SNSS: Amazing Sister to Grace

My guest today, Frelle of the blog Made More Beautiful is a very, very special person. She has just come through a very hard time, including a separation from her husband and impending divorce.  

But in spite of the difficulties on this path through her life, Frelle is always reaching out to help others. She is a part of many online communities. 

I first "met" Frelle through some lovely supportive comments she left on my posts. I followed her home to her blog and discovered that not only was she a good online friend, she was also a wonderful writer, honest and deep.

Frelle is the mother of four children, the oldest of whom is a daughter with challenges that fall on the autism spectrum. Today she shares the story of the strong relationship between her eldest daughter and her just younger sister, who is like an older sister now.

Read her beautiful words, here:

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Amazing Sister to Grace - by Frelle

My oldest daughter, Grace, is almost 12.  She was diagnosed with Aspergers about 3 years ago. She has three younger, neurotypical siblings.  Two sisters, Lily (9) and Felicity (6), and one brother, Jackson (4). I keep them anonymous on my blog as Oldest Sister, Middle Sister, Smallish Girl, and Little Fella.

The journey toward diagnosing Grace didn't start until she was about 5. I had no idea that Grace wasn't developing typically until Lily came along three years later and had excellent hand eye coordination and motor planning skills that her older sister had a lot of trouble with.

Because of the 3 year age difference, I decided to have Grace evaluated, and she scored a 36 month delay in both gross and fine motor skills, and was diagnosed with Sensory Processing Disorder, Sensory Modulation Dysfunction, Auditory Processing Disorder, and Dyspraxia.

At age 6, she possessed the emotional maturity of a preschooler, and would often get overstimulated in public and have meltdowns.  The laying-in-the-aisle screaming and crying variety. Her siblings never made scenes like she did, and more than once I heard the words "brat" "can't control her child" and "isn't she a little old to be throwing a toddler fit?" By age 8 she had mostly grown out of public meltdowns, but Lily began to be embarrassed at the loud wailing and yelling her sister would do in the car or in front of Lily's friends.

I told Grace about her diagnosis at age 9. She had been having an incredibly rough day, and had been hitting the door in the van and crying and screaming all the way home.  She went to her room to calm down, and when we spoke later, she asked why she was so different from other people. So I told her I thought she inherited her blue eyes from her grandma, her freckles from me, and the way her brain works from her dad. A variation of normal.

Lily is the sibling closest to Grace in age in our family. I told Lily about her sister's diagnosis when she was in second grade.  Grace was still having meltdowns often, but I never sent her to her room to get control of herself.  I knew she needed to be talked through the panic attack/meltdown.  On the other hand, when Lily was being loud and obnoxious and having a tantrum, I would send her to her room and expect her to pull herself together and come out when she could be nice to people.

She thought this was really unfair, and confronted me about it one day after Grace had caused a particularly disastrous meltdown scene during her birthday party. I explained in very general terms that Grace can't talk herself down out of a fit very well, and that she could easily pull her own self together. I explained that Grace's food and clothing and loud noise sensitivities were all tied together, and that her brain thinks a different way than hers and mine do.

Lily passed her sister in emotional maturity last year. I wasn't sure how Grace and Lily's relationship would change when Lily did this. I'm not sure either of them realize it happened, and there's no resentment from either of them toward the other.

Lily continues to relate to the world in a much more mature way than Grace.  She has taken on the role of the oldest probably because she sees that it needs to happen, as well as it just being because of her particular personality.

Lily, at 9, is a very typical tween. She's very into popular music and tv shows, she loves to go shopping and is very into fashion, she enjoys going out for coffee with me, and helps her siblings with shoes, clothes, bathtime, getting snacks or sippy cups, and is attuned to needing to jump in and help when both of my hands are busy or I haven't noticed an issue in another room.

In contrast, Grace has few tween characteristics, preferring to draw, read, play webkinz online or Barbies with her youngest sister, Felicity. Outside the house, Grace behaves much like a typical tween, and does well at blending in with other students.

She is protective of her diagnosis, but when she makes a new friend and learns she can trust them, or that they have a sibling with special needs, especially autism, she confides what makes her unique. She's never had it used against her, and she has a circle of close knit, very protective and mothering friends that she counts on to help keep her centered throughout her day.

She has a difficult time not losing control at home these days, partially due to the necessity to act older than she feels and blend in and deal with sensory issues very quietly all day long, and partially because her father and I have separated and are divorcing.

Felicity and Jackson, Grace's youngest siblings, have never questioned why she acts differently. They have never spoken up accusing her of getting special treatment, or complained very much about how she throws fits more than all of the rest of them combined.

Recently, Grace was being cyberbullied by a girl at her middle school. This girl had started trouble between Grace and her friends in elementary school as well. I overheard Grace telling Lily what was going on and reading her the emails that the bully had sent.

Lily listened patiently, told her she was sorry that the girl had said mean things to her and about her to her friends, and that it wasn't right. She gave her advice on how she would handle the situation. Then she said something I think a lot of older siblings tell younger siblings: "I can pick on you, but NO ONE ELSE can!"

I appreciate that Lily doesn't make fun of Grace in a cruel way or use her diagnosis or hypersensitivity features to put her down. She seems attuned to that without ever having been told to avoid it. Lily also has a general appreciation for those with special needs and invisible disabilities because of the openness in conversation about them in my house.

