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: 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."

~~~

"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!)

~~~

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: How Will They Know?

Today's SNSS guest? Has more kids than you do. OK, more than 99.9% of you do. She has seven. Which is why Caryn Haluska tweets as @ihave7monsters and refers to herself as the "Monster Momma" (& her home as "Monster House") on her blog Living with Logan.  

Caryn writes about life with Logan, her 3 year old son with issues (ASD, SPD, seizures & severe food allergies) and the rest of the gang, including Logan's twin who has some SPD issues of his own.

It's a busy, busy household. But one that is also clearly full of love and understanding, if rather shy on peace.

Although she gets some flack for it, she stands by referring to her kids as monsters. It's because she means it like Jim Henson's monsters: adorable and unique.

Her blog's tag line is: "What we've learned as a family because we have the HONOR of Logan being a part of it" and that beautiful sentiment says it all about where she is coming from, always.

So now it's time for me to stop talking and for you to read Caryn's lovely essay about her family, here:

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How Will They Know? - by Caryn Haluska

I sit outside, contemplating the opportunity I've been given to contribute to this series. I think about what to write, while enjoying the cool of a late summer night in Southern Utah, breathing in the smell of flower pots dripping with pansies, alyssum and violets, and listening to the crickets sing.

The stars wink at me as I compose in my head what I will write about my beloved Monster House. This is my sanctuary~ a front porch step late at night, and the serenity nature offers.

It is, in fact, the only time I get to have absolute quiet and “me time.” And it never lasts more than ten minutes. So, I've had my ten minutes, and have come in to write. I'm hoping it comes out as well in print as it did in my head.

Life in a family with seven children, even if they were all NT children, would be hectic. Life in a family with seven children, one of whom is on the autism spectrum, has SPD (extreme non-seeker), seizures and crazy amounts of food allergies is somewhat more than hectic. Add in a couple of older sibs with learning difficulties, and a twin with SPD (total seeker), and things just get more interesting.

To prepare for this submission, I asked the monsters (1-4, as #5 was already asleep) to give me three words each about Logan, in no particular order, with no particular subject... just the first three words that popped into their heads when I said Logan's name. They didn't even have to be polite, as long as they were honest.

The Daddy liked this idea so much, he joined in as well, so I'm including his contribution, too.

#1
Cuddle Lion Logan

#2
sweet
honorable
cuddly

#3
cool
cuddly
soothing

#4
honorable
emotional
enjoyable

The Daddy
Attitude
Daredevil
Smart!!

Logan is his siblings' favorite teddy bear. They fight over holding him, and they cry when he's had enough and wants nothing more to do with them. He can make them laugh, and he knows just how to get them to come running with a well thought out shriek.

He can make them jealous, and he can make them proud, all within the same few minutes. Truly, Logan and #6 have brought all my children closer together.

The first thing everyone should know is: Logan and #6 are the babies. They just turned three at the beginning of the summer. The “older kids,” as we call #1-#5, range in age from 17 to 6, so I am extremely blessed to have a lot of help where Logan is concerned.

Logan's phenomenal progress in speech, motor skills, and other areas is largely in part to the efforts of his older brothers and sisters.  So much so, I have had to put my foot down upon occasion and remind them, “Logan is not a trained monkey! Let the child alone for a bit!”

Certainly, we are not without flaws. There have been occasions where one monster or another would become upset with the amount of time it took to arrange therapies, doctors' appointments, write for the blog, talk to other special needs parents, etc. We have had to squash all the monsters' hopes of having a pet because of Logan's allergies, much to the dismay of #3.

My #4 especially, has a rough time. She kept asking why Logan was the only one I wrote about, the only one with a picture in my blog header; at one point she asked why he was the only one I loved.

She is largely the reason for the blog makeover, and my shift to more posts about everyone. I am proud of ALL my monsters. I never want them to wonder.

As part of an agreement I have with the older monsters, I don't write a lot -if at all- about their learning difficulties. They are my #1 and #2, and they read my blog, along with their friends.

They are so proud of Logan. I think their struggles have helped them be more compassionate and understanding with him. My #2 and Logan have a special bond that defies explanation, and it has been so since the very first time they saw each other.

It's difficult for the older ones, I think. They are old enough to understand the definition of the “R word”, and have heard it said in reference to Logan by small minded people around town. But they just don't understand why the “R word” would apply to him. 

It is hard for them to think of Logan as having any kind of disability. They truly don't see it. At the Monster House, he's just Logan... not autism, not SPD, or anything else. He's their brother. And that's how we like it.

