they got to take part in photoshoots or meet celebrities, so it helped to even the scales. In return she has been a second 'parent', a playful big sister, a pram pusher, a carer and a cleaner, as well as the best daughter any mother could hope for.

Putting them all together...
As a group the biggest problem I have with my children is their different interests. Angel is sporty, the other two are not.  Aspie Boy wants to stay in the house, Smiley wants to go shopping. Many activities worked well though when the children were younger: when Smiley was more portable and Aspie Boy more amenable.

We used to be able to go to the beach for a couple of hours before Smiley got bored, and when she was very little I'd dip her in the sea...thought she tended to turn bluey-purple very quickly! Aspie Boy has only been to the beach once in the past 18 months and insists that he will only go with a friend. But guess what?  Most of his new friends have aspergers and do very little except play video games.

Luckily Angel is now grown up and can look after herself and do her own thing as well as providing a bit of babysitting, so that I can take the other two out separately. Their Dad also does some activities with Aspie Boy when he sees him.

So yes we're an unusual family and life can be interesting at times for all of us including Angel. She's gone along with almost everything with good grace, except for the meltdowns.  They upset us all.

If we could just find a way to stop them then family life would be pretty good...

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Blue Sky has painted such a vivid portrait of her special, unique family here, I feel that I know them personally. I love how her love and concern for all of her very different children shines through in every word she writes.

Aspie Boy is currently going through a very difficult time, with nascent adolescence setting off a string of meltdowns that are becoming increasingly hard for Blue Sky to manage. My heart goes out to her, as she copes with the pain both and practical issues issues of this unfortunate development.

So follow her home to her blog, Looking for Blue Sky, and read more about her family and offer her your support. You will want to read this poignant post about wishing Smiley would speak, and this intense post about one of her son's first meltdowns.

Also read this short but devastating post about Blue Sky's wanting her old, sweet son back.

Finally, you should follow Blue Sky on Twitter, and go "like" her on her Facebook page.

Thank you so much, Blue Sky, for writing so beautifully about your family and bringing us into your world. It is my pleasure and honor to call you my bloggy friend.


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