Grace and Lily have recently started confiding in one another due to the separation and divorce their father and I are going through. I can't tell you how it warms my heart to see them develop a closer emotional bond.

A few years ago I never would have believed they would make good friends, let alone feel any loyalty to one another. Being a special needs sibling can be challenging, but Lily has naturally and without instruction, become a wonderful "big sister" and I'm proud of the young woman she is becoming.

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I love everything about this post. And the supportive relationship between the sisters truly moves me to tears. 

Now that you have read Frelle here, please do follow her home to her blog Made More Beautiful and read her beautiful heartfelt words there, too.

You may want to start here, with this post about a big step Grace took one day, or this one, about Rigid Thinking, Expectations, and Public Meltdowns, or another post about Grace's Meltdowns and Real Life Coping Skills.

Do read this important post, Happy Half Birthday, You Have Aspergers about what it was like to talk to Grace about her diagnosis. 

And if you want to know more about Frelle herself and her difficulties, read this post where she talks about striving to feel like she is enough. 

Finally, go follow her on Twitter where she tweets as @frelle.

Thank you so much Frelle for sharing your lovely family with us here today.  


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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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SNSS: Sunshine

I found today's SNSS guest, Jim W, when he was guesting over at another blog, Yeah. Good Times. by Jillsmo who herself was an early SNSS contributor with a lovely post about her sons. 

I liked his voice. I wondered, "More kids? SNSS potential?" and followed him home to his blog, Just a Lil' Blog where I found out that, yes, Lily has an older sister. Yay!

In fact, the blog's tag line? Explains it all: "The true life adventures of a little girl with autism, and her struggles raising her two parents with only a big sister to help her."

Jim is smart and funny and wonderful to read. I am so glad he is now on my radar.

And now? This beautiful tale of sisterly love -- and be sure to watch the short video at the end!

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Sunshine - by Jim W

“What do you miss most about your sister, Emma?” I asked her while we drove to Wisconsin.

“Making her laugh, and when she smiles,” she replied sadly.

“What do you miss least?” I wasn’t sure I wanted to ask that question, it felt like a weird sort of betrayal, but I wondered what she’d say and she didn’t miss a beat.

“Getting spit on.”

When Lily was born, in a concerted effort to short-circuit any perceived monopoly on attention that she might be hijacking from her hitherto only-child sister, we bought a fluffy white teddy bear and gave it to Emma from Lily.

We said, “This is from Lily” and we read the card aloud, “Thanks for being a great big sister to me, Love Lily.”  Emma at three didn’t question Lily’s precognition of her future bigsistermanship. 

We’re blessed in many ways with the kids’ relationship. Lily, though not particularly affectionate in general, genuinely cares for and about her big sister, asking for her when she’s not around and hovering over her clumsily, touching her face or asking for “skishes” - what Lily calls it when Emma lays down on top of her and says “I’m going to squish you!” and Lily giggles and says “I want more skish!"  And Emma has been the best big sister we could possibly have hoped for; patient, understanding, loving, and playful.

We had decided to attend the wedding of my wife’s sister in Wisconsin without Lily.  Our reasons, filtered through guilty consciences ring hollowly even now in hindsight, but they were valid then, and the details that unfolded over the course of the trip only served to confirm them:  Long trip confined to the car, cold weather in an unheated church, loud music and crowded dance floor at the reception, upstairs bedroom, gas fireplace, then a long drive home. Throughout the event we had several “ah hah!” moments where we looked at each other and communed wordless agreement, “she could not have handled this.”

It was the first time we’d really separated the two kids for any significant length of time.  There’s always the tool of divide-and-conquer that married parents of two busy kids are forced to utilize at some point, so my autistic five year old daughter, Lily, and her neurotypical nine year old big sister, Emma, are away from each other often, but in the same ways that any siblings born three years apart are; for brief stretches of therapy, or dance practice, or softball games, always back together again just in time for bed.

My parents took care of Lily while we were away.  She loves them and always has fun playing with them, and that was our primary argument to Emma whenever she would get sad about the upcoming separation, “But you know Lily is going to have so much fun with Gramma and Papa!”

“Yeah, I know.  I just don’t want to be away from Lily.”

In the days before we left I had tried to record a video of Lily saying “I love you, Emma!”  I figured if it was happy enough, it’d bring a little joy to a big sister who I knew was going to miss her little sister.  I pushed “record” and asked Lily to repeat the phrase.  Sometimes that goes like this:

“Say, ‘I love you, Emma!’” I’d say.

“Say I wuv you Emma”, she’d reply, echoing the request.

As I pressed “record” this time and asked her to tell her sister she loved her, she just kept repeating, “Where is Emma?  I want Emma.” And no amount of prompting could convince her to go “off message.” 

I imagined myself playing this video for Emma while we were on vacation, with Emma asking for her sister, and me trying to reassure her that Lily was fine using a video of Lily repeating over and over “Where are you Emma??  I want Emma!”  It didn’t seem like a great idea.  I scrapped that project and instead tried to get her to sing “You Are My Sunshine” with what I hoped would be a “congratulations” to the happy couple as the grand finale with mixed success.

As we dropped Lily off for school the day of our departure none of us handled it well, but Emma had the hardest time.  Occasionally over the course of the days leading up to our trip there had been tears, and this day was no exception.  We walked away from the school, leaving Lily crying with her school aide, and I picked Emma up, hugged her tightly as she sobbed softly against me, and tried to stay composed.