When I told them the other day at dinner that I had a meeting to help the school get ready for him, every last one of those monsters looked at me like I was nuts. And #1 asked the question for all of them: “Why? What's to get ready? He's coming to school.”

We agonize as parents. I question myself constantly, wondering if I'm being as accessible to all my monsters as I am to Logan and #6. The Daddy makes a concentrated effort to spend time with each child one on one after work, though he travels for business frequently and his time is not his own as often as he would like. It is things like this, I think, that causes siblings to lean a little more on each other, and grow closer.

I love watching the monsters together. There are fights, certainly. Far more than I am comfortable with. And there are times that the verbal warfare escalates to physical. We have raging teenage hormones and 11 year old drama queen syndrome.

There are twinnie meltdowns that are so intense I simply am not able to be available to anyone else while they are going on. There is jealousy, and resentment upon occasion. I hate having to say to one monster or another, “I'm sorry, baby. I just can't. I haven't slept. Logan and #6 had a very rough night.” It's all too frequent an occurrence, and I have a physical ache every time.

We incorporate family time with therapy. Most times it works. We have disco floors out of couch cushions. We have crazy fun cutting paper with scissors for no purpose other than, Logan likes it and it's great for fine motor and hand/eye coordination.

We go on walks together while the twinnies learn to ride tricycles. We play around with new “Logan safe” recipes. That rubber bread will go down in family history.

Our largest quality is the ability to adapt. I hope we never, ever lose that.

But I wonder, when it's all said and done... will my best have been good enough? Will they all know that they have special places in my mothers heart, that Logan and #6 are not the only ones there?

And how can I make sure of that? How will they know?

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Reading this post, I just kept thinking about what a gift it is for Logan and his twin to have such an involved, loving family. And I want to hug Caryn and tell her: "Of course they know, it shines through in every word you write."

So now that you have read Caryn here, you are going to go follow her home, right? You will find her at her blog Living with Logan. Try this post, where Caryn shares why she lovingly calls them "Monsters", or this one about how hard it is to grocery shop for (and cook for and feed) a child with severe food allergies.

Want to see the magic she talks about between her big boy #2 and Logan? Look at this post here.  Want to laugh? Read this hysterical post about how #5 became notorious.

Also? You are definitely going to want to follow Caryn on Twitter, and go "like" her on her Facebook page.

Thank you so much, Caryn, for sharing your large, wonderful, funny, loving family with us here today.  


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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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Wordless Wednesday: Beach Day

Really I've been talking about it for days, did you expect pictures of anything else?

I think I may ACTUALLY go wordless here today, let the pictures do the talking. But, um, they're allowed to have CAPTIONS, right? Goooood:

A boat! On a boat to the beach!

Nearly there...

Ocean: spotted!

Yes, it was one of those *perfect* beach days.

After our big swim, Jake spent a lot of time in the sand.

Jake loves him some sand. (SPD)

Ethan, on the other hand, was quite happy in the foamy shallows,

hanging out with his friend,

and helping some kids build a sea wall.

Anyone ever doubt me when I tell them Jake is a sensory seeker? Didn't think so.

 Jake made it his business to get as sandy as possible.

Very sandy.

Very, very, very sandy.

Sandy but happy. Win.

I’m linking up to Wordless / Wordful Wednesdays all OVER the place... at Angry Julie Monday... at 5 Minutes for Mom... at live and love...out loud... at Dagmar*s momsense... at Parenting by Dummies.


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Firework

Katy Perry now takes up real estate in my brainspace. Whether this is for better or worse? Doesn't really matter, it just IS.

Every time I see, hear, think of fireworks - there's Katy belting out "Baby you're a firework..." Pretty much unavoidable this time of year, being the Fourth of July and all.

It's a damn catchy popsong. Plus there's that amazing, moving, meaningful video. It's old news certainly, out since last fall, but I catch on slow, being such an old lady. (You HAVE seen the video right? If not, head to the bottom of this post immediately.)

What really cemented it in my mind was hearing the graduating middle school kids singing the song at Jake's Special Ed school's end of year celebration. To hear these amazing kids, who have faced such deep learning challenges and persevered, singing this anthem of self-worth: "...it's always been inside of you, and now it's time to let it through..."?

Well, I fell in love with the song a little (and bawled my eyes out a lot, thanking the gods of waterproof mascara).

Sadly, we didn't get to see actual fireworks this Fourth of July.  I'm feeling kind of bad for depriving my almost 9 year old boys of this thrill, but it's just so hard to get to see them here in New York without spending insane amounts of time in insane crowds and for 2 out of 4 of our family members that would be sheer torture.

I was about to write "I have always loved fireworks" but then realized this is so NOT true. As a teenager and adult? Yes. Even as an older child, yes.

But as a little kid? Fireworks were a big problem for me. One of my earliest memories is watching them out the window of our Riverside Drive apartment and being shocked, baffled and TERRIFIED because I was in physical pain, and everyone else around me seemed unharmed; pleased, even.

And fire CRACKERS? Don't let me go there. As a child I was truly terrified of firecrackers to the point of being thoroughly phobic. They scared the everloving shit out of me.

One time, after we'd moved to the suburbs, my family had come into the city to go out to dinner with another family in Chinatown. No one quite realized it was Chinese New Year, or what that might mean for me.

When we went in to eat it was still daytime, and relatively quiet. But by the time we emerged in the evening, it was a full-blown firecracker inferno. I had to be carried, screaming and blubbering, down the stairs, through the exploding streets, to the car.

The memory is etched into my psyche. I thought I was going to die.

In hindsight? I can unequivocally diagnose my child-self with Sensory Processing Disorder (SPD), hyper-sensitive variety. Yes, as a child loud sounds were actually physically painful to me. Very.

And as I had outgrown it as I got older, I had just completely forgotten about my childhood sound/pain connection. Until I was reading up about SPD issues after Jacob's autism diagnosis. Then it all came flooding back.

Well, I've always said the apple doesn't fall far from the tree.

We know so much about this stuff now, how it is neurologically based. But back then I was just "weird" and often teased by my peers for being "sensitive." I was also hyperlexic.

But these are other stories for other days (and other posts).

Tonight? I leave you with fireworks. Thanks, Katy!




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SNSS: Sibling Saplings

Today's guest poster blogs as the Spectrummy Mummy at her eponymous blog Spectrummy Mummy.  As you can tell from the vowel choice, she is not American, but rather an Englishwoman, whose American Foreign Service Corp husband has been posted back stateside for the past few years.  

We about to lose her to another country soon, and I was thrilled to have had the chance to meet her recently, however briefly. I can happily report back that she is even more lovely in person than on her blog (never a guaranteed thing, as many of us have found out at meet-ups and conferences). 

Spectrummy Mummy is the mother of two young children, a four year old daughter, Pudding, on the autism spectrum (currently holding an Aspergers diagnosis) and her little brother, Cubby, just turned two, who, while not on the spectrum, has sensory issues. Of the exact opposite type as his sister. 

You can see it's a busy, complicated household. Add in the impending move overseas, and a mother could easily become overwhelmed. Yet somehow Spectrummy Mummy manages to keep her calm, clear focus on her children and what they need; manages to keep an open heart, a loving, thankful perspective.

And then she writes about it so beautifully, too. As you will see here, read ...

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Sibling Saplings - by Spectrummy Mummy

I was born and raised in the same place.  My roots grew deep into the soil.  I shared a childhood with my friends, and with our years of shared experiences, we remained friends as we became adults together.  My chosen sisters.

I wasn't close to my brothers growing up, but planted side by side, as we've grown older, our branches have intertwined.  Though I live on a different continent, I feel that we're probably closer now than ever.

It is different for Third Culture Kids like mine.  My little saplings are transplanted from one country to another every two or three years.  Their roots don't get a chance to bury into the ground, but spread like vines across the world.

Many Foreign Service children find it tough to make friends, and instead rely on the closeness of the sibling relationship-friendship with the only person to understand and share their life.  It is not uncommon for such children to describe their brothers and sisters as best friends.  That is how I imagined things would be for Pudding and Cubby.

The seeds were planted two years ago, when Cubby was born, but the signs of autism were emerging in Pudding.  Pudding's sheltered little world was disturbed by this chaotic, screaming, routine-breaking, parent-snatching, attention-stealing, unpredictable bundle of need.  From the very beginning, she was conflicted about his arrival in her life, resenting and pursuing him at once.

Sensory-seeking Pudding was too boisterous in her attentions, and the sensitive-avoider Cubby would scream whenever she came near.  Pudding would lash out at him, or withdraw into herself.  A relationship between the two of them seemed impossible.

I would try to come up with games or sensory play that they might share in together.  Inevitably, it led to fighting and tears.  Everybody felt frustrated and miserable, myself included.  Pretty pathetic for what was supposed to be fun for all.  So I gave up.

I'd concentrate on one child at a time.  Finding something else to occupy the other, or making the most of Cubby's nap time, or the times that my husband was around so we could, at times, divide and enjoy our only children.  I let go of my expectations of the kind of siblings they'd be, and let them just be.