“I miss Lily,” she said, her words muffled by my shoulder, and we hadn’t yet even gotten in the car to drive away from the school.

“I miss her too, baby.”

Let me return to the subject of Sibling Saturday with a rewrite of the trite but true, “If you’ve met one child with autism, you’ve met one child with autism:  “If you’ve met one set of siblings affected by autism, you’ve met one set of siblings affected by autism”.  Not as catchy, to be sure, but just as true.

My daughters love each other and are good with each other in ways both unique to Lily’s autism, but also the same as any other loving neurotypical sisterhood.  They irritate each other and get in each other’s way, they fight for TV time, but at the end of the day they miss each other and want each other around all the time.

I know from reading other accounts of siblings’ relationships with each other that I can’t extrapolate any generalized wisdom regarding typical sisters and their autistic siblings, anymore than typical siblings relationships can be generalized to rules of thumb for other typical siblings.

Five years later the teddy bear that Lily gave Emma on the day she was born was with her throughout our wedding trip.  She left it briefly in her grandparents’ room one evening, and cried when she couldn’t get it back, saying, “It’s the only thing I have from Lily!” until we called and left messages for her grandparents pleading with them to call us and we’d pick up the bear.

They did, and we did, mollifying Emma.  She had a favor from Lily, almost like the knights of old, carrying something to remember her loved one by, tilting not against her fellow knights, but her own loneliness. 

And that made her the smart one.  I could have used a favor too.

In a way I found I had one. We all did. The resultant video of Lily singing “You Are My Sunshine” was something my daughter (and my wife and I) watched over and over and over during the trip as the bustle of the pre/post wedding details would lapse into brief leisure and our brains and hearts returned again to the missing member of our family.

Lily was asleep when we finally arrived home at the end of the trip.  My parents put her to bed at our house that night and waited for us. After they left, we all went upstairs to Lily’s room, creeping into it and standing over her happily.

Emma kissed her finger tips and intoned “I love you Lily” quietly over them, like an incantation, smoothing her fingers through Lily’s hair as she slept undisturbed.

It’s good to be together again.

 

"You Are My Sunshine"

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I really don't know what I can possibly say to cap this beautiful, beautiful post about a pair of loving sisters, about this lovely loving family.  Anyone who knows the contentious nature of my sons' relationship will know how moved by and deeply envious I am of the depth of these sisters love and care for each other. 

This line really kills me: "I just don’t want to be away from Lily." because Ethan begs daily to have Jacob sent away. Sigh. 

And now that you've gotten to know these girls a little bit here, please follow Jim back home to Just a Lil' Blog to read more. Even though Jim's only been blogging for a short while, there are many gems there.

Try starting here, with this post about the girls' relationship, or this one, about appreciating the small moments.  Try this one: Wedding Trip Decisions going into more detail about the thought process behind this trip.

Finally, do not miss this thoughtful post about things that have inspired Jim to become a more involved parent and to write about parenting autism.

You're also going to want to follow Jim on Twitter, where he is known as @blogginglily and where his current avatar is the wonderfully vikinged up:

I'm sure he's going to change this soon, and thought you should see it!

Thank you so much Jim for sharing your beautiful family with us here today.


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SNSS: Dynamic Family Dynamics

Today's SNSS guest, Kate Coveny Hood blogs at The Big Piece of Cake. And I love going to read her there (even though I get hungry for pastry every time I do) because she is both a lovely writer and a positive force in the universe.

Kate writes about all about her adventures raising a family - 6 and a half year-old Oliver and his 5 year-old boy/girl twin siblings George and Eleanor. Oliver is the "special" child in the family, on the autism spectrum with a PDD-NOS diagnosis. In her blog Kate is smart and funny and reflective in a way that I just love.

While Kate writes about her son Oliver and his issues, her blog doesn't focus on special needs. Rather, it focuses on "family" and sometimes just on "Kate" the PERSON. (Imagine that!)

In fact, it wasn't until I asked Kate to write a guest post for this series that she sat down to actively think about what it means to the twins to have a brother who is different. And here are the results...

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Dynamic Family Dynamics - by Kate Coveney Hood

Often when asked about the level of chaos and drama in my house, I'll say that "I have a special needs child, an explosive child and a girl." That pretty much sums it up.

But let me backtrack a bit.

I have three children - Oliver, my six year old, and George and Eleanor, my five year old twins. And just in case you're wondering - no, that age difference was not planned. Nor was the two-for-one pregnancy. But no matter how dramatic and chaotic it may be, I never lose sight of how lucky I am to have these three entirely unique people in my life - to be able to watch them grow.

Like any other parent, I once looked into my children's newborn faces and dreamed about their futures. I imagined them as happy and healthy kids. So close in age, they would be friends. They would grow up together and then go on to attend college, find careers... have families.

I always knew that they were really just on loan to me. I would raise them, but they would eventually leave to find their own way in the world. And I looked forward to watching it all unfold.

We had some basic expectations for the roles they would play, of course. Oliver would be the big brother, and look out for his not-that-much younger siblings. Eleanor would be a daddy's girl because they all are in my husband's extended family. George would be the middle child - even though he is only a minute older than his sister - and as a loud and demanding infant, he seemed destined to be a handful.