Now things are really starting to change.  Since Cubby turned two, the developmental gap between the two of them is closing.  They find each other funny, get into trouble together, blame each other for their mischief, and fight too, of course.

But mostly, they play; sometimes side-by-side, sometimes even together.  I didn't need to teach them, they are figuring it out together, dare I say, like ordinary siblings.  Ordinary being a word I don't tend to associate with either of them.

I think of Cubby as a sort of hybrid plant.  He has sensory processing differences, like his sister, but without the communication challenges.  He can already tell us with his words the things that bother him, which Pudding would only show through her behavior at this age.  The more I learn from and about one child, the more I can understand, and apply it to the other.

They are still very young, of course.  I don't know what will happen when Cubby's development surpasses that of his sister.  I don't know if autism will create distance, or if moving will bring them closer.

All I do know is that they are experiencing the world together in a way that nobody else is.  They have a unique connection.  The shoots of a budding relationship have appeared.

It is a connection that grows organically, and is cultivated by the two of them alone.  When Cubby couldn't bear to be touched by his tactile-loving sister, she was the one who covered him in stickers, and he let her.  Pudding struggled to do her yoga homework for occupational therapy, and Cubby was the one who motivated her.

She was the one he sought for a hug when he was distraught at his parents for a blood draw that went wrong.  I just have to leave them to it, which is the part I find difficult.

In amongst the thicket of squabbling and demands, they are flourishing.  They are still very young, and they have plenty of time to grow together.  My hope is that if I can just stop trying to propagate a relationship between them, a beautiful togetherness will blossom.  Perhaps it will be perennial.

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I  am truly touched by this sweet, moving, lyrical post; the image of her children as plants growing side by side is one I will keep with me for a long time.  

I am thrilled for Spectrummy Mummy that Pudding and Cubby are starting to find their own way into a relationship now. I can feel how they will grow together, how Cubby will support and help his sister (when he isn't busy annoying her, as little brothers are wont to do).

So now that you have gotten a little taste of her here, you will surely want to go over to Spectrummy Mummy's blog for more.

Be sure to read this lovely post about her awkward daughter transforming into a Mermaid in the water, this moving one about a day when everything was all too much and Spectrummy Mummy dissolved into tears, or this insightful one about how Behaviour Is Communication (note British spelling, she's an Englishwoman for sure).

Also? Spectrummy Mummy is yet another SNSS guest who can also be found posting at Hopeful Parents. Her day is the 19th of every month.  And she posts at the SPD Blogger Network. (Busy woman.)

Finally, you can find and follow her on Twitter and "like" her on Facebook, where she is just as lovely as she is everywhere else. 

Thank you again, Spectrummy Mummy, for sharing your beautiful, growing, sapling children with us. 

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Thoughts on my son's getting older and getting stranger

An odd, tough twist on a familiar saying keeps running through my mind: "The older they get, the further they fall."

And I know I'm thinking about Jake, and how much distance is growing between he and his twin, as Ethan sprints ahead into sophistication, maturity, leaving his brother in the dust.

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Having a toddler on the autism spectrum can be very frustrating.

However wild your other children are, they can be so much wilder. Or, conversely, uncomfortably tame, absent, self-contained to the point of disappearance.

They can be fearful, unable to explore their environment due to anxiety and sensory issues. Or, like my son, so busy exploring, feeding their sensory hunger that thoughts of safety are, well, I was going to say last on the list, but really? They don't even make the list.

It's more like: Safety? What is this safety of which you speak? Ooooh, shiny & spinning... and... he's off.

But also, in some ways, they are not so unlike other toddlers. It's often a (cumulative) matter of degree.

Many toddlers have tantrums (autistic ones usually more so).

Many toddlers are hard to understand, communicate with difficulty (autistic ones usually more so).

Many toddlers have problems with self regulation (autistic ones usually more so).

Many toddlers put odd things in their mouths (autistic ones usually more so).

Many toddlers are out of control in stores and restaurants (autistic ones usually more so).

Many toddlers screech and make silly noises (autistic ones usually more so).

Many toddlers spin and roll (autistic ones usually more so).

Many toddlers are odd or picky eaters (autistic ones usually more so).

Many toddlers seem "crazy" (autistic ones usually more so).

(and I could go on)

So an autistic toddler, while usually beyond exhausting to his or her family, often doesn't stand out quite so much to the world.

Those of us who are there know, can see the telltale signs, but on a playground you have to look hard to spot them among the general chaos.  They can sometimes pass; pass for "normal" (whatever that is).

But then your little kids grow up.

By the time your children are eight and a half, like mine are, by the time they are in 3rd grade (or something like it), depending on how deep on the spectrum they lie, passing's frequency can be limited, to non-existent.

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I am on the bus with my son Jacob and I know we are annoying the person sitting right next to us. But Jake is happy, talking up a storm, interacting with me. So really? I don't give a shit.

(And some days a small part of me is comparing. Comparing what being out with Jake is like, vs. with Ethan. And it's never good for my brain when I go there, so I try to shut that down fast.)

Our conversation puzzles people, they double take because I sound like I am talking with a much smaller, younger child that I am seen with. Jake makes declarative statements I agree with. I answer simple questions (over and over again) with equally simple answers.

"Is that a Dad, Mommy?"

"Well, Jake, that's a man, he might be a Dad."

"He has brown hair Mommy."

"Yes, he does, Jake."

My voice when out with Jake is less casual, more drill sergeant.

I say to Ethan: "Hey, E, our stop is coming up soon, so lets get ourselves ready to get off the bus."

I say to Jake: "Jacob, Next Stop is ours. Jake! Be ready. OK, Up, now. NOW! Right now, Jake! Stay with me!" I am sharp, directive.

Then solicitous: "OK, Honey this way, stay close, down the steps there you go. Good job!" Like with a toddler. My four and a half foot, 80 pound toddler.

And while the annoyance of strangers I easily shrug off, sometimes I can feel looks of pity floating my way. And the pity? That, my friends, is much harder to take.

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And then there is this:

Jake drops my hand in the middle of crossing a busy street and runs ahead to the other side because the back of the phone booth has a big old ad for Rango on it and he must go worship.

When I catch up to him, puffing (I really am too old for this shit) he is so happy, smiling, pointing (Pointing! Terrific!): "Look Mommy! Rango, Mommy! March 4th, Mommy! Rated PG, Mommy!"

And I need to berate him for running ahead, make him understand how serious an offense that was.

But he is sheer joy at this moment and I hate to make him cry which he surely will when I chastise him.

His eyes do go wide and brim with tears when my voice goes stern and my face turns severe; so fragile is my child, so sensitive.

But it's better than those other days when the wildness is in him and he laughs manically at everything, including corrections. Between the easy tears and the crazy laughter, I don't know which one is harder.

On the days with tears I know at least something is getting through to him.

"I'm sorry Mommy" he blubbers "I'm sorry, I'm sorry..." over and over and I am the ogre who has made my sweet son cry.

But if he is ever to have any independence, if he is ever to have any hope of negotiating this complex world without a chaperone standing by? He needs to learn and remember the basic rules of safely, which at the moment are so far from his thoughts.

So I kneel down and hold my son on the busy Broadway street corner, and slowly he calms, complains his glasses need cleaning now. And as I dry them with the corner of my scarf, his eyes light up. "Rango!"

"Rango, Mommy! Opens March 4th starring Johnny Depp rated PG, Mommy!" he proclaims, enthralled by the re-spotted poster.

Even though it is April. Even though he has already seen it. Twice.

He is happy. Again. And thus, so, wanly, am I.

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say


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The Beauty of Blue Bear

Jacob's Blue Bear

He is no longer blue, has not been for nearly as long as I can remember. He once was, there is even the photographic evidence of it.

Jake with Blue Bear (actually blue) at 5 months

Bedraggled yet beloved, he no longer resembles a bear, having lost most of his facial features to the ravages of time and Jacob’s strong teeth and saliva in the time when he sucked and chewed on everything in sight, those many early years of mouthing for sensory input.

But “Blue Bear” he was dubbed and “Blue Bear” he remains, even though “Gray Rat” would be a more apt description of his appearance these days.

Jacob chose him as an infant, out of the many stuffed animals gifted to the boys when they were born.  And from about the age of six months on, they were inseparable.

Jake was the easy to put to bed twin, right from the start.  Once they found each other, as long as Blue bear was in his hands, all was right with the world and off into dreamland they marched together. 

Ethan, on the other hand was not a stuffed animal baby, not a lovey lover.  When he had to have ear tubes put in at 18 months, we were told to have him bring along a special toy for comfort, and he chose his then current favorite: a hard plastic toy tomato from his play food basket.  The doctor’s office staff was quite amused by this, having never seen a child soothed by a toy vegetable before.

Ethan eventually succumbed to the charms of a stuffed brown monkey, and then moved on to a whole family of dragons, eventually hosting a parade of Pokemon and pufflesin his bed.