And some of this ended up being true. Eleanor is a shameless daddy's girl and George has taken the term "handful" to a whole new level. But Oliver is not your average, everyday big brother. He is my special needs child.

The twins were born when he was 18 months old. And around that time, it was becoming obvious that he was different from other toddlers. His speech wasn't developing with the lightning speed that I witnessed in other kids. He wasn't as social and trusting. He was more interested in throwing blocks in than he was in using them to build towers.

Years later, after special needs preschool and various therapies, Oliver is sweet, handsome boy with severe sensory processing disorders. He also has an Autism Spectrum label: PDD-NOS (pervasive developmental disorder - not otherwise specified).

The behaviors and challenges that qualify him for a Spectrum label are primarily noticeable in his communication and language skills, but he also has some more subtle problems with motor skills. We've been lucky to find a couple of alternative therapies that have been nothing short of magic as far as I'm concerned. And Oliver is always making progress - moving forward. But it's never fast enough for him to catch up to, let alone keep up with, his peers.

And it's not just other kids his age anymore. Oliver is now officially behind the skill levels of his siblings. Over time, George and Eleanor have become my barometer for what Oliver will hopefully learn how to do.

People are confused by our oldest son because he "looks normal." But they haven't witnessed Oliver's daily struggles with things that have come so naturally to his brother and sister. Like sustaining conversation, understanding the rules in games and making friends. They don't understand why it's George who plays light sabers with the older boys across the street while Oliver plays with Thomas trains in the dirt. It should be the other way around, right?

They also have no idea how incredibly painful this is to watch.

For all of my love for them as individuals - all of my gratitude for their health and happiness - it breaks my heart to see my oldest fade into the background while his younger brother and sister become such stars. To see the babies of the family take over so many of the older sibling roles that should have been Oliver's, by right.

And I know that sounds petty and unfair - to expect that the oldest would automatically be the front man for the band...the leader of the pack. But that's the typical family dynamic, right? And didn't I expect to have a "typical" family? Didn't we all?

So my husband and I have had to put aside some of our new parent dreams and expectations for our children - our family. It was hard. And sometimes I still feel a little sad. I worry.

I worry about the near future when the twins start asking questions about why they can do things that their big brother can't. So far, they haven't. They don't compare our family to others. It seems normal to them that George is the one who complains about Oliver messing up his...whatever it is he's doing (remember - George is my explosive child, and there's always a crisis). Or for Eleanor to act as spokesperson for her big brother when people ask him questions he's not yet developmentally capable of answering.

But as we become less insular and spend more time with the rest of the world at large, it's inevitable that my two younger children will wonder why we're different from other families.

To be perfectly honest, I've avoided thinking about this for a long time. On some level, I've been wishing that Oliver would just become "normal enough." That therapies and IEP reports aside, the kids in our neighborhood - and George and Eleanor - would see him as just another kid. Maybe a little goofy or quirky sometimes - but not so much that he couldn't fly under the radar.

Then maybe someday when Oliver would be capable of engaging in a complex discussion, we could all talk about his personal challenges. Together as a family - with Oliver participating in this conversation about him.

It shouldn't matter, I know. But I just really hate the idea of talking about Oliver to his siblings before I can talk to HIM about everything. I would feel like a betrayal. Like it was now me denying him his right to be the older brother.

I may have to do that someday - but I'm not ready. Not yet.

In a way - these ideas are entirely new for our family. We haven't had to think about them.

So I don't have personal stories to tell about how our children work around the special needs that make Oliver different from other six year olds. As of yet, the twins don't really recognize that Oliver is different. He's just Oliver. And I'm selfishly holding on to that as long as possible with no plan for the future.

Until now, I guess. Until I began writing this and reading about the experiences of other families with "special needs siblings."

I've written numerous posts about Oliver's special needs on my own blog, but this is the first time that I've actually addressed the issue of how those special needs affect his relationships with his siblings. And because I've always taken the Scarlett O'Hara approach of dealing with what I have to today, and leaving the rest for tomorrow - I'm now in uncharted waters.

I love the idea of Oliver being the big brother an taking care of his little brother and sister. But for now, and possibly for a long time (possibly forever) that's not going to be our reality. In a couple of years it may be the younger brother and sister standing between Oliver and bullies on the playground. It's still too soon to tell - but not so far off that I can't imagine that possible future.

Will they stand up for Oliver? I think Eleanor would. As a girl, she has an innate maternal side. She seeks to nurture in a way that her brothers just don't. But George? I don't know about George.

He is so full of enthusiasm for life, that he doesn't always notice other people as he races to grab the brass ring. He means well - but he's a scrapper. He may unwittingly trample Oliver in his efforts to follow the older boys with their war games and skateboard ramps. I just don't know.

But I do know that this is going to be painful at times... and I would be lying if I said I wasn't terrified by the uncertain future. That I didn't wonder how many more of my dreams that future will will steal from me.

But I find great comfort in the fact that some of my dreams are already coming true. My children are happy and healthy. They are friends. They are growing up together. They may or may not all go to college, but each one of them can find a purpose in life - something they can consider their career.

Probably the most important dream I have for them is family. The families I once imagined for them included marriage and children. And right now I have no reason to doubt that this is possible for them. For all of them.

My dream of them all having their own families might actually come true. And it might not. But it doesn't matter because whether they get married or not - have children or not - they will always have each other.

They will always be a family.