Ethan and (stuffed) friends, age five

But for Jacob, it is now and forever, always Blue Bear.

When Jacob’s chewing and mouthing was especially fierce, from about 18 months to age three (at which time Jake’s sensory issues were decidedly ameliorated by a course of Tomatis) Blue Bear was a favorite object for this, too.

He was always in Jake's mouth, never dry.  Which led to his nickname among family members and in-home therapists: “Stinky Blue Bear.”  We don’t have a washing machine in the apartment, have to use the laundry room in the basement, only available certain hours, which meant opportunities to sneak the soggy bear out of Jake’s hands and into the wash were quite limited.

So Blue Bear got washed about once a week, twice if we were lucky and very wily.  He smelled… a lot... like wet dog, like old saliva and a little mildewed to boot.  But he survived, we survived, and Blue Bear is still the guest of honor at any table Jake sits.

Over these many years Blue Bear has been Mom-repaired too many times to count. His arms lie flat, their former filling having leaked out slowly, one tiny bead at a time.  His head has been reattached, a bit awry. His stuffing re-stuffed at least thrice.

He has one original plastic eye, the other rendered in black thread, hastily stitched into an imperfect circle that was nonetheless accepted, his owner anxiously watching the process, worried over his one-eyed bear, happily now made whole.

To an outsider's eye, Blue Bear is an ugly old thing, over-washed and worn out, warped from his original shape to near unrecognizability. 

But of course to us, we see neither the chewed upon ears nor the grayed matted fur.

We see only the love that has been poured into him for eight years, the comfort given, the tears snuffled out with head burrowed into his soft, giving, forgiving belly.

We see only the beauty of Blue Bear.

This post was inspired by the Red Writing Hood assignment to write a short piece about something ugly - and find the beauty in it.



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P is for Poopyhead

P is for Poopyhead

Bet you saw this one coming.

Did you even doubt it for an instant?  I have, after all, written of Jacob's sometime favorite word before.

As always there are so many other P's in our lives from which I could have chosen... Pokemon, Public Schools, (Club) Penguin, Popcorn (Jake's favorite food), Prydain (Ethan's newly discovered realm), just to name a few.

But first and foremost, I suppose, would be Processing whose challenges for Jacob rule his and our lives. 

Yes, that's right... now that I've made you giggle with a potty word, hooked you and reeled you in, I'm going to turn it all around.  I'm going to get all serious and talk about my son Jacob and his autism.  Again.  Sorry, I do that all the time, the old bait and switch.  But it works, doesn't it?   OK, stay with me then.

The Sensory and Language Processing Differences (much gentler, kinder word than "disorder," don't you think) are primary ways in which Jake's autism manifests at this point.
 
It took a long time for me to actually process this information when he was young and I was new to the wacky world of special needs: how Jacob might be experiencing life in a way that would differ so far from my own.

I think it is just so hard for people to understand that we don't experience reality and the world with our senses, but with our brain, through its interpretation of our senses.   And if someone's brain is wired a different way, speaking a completely different language then yours, how can you expect them to draw the same conclusions? 

I remember an early OT of my son's trying to get me to understand how his sensory issues affect all of his learning and his ability to function in the world.  She said: "imagine you are walking on a high wire suspended 200 feet in the air between tiny platforms, and with no net.  Are you going to be able to carry on a causal conversation while you cross it, or do you have to put every fiber of your being into your footsteps?  Well, for your son?  Walking across the room on the floor takes as much concentration out of him as the tightrope walk would for you."

That was just what I needed to hear.  I got it.  Snap.

And then I thought about me driving the car.  I love to have conversations and listen to music while I'm driving, as long as I'm going somewhere I know how to get to, and the road and weather conditions are fairly normal and reasonable.  But put me on a winding, unknown road at night, in a rainstorm?  Shut up and turn that damn radio off, I need to concentrate if we're all going to survive. 

And if conditions change mid-drive and there is already a noise filled car?  It may take a while for me to notice that I am getting tenser and tenser, and in desperate need of silence.  And once that silence has been achieved?  Try to talk to me or flip on the radio and I will get nasty and snappish.

These are really helpful metaphors I remind myself of whenever I start to get impatient with Jacob's being distracted by or flipping out over what are ordinary sensory experiences to me.  Or his need for tremendous amounts of input to make sense of a situation your brain or mine would intuit in an instant.

This photo in no way actually illustrates this post. There is no reason to throw it in here, other than to say: look at my beautiful son, Jacob, enjoying his Snow Day today. And since this is MY blog, I can do that. So there.

And then there's the Language Processing piece, that whole other ball of wax, but I've written about this before (last week, in fact).

And besides, you have a bunch of other blogs to go read, the ones that will actually keep you laughing throughout.  Go, have fun.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And no, I am not the only blogger whose letter "P" post led them straight to the potty this week.

Vote for me yet today?  One click is all you need to show me your love!

Baggage

I had a somewhat sad epiphany this past Sunday, when I took a trip with Ethan alone that I have always taken with both boys before.  And it was a real eye opener for me.  One of those moments when you peel back the veil and catch a glimpse of how the other half lives.

Because packing for a day trip with Jacob is like packing for an expedition: multiple changes of clothing (due to his complete intolerance of his clothes getting the least bit wet), lots and lots of food for his special GF/CF diet, vitamin/supplement/medicine packs for a full 2 days (because what if something happens and we need to stay overnight?) 

Also?  A ton of car food, because Jake can get extremely hungry at the drop of a hat (and frantically unhappy when hungry or thirsty).  And a collection of his currently favorite toys to entertain and engage him if he needs to be distracted, soothed.

It takes at least an hour.  We always run late.

Packing for just me and Ethan?  Took five minutes.  I couldn't believe it.  I kept turning around in circles, thinking there must be something else I must do, must pack.  But no, that was it.  Really.

Snow pants for sledding, a single change of clothes for Ethan (we're talking 8 year old boy here, after all, disaster is always possible), an extra pair of socks for me, present for the birthday boy, bottle of wine for the hosts, water bottles for the car, one snack item for the car.  Five minutes.  Done.

And then I nearly wept.

Because most of the time I keep those thoughts at bay, the evil "what ifs," but this just smacks it all up in my face: what life might be like if Jacob didn't have Autism.

Now, I love my son, Jacob to pieces, love who he is, would not change him.  He is full of love, overflowing with joy, enthusiastic in his embrace of the world.

But life with him is certainly 10 times harder than life with Ethan.  And 99.95% of the time I don't think about it, it just is.  I parent him the way he needs to be parented, the work-load is just what it is.

I am not a member of the "oh my life is so hard because I have a child with special needs" moanings and groanings crowd, really want to slap people upside the head that define themselves that way.

(Which is not to say it's not OK to complain, to say "this is fucking hard."  Because you know?  It is fucking hard.  And we are human, we are allowed to complain, should not have to slap on the happy face all the time just to make others more comfortable.  It's just when people constantly throw themselves a pity party and expect everyone else to join in, that truly annoys me.)

But every now and then?  I allow myself to think about it.  To picture that other, "what if" life, with the attendant freedoms therein.  And then I sigh.  And then I set it aside, and get on with it.

(I also daydream about winning the lottery from time to time.)

Also?  I know that there are many whose work-load (if you want to avoid a head smack, do not EVER use the word "burden" around me, either) is so much more intense than mine, who might fantasize about MY life:  Those with severely autistic kids who are self injuring and cannot communicate even their most basic needs; parents of kids who have medical issues that require life maintaining equipment, who need round the clock nursing care, whose mobility issues are extreme.

I look at those parents and while I don't think "How do they do it?" (another big no-no, we SN parents HATE those thoughts and comments; you just do it; because it's your kid, duh!) I do think "thank goodness I don't have to do that right now."  Because it's what I already do, times another 10, or 20, and well, that would be tougher, yet more work.

When the boys were still tiny, maybe a year and a half old, and any outing required military expedition level packing, an out of town friend came to visit with her family, and she was happy as a clam.  She had somewhat older children and, she was explaining, as her youngest was now four, she had her exit pass in hand from the "age of schlepping equipment" forever.  She could pack light for the trip and then traipse about the city unencumbered, procuring any necessary items on the fly, as needed.

I began to look forward to this time in our lives, this passage into relative parenting ease.  And now, with the boys at eight and a half?  I'm clearly still waiting.

But the other day I got a glimpse, a sliver of vision into what it would be like to live that way.  And I liked it, I realy liked it.  And who knows what time and development and maturity will bring to Jacob.  Someday, hopefully, maybe someday soon, we will get there. 

And until then?  There is a large, always packed backpack, waiting for me by the door.  And a deep groove in my shoulder, eight and a half years in the making.

A Real Nail Biter

Sometimes change creeps up on you so slowly you don't even notice it, but there's your kid, seemingly suddenly different.  And you know it's truly not sudden, that it has been evolving for some time, but you've missed it, even though it was going on right in front of your nose. 