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I love how much Kate appreciates and values her son's differences, how she hold the bar high in her expectations for his, and all her childrens' future. Also I love (and am a tad envious of) how much her family functions as a coherent unit, caring about and for each other, enjoying each others company and celebrating their uniqueness. Love.

And now that you have read and fallen in love with Kate too, please follow her home to her blog The Big Piece of Cake. where her tag line reads: "Never settle for a small one, and demand a corner piece with a flower" which I think sums up her wonderful attitude towards life.

Want to get to know her kids better? Start with this loving and funny post about Oliver's lack of love for pants. Then go on to read more loveliness about George and Eleanor.  

Want more? Try this one about her kids' antics, or this one about... pretty much the same, and why they had to lock room doors when they were younger.  Also read this beautiful post about trying to integrate Oliver into an activity with typical kids.

And? If you really want funny? Read this post about her twins birth-day, which includes her water breaking suddenly - WITH sound effects - in a fancy hair salon.

Thank you so much, Kate for sharing your wonderful, very special - and DYNAMIC - family with us here today.


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SNSS: Snapshot of Our Life

I am sorry to say, I don't have a SNSS guest for you here, today. There was a schedule mix-up. And then my crazy life...

My mother having been in the hospital for a week, and now in a rehab facility, ended up requiring hours and hours of my time each day, and has left me functioning on bare minimum efficiency (if even that) in the rest of my life.

And then there was the BlogHer Writers conference yesterday, which was wonderful and inspirational, but I didn't really have the time to attend. Even though I did.

All this leads to the matter at hand: I have neither a guest post nor time and brain cells left to write a new one myself. So what I thought I would do is to recycle a post of mine from this past spring that I believe not that many folks got to see... A snapshot of a day in my life with the boys together.

It's not pretty. The post's original title was "Fight Club." Read on:

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I hear the volume increasing, and my stomach tenses. Still, I ignore, stay turned to the task at hand, dinner in the making: skins thinly peeled from slices of ripe-bursting peach, rice steamed to softness.

And then the pitch rises again. And the thuds. And the keening. And the wail. The wail that cannot be ignored: Mooooooooooommmmaaay!

In their bedroom is a tangled mess of snot and confusion. Jacob with glasses awry. Ethan with hands on temples, shrieking “He head butted me, he head butted me!”

Jacob, alternately growling like a caged lion and laughing theatrically, a perfect rendition of a cartoon villain's world-destruction-anticipating cackle. Ethan now lurching at his brother with clenched fists and a growl of his own, “I’m going to kill him!”

And me? I’m in the middle again; sorting, soothing, trying to make sense of the senseless. I don’t even bother asking what or who started it, for these things just start.

Ethan is maddened by this idea, full of indignation and bluster, dead sure of his own absolute blamelessness in the matter. “He’s the worst, the meanest brother in the world! He took my Pikachu, he laughed at me when I tried to take him back!”

I could explain, for the hundred thousand and second time, that there is not the same purposefulness behind Jacob's actions as there would have been had Ethan been the perpetrator, that the motivator is not cruelty.

But why?

Ethan knows his brother has autism. He's never going to be happy about it.

Once again, the physical damage is minimal. The psychic, massive.

Ethan’s anger is a wildfire, burns blue-hot, consumes all in its path. He spits words at Jake through gritted teeth “Do. Not. Laugh. At. Me. Ever. Again!” Which Jacob, of course, cocooned in his autistic obliviousness to much that is normal human discourse, finds hysterical.

Jake love, love, loves his brother brimming full like this, is getting his lasered attention, for once. And just to ratchet up the annoyance factor? Begins to repeat his usual mispronunciation of his brother’s name in his most grating sing-song voice: “Oh, Eeee-fan” giggle “Eeeeee-fan” giggle.

If glares could kill, Ethan would be the only man standing.

Thoughts of dinner temporarily abandoned, separate them I must. Jake to remain in their room, Ethan to come with me into my bedroom; to float in the middle of my big bed, try to find his calm, regain his rudder.

Sponge Bob on the TV providing perfect distraction, I return to the scene of the crime, find Jacob rubbing the spot on his shin that will surely sprout a game-token sized plum splotch by bath time.

Mystery bruises his usual specialty, at least this time I know the culprit: bed-frame.

"Are you Okay, Jake?" I ask.

"Efan was MAD!" he says with glee.

"Yes." I agree, breathe deep, dive into an explanation made as simple as can be, but still fitting the bill. "When you took his toy he got mad. And when you laughed about it he got madder. It's mean to laugh at people when they are mad or sad, Jake. Do you want to be mean?"

And then he's got his contrite face on. The one he pulls up when he knows he's done something wrong, but can't understand for beans precisely what. "No" he answers, fairly sure that this is the right answer, the one that will grant him hugs and cuddles, absolve him of all transgressions.

And it does.

"Come here, honey," I say as he climbs into my lap, my eight year-old, eighty pound toddler.  I put some music on the radio and we sway together for a minute, but stomachs are grumbling and dinner sits, bereft, barely halfway complete.

Ethan's laughter trickles through my bedroom doorway, mood lifted by the magic of television, as I make my way back to the kitchen, to settle once again into the rhythms of cooking.

Then, to pick up the scattered fragments, to shake the jangly shards of our family back into a familiar shape.

Dinnertime.

Let's eat.

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That's all folks. A real guest next week, I promise!