That happened recently with Jacob.  I looked down at his hand the other day and noticed his nails were dirty.  Wait - what?  They were long enough to be dirty?  Jacob's nails?

Yep, long and dirty; and I had to double take.  Not because I knew I had cut them recently, but because I haven't seen them this long, haven't had to cut them for two or three years.  Ever.

Because Jacob, you see, is a nail biter.  He is a really bad, constant nail biter, down to the quick and sometimes beyond.

Make that "was."

Jacob loves to pet our cat.

And somehow whatever had propelled him towards nail biting in the past, presumably anxiety, has abated.  I am so happy about this, grateful even, and also somewhat sad that I hadn't noticed until now.

You think you are watching your kids so carefully, but some things just do slip through the cracks.  Especially with Jacob, who doesn't talk about the "why" of things.   We are often left guessing as to exactly what's going on.

Three years ago, we had never gotten an answer as to why he started biting his nails.  Never knew what was at the core of his unhappiness, that the biting of his nails helped with.  Also, at the time he hated having nails that stuck up at all, and biting certainly kept them super short all the time.  So it might have started as a sensory issue that then fulfilled an emotional need too.

Which is the cart, which is the horse?  Don't know, probably never will.

But now?  He's happy to have them growing, a little annoyed at me cutting them, but OK with it when distracted by TV.  Why?  What changed?  Good question.  We certainly don't know now, may never know.

Sometimes with Jacob detective work actually helps us to figure out what's going on.  Sometimes an answer appears weeks, months later, out of the blue.  Yet other times the mystery is just that, remaining mysterious, locked inside Jake's head; his inability to explain, a wall of silence.

Three years ago, shortly after Jacob transitioned from pre-school to elementary school, he had a backslide in his toileting habits.  Jake had toilet trained easily, when he was completely ready, at age four.  Really, one long Columbus Day weekend intensive and he was done.  Zero accidents, dry at night just weeks later, too.

But a few weeks into Kindergarten?  He was having poop accidents.

It appeared he was withholding and then when he couldn't hold it in any longer, it was coming out in skid marks.  And of course, once poop is withheld, it gets backed up, becomes hard, painful to release and a bad cycle has begun, difficult to break, especially with a child who cannot describe what is going on with him.

And we couldn't for the life of us figure out what was going wrong, what had set all this in motion.  That school was not his current wonderful school, communication was not a strong point with them. They were getting mad at me, thinking I had lied about him being thoroughly toilet trained.  I was starting to wonder if something really bad was happening to him in the bathroom at his school.  It was NOT good. 

About three months into this, I had taken Jake to the movies.  We were in the bathroom, he had pooped, and when I went to wipe him, he yelled "NO!"

And as I balled up the awful cheap movie theater t.p. in my hand I suddenly had an epiphany:

"Jake is this toilet paper scratchy and yucky, does it hurt your bottom?"

"YES! Hurts!"

"Is the toilet paper at school like this?"

"YES! Hurts!" 
 
Whew!  Mystery solved.  At home, we used soft, moist flushable wipes and our t.p. is the soft expensive kind, too.  I never would have figured this out except for that moment of serendipity.

Jacob, at eight is now able to communicate much more, often initiates conversations.  But still, mysteries abound.  Like the nail biting.  I am happy it is gone, but a small part of me would still love to know why?  Why?

But asking is going to get me nowhere.  Because about important things like this?  Conversations still often have a circular quality to them:

"Jacob, why are you crying? What's going on?"

"I'm crying because I'm sad Mommy."

"Yes, honey, I can see that. But why are you sad?"

"I'm sad because... I'm crying mommy."

"Oh, honey you are crying because you are sad.  But why are you sad, what is making you feel sad? Did something happen?"

"Yes, Mommy."

"What happened?"

"I'm sad, Mommy.  I'm crying, Mommy."

And on and on.  And I can't make suggestions, because anything I suggest he will agree to.  He would make a terrible criminal suspect, easily confessing to the most heinous of crimes, just to please his questioner, to be able to put forth an answer.

I discovered this the hard way a while ago when trying to get a sense of what had happened during a regular day at school.  I had asked:

"Did you do math, today?"

"Yes mommy I did math"

"Did you read?"

"Yes mommy I did reading."

"What did you read, Jakey?"

"I read a book, Mommy!"  OK, that's likely, and details are not his strong point.

But then to test if this was real information or just agreeableness, I threw in a ringer:

"Did you go to the moon, today, Jakey?"

"Yes Mommy, I went to the moon."

Damn!  Back to square one.

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