Also? Last week's WONDERFUL SNSS guest post, The Bucket and the Mandrake, inexplicably didn't get any comments. Please remedy that by clicking over, reading and commenting. Thanks! 



Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

SNSS: The Bucket and the Mandrake

Today, SNSS is going hyper-local. My guest today, Michaela Searfoorce, is someone I actually met first in real life and not the bloggosphere. (What? It happens!) She lives in my neighborhood and our sons were in the same special needs "challenger division" basketball league. 

Furthermore Michaela is a major force in the New York City Upper West Side Special Needs Parenting community. I had found out about the basketball league at one of the regular monthly informational meetings that Michaela organizes.

Her blog The Foorce (a fun play on her name) is mostly focused on providing support and resources for our local New York City special needs community, but is also a place where Michaela shares some of her personal story from time to time.

She is the mother of three children: 11 year-old James and his two young sisters. James has a rare chromosome defect which has resulted in numerous medical issues, global developmental and physical delays, and labels such as PDD-NOS, Sensory Integration Dysfunction and ADD.

Chances are, if you have a special needs child(ren), they have at least something in common with James. I can tell you firsthand he is a delightful boy with a huge heart and I was always happy when he and Jake were paired up together in basketball practice.

Read on, now, for a glimpse into Michaela's wonderful family, a pair of life-slices that add up to a beautiful thought:

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The Bucket and the Mandrake: Two Small Stories, One Big Lesson - by Michaela Searfoorce

"Mom, help!"

James looked tearfully after the preschooler who was sauntering away with his bucket. Though he is 11 years old now, James is unable to stick up for himself in many circumstances, even with children half his size and age.

After asking politely (meekly, in my opinion) for his bucket back, the boy who grabbed it said "no" and walked over to the other sand area, leaving James to dig around pathetically in the sand with his shovel. I could tell he was upset, both frustrated and embarrassed by his fear of confronting the other child.

"Give James his bucket back right now!"

No, that wasn't me. It was my 2 yr old daughter, jumping down from a nearby jungle gym and charging after the offender. She reached him and ripped the bucket from his hand, yelling "Leave my brother alone. That's his bucket!"

The boy stood there, mouth hanging open. So did I. My daughter marched the bucket back to James and proudly announced, "Here James. Here is your bucket! It's okay!" James wiped his eyes and said gratefully, "Thanks, Margaret."

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"Mom, help! No - don't do it!"

Flash forward to the Harry Potter exhibit in Times Square. I had decided to brave the trip alone while Ryan was at work, and as a consequence was having trouble keeping as close an eye on both James and my 2 year old as I would've liked.

The exhibit was a cool collection of trinkets, costumes and props from the Harry Potter series. James has read all of the books, seen all of the movies, and was even Harry Potter for Halloween last year - I fully expected him to be in love with the place. And he was, aside from some initial anxiety when the sorting hat was placed on peoples heads and loudly started sorting them into Hogwarts houses.

About halfway through the exhibit, Margaret and I were standing by the mandrakes while she eagerly pulled each model plant out of the soil to hear it screech.

For those of you who are not Potter fan(atic)s, mandrakes are small, ugly potted creatures that live in the soil - when you pull them out they emit a cry that renders a person immobilized. Full grown mandrake cries will kill you (don't worry, I'm not ruining a big part of any book!), and in the books students would wear special head gear in order to protect themselves.

So when James saw Margaret across the room, gleefully pulling mandrakes from the soil to listen to their cries, he flew into a total panic. He ran to the far side of the exhibit (self preservation) while screaming, "No! No Margaret! Stop touching them! Mom! Help Margaret! Don't do it, Margaret!"

Everyone froze at the sound of the screams. Tourists young and old looked around the room for "Mom," probably wondering whether this was part of the show or if this large pre-teen was actually terrified of a fake potted plant.

I rushed over and explained to James that they weren't real and that it was okay to pull the mandrakes out, but he wouldn't hear of it. He remained hysterical until we moved Margaret out of danger.

Five minutes later they were both throwing quaffles at quidditch posts. (I don't have time to explain everything about Harry Potter here!)

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I know that some day Margaret will bear the brunt of the "hero responsibility." At 2 years old she already looks out for James in a way that makes me proud.

But, it is my most sincere hope that when she's older she will still be able to remember these times when James bravely tried to come to her rescue as well.

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Reading this lovely post, I found myself once again wishing I had somehow been magically able to provide Jake with a little sister to look up to and after him.
 
And then I read some of Michaela's "Patience and Foortitude" posts on her blog about the challenges of life with a big special needs kid, a toddler and a baby... and I rethought that one.

Having had a little glimpse into Michaela's family here, you should definitely follow her home to her blog, The Foorce, to read more. If you are New York City local, read it all, there's some great resources there. If you're from elsewhere and want to skip the local stuff,, the posts in the "General" category are where you'll find the personal, family ones. 

Start here with this one, about a particularly exhausting evening: Patience and Foortitude, Part 3: Just Foortitude This Time, With Special Guest Appearance By Windex  (and yes, I've finally found someone who makes my often long post titles seem pithy).

Also, try this post about a milestone - riding a Ferris Wheel - that may seem small to some, but we special needs parents know better.  Or this one, a letter of appreciation on James's 11th birthday. 

Finally, if you want further proof of what a supermom Michaela is, read this pair of posts about James's heartbreaking massive "poop incident" at his school (due to his medical issues) and how his mom talked to his inclusion class about it (and answered other questions about James' differences) so that he would be safe retuning to the school, afterward.

Thank you so much, Michaela, for sharing your wonderful son James, and the rest of your lovely, special family with us today.


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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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SNSS: A Tale of Two Brothers

Today's SNSS guest, Laura Shumaker is the mother of three sons, one of whom, Matthew, is on the autism spectrum. While she is more of a veteran, no longer quite in the trenches with us, as her sons are older, she does remember it all, quite clearly.  

If her name sounds familiar, it is because you may have read her wonderful memoir: "A Regular Guy: Growing Up With Autism" about life with her son, Matthew. The book's sub-title, "A family's story of love and acceptance" lets you know exactly where she is coming from. A beautiful place. 

Besides this book, Laura writes an autism blog for The San Fransisco Chronicle's online site SFGate, at her own eponymous site, Laura Shumaker, as well as for a number of other venues, including CNN.com, NPR Perspectives, and 5 Minutes for Special Needs. 

Her work is inspirational, the mission statement on her blog: "launching teens and young adults with autism." And this is exactly what I need to hear: tales of launching, of success.

While her sons have, by now, grown into young men, the story Laura chooses to share with us here comes from a few years ago, when her son Matthew and his NT brother Andy were both (yes, BOTH) in college. So come, now, read, and be inspired:

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A Tale of Two Brothers - by Laura Shumaker

It was an icy cold morning our Northern California town. I tapped lightly on my son, Andy's, door to wake him for an early morning flight back to the east coast, where was freshman in college. During his three week winter break, my husband and I were struck by how little time he needed to spend with us.

Though he was perfectly pleasant, he was always in a hurry to be anywhere but home.

"Have you had a meaningful conversation with him?" I asked my husband after a week and a half, "I sure haven't." "No," he sighed, "but he's thrown me a few lines." Paranoid that we had gone wrong somewhere along the way, we polled our friends in similar circumstances, and they assured us that his behavior was normal.

"Join the club," they laughed, so we relaxed and made ourselves available for conversation and meals, and were grateful for the scraps that came our way.

It was clear, however, that Andy couldn't wait to get back to school, so much so that I was ready for him to leave.

Just as I took a quick swig of coffee before our trip to the airport Andy stepped out fully dressed, packed and ready to go. The night before, he had printed out his boarding pass and arranged for a ride from JFK to his school in Connecticut.

Amazing.

It was quite a different scene one week earlier, when Andy's 20-year-old brother Matthew, who has autism, prepared for his trip back to Pennsylvania, where he attends a special school.

"Mom," he had said the night before his trip, "I need to make pancakes in the morning."

His flight was at 7:10.

"Of course," I said. It was an outrageous request, but one I'd anticipated. Travel days were hard for Matthew, and sticking to his routine would increase the odds of the day being a successful one. So we were up at 4:15, setting his place at the table and warming the griddle.

After breakfast, he counted the money that he had earned during the break doing garden work, and left it piled neatly in the drawer next to his bed. It was no use telling him to put it in a wallet or the bank.

"I like the dollars stacked," he said, "and we're not going to talk about it anymore."

I looked to see if he had cut his bangs the night before, another one of his pre-travel rituals.

Oh, man, he sure did.

Matthew is high functioning but socially inept, and it's necessary for him to fly with a helper. Today, he would be flying back to school with a young woman who worked at his school. She had flown Matthew home and had been touring California during his stay.

During visits home, Matthew, a self-proclaimed landscape specialist, is obsessed with garden work--mowing, blowing and edging with precision.

When he is not doing it himself, he studies other garden crews in our neighborhood and around town. They all know him and are kind to him, as are the neighbors for whom they work.

This year, after three or four days, he grew tired of gardening and announced that he was ready to hang out with his friends. The only problem is he has no friends.

"You can go to the movies with me and my friends," Andy offered as he always does, but Matthew refused.

"I have my own friends," he said proudly, and proceeded to call people who had been kind to him five years ago during his first and only year in public high school.

He called them over and over and over. Their mothers took most of the calls, and I'm sure they wondered why I didn't put a stop to his obsessive behavior.

"Matthew," I said, "calling once or twice is fine, but if you keep calling, that's bothering, and you'll make people angry." I told him that when I was his age, a guy I liked called me too much and it drove me away.

"But did you still think he was nice?" Matthew asked, his lip quivering.

Before I could answer, the sound of a lawnmower around the corner distracted him, and with the promise of a friendly garden crew he was off with a grin. I could exhale for the moment, but I remained constantly on edge until delivering him into the hands of his travel companion for his flight back to school.

"Having a brother like Matthew will make Andy a better person," said well-meaning friends when Matthew was first diagnosed with autism at age three. While their words were meant to comfort and encourage me, they implied that tough times were ahead for baby Andy, which strengthened my resolve to protect him.

Andy was five when I first noticed playmates in the park teasing him about his brother's hand flapping, and I flew to his side, ready to take on the little jerks.

"He has a brain problem," Andy was explaining to them cheerfully, "He can't help it."

The boys nodded anxiously and backed away.

"Andy," I said with a lump in my throat, "I'm so proud of you. That was very loyal." "Thank you," he said, "I'm proud of you, too."

It wasn't long, though, until the novelty of educating his peers wore off, and by the time he was seven, I watched Andy's exuberant explanations turn defensive, and I swooped in with suggestions of snappy comeback lines for him to use in a pinch.

Takes one to know one

WHATever

Get a life!

But by the time he was twelve and entering his middle school years, Andy got tired of using all of the clever lines as Matthew's impulsive behavior and public meltdowns increased.

"Andy needs a break," I told my husband. "Why don't you go to his game today, and I'll stay home with Matthew." Andy seemed pleased with this arrangement, but when he came home, he looked strangely sad for a boy who had scored three goals.

"I had such a great game," he said. "I wish you could have been there."

Soon after, Andy stopped having friends over and started refusing invitations.

"The last time I went to a friend's house," he said, "they asked me why we never hang out at my house. I don't want to say 'because I'm tired of apologizing for my brother.'"

"Would you like to talk to someone?" I asked, "or maybe join some kind of a sibling support group?"

"Or could I just talk to you sometimes?" he replied quietly, "and sometimes can we do stuff-just you and me-without Matthew?"

"Oh, of course!" I said, choking up. And, wouldn't you know it, the next day Andy had a slight fever, but we decided he was well enough to go to Pier 39 with me for the day.

The next few years with Matthew were especially hard, and Andy prided himself on being one of the few people in the world who could calm Matthew down when he was upset, and on being the one who could make Matthew laugh the hardest.
 
"I've got him," he would say when Matthew climbed off the yellow school bus in tears. The two would go out to the mulberry tree in the back and sit on opposite branches until Andy got Matthew to smile. When they walked back in the house, Andy flashed me a secret victorious smile, and I put my hand over my heart in reply.

When I was having doubts about whether or not to send Matthew to a residential school, it was an innocent comment from Andy that helped me make my decision.

"If he goes, maybe both you and Dad can go to my games."

A month to the day that Matthew left for his school in Pennsylvania, Andy, who was now in ninth grade, burst into the house after school looking nervous but exhilarated. He asked if I could help him clean up the house-now.

"Luke and Greg are on their way over!"

I couldn't even remember the last time he'd had friends over.

Within minutes, the clutter of the house was stacked on my bed, the house was vacuumed and the toilets cleaned. I was shoving the mop back in the closet when the doorbell rang.

"Hi, guys," I said, grinning like a modern June Cleaver. "He's back in his room."

Before I could bake the cookies that I had thrown together in my manic state, the boys rushed out laughing and announced they were walking downtown. They flew out the front door, and I burst into tears.

The morning Andy was born, I still thought Matthew was just a regular two-year-old, and I worried whether I could ever love this second baby as much as I did the first. The feeling evaporated the moment I was alone with Andy for the first time in my hospital room, kissing his fuzzy baby head and studying his chubby hands.

Now I had not just Matthew, but brothers, and I imagined the two growing up together. Andy would look up to Matthew, and learn from him. When they were in school, the teachers would say, "Oh, you're Matthew Shumaker's brother!" and Andy would beam.

They would drive around together as teenagers, have the same friends, and I would raise them to be loyal to one another. They might go to different colleges; that would be healthy. But wouldn't it be great if they lived near each other as men and if their wives were friends?

I could never have known that Andy and Matthew would blossom at about the same time-3000 miles apart. I couldn't have imagined that Matthew would be an autistic young man, and that I'd be grateful that he was living and learning with teachers who understood him and valued him.

And I could never have guessed that Andy, after suffering through his reclusive period, would experience a joyous rebirth as he entered high school and that he would reclaim the class clown status that had eroded since grammar school.

He would enjoy sports, friends and classes. By senior year, his homebody stage would be a distant memory as he made plans to go to college at Yale.

When I drove Andy to the airport after winter break, he asked me if I had heard Matthew speak Spanish.

"No. He speaks Spanish?"

"He pretends to speak Spanish," Andy said with a smile, "when he hangs out with some of the garden crews."

"Oh, no, that's terrible!" I said, "They must think he's racist or something!"

"Come on, Mom," he laughed, "They think it's hilarious. They can tell he's...you know."

Andy jumped out of the car, dragging his huge duffel bag behind him.

"I love you, Mom. Thanks for everything. And don't worry so much about Matthew. He'll find his way. And you know I'll always look out for him."

He walked into the airport, and I drove away, conscious that my 18-year-old son had just thrown me a line. But he meant it.

And I grabbed it gratefully.

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Reading this post,
 my heart aches, nearly breaks open with the hope that some day Ethan will come into an easier relationship with his brother the way her Andy has.

I also had the pleasure of meeting Laura in person at the Special Needs Parent Bloggers mini-con that took place within BlogHer11 this summer. And I can state unequivocally that she is as lovely and encouraging in person as she is in print.

So having read this here, you are certainly going to want to read more words of wisdom from Laura. You'll find her on her website, Laura Shumaker, and herSan Fransisco Chronicleblog.

First, you simply MUST read this incredibly touching post written by her NT son Andy about his brother.  Then, if you haven't yet, you will want to read her whole book, a taste of which is here on her site.

Also you will want to read her San Fransisco Chronicle blog for the community information as well as personal stories, especially this VERY important post about how to deal with the POLICE. This information is vital, potentially LIFE SAVING when you have a large son like I do.

Finally, you should also go "like" Laura on her book's Facebook Fan Page. and by all means follow her on Twitter, too!  

Thank you, Laura for sharing your wonderful family with us here today.


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