Monday, May 28, 2012

Practicing the Art of Invisibility

In this article written by Susan L. Smalley, Ph.D., she explains that we have become a nation full of attention seekers.

Look at Me: Living in a society of attention seekers (click title to read)

She writes,

"When I look around at the number of bloggers, tweets, wikipages, Facebook friends, and outlets for expression, it seems we've hit a crescendo of ‘look at me' activity, a striving for attention enveloping the globe."

She asks,

"Why is seeking recognition so prominent in the West today?"

and more importantly,

"...what becomes less desirable, as fame and fortune move to the top?"

Her answer?

"Things like civic involvement and spiritual engagement have lost ground. So it seems our society is shifting, with ‘attention-getting' moving way to the top - at whatever the cost."

I found her article to be thought-provoking and embarrassing as I too write a blog and fit her description of those who covet attention.

I spent many hours searching my soul trying to reflect on mine and other's motivations. Could I find some relevance and examples of what she was describing?

Perhaps not surprisingly, I thought about my role as a mother of a child with special needs. I thought about how I am hopeful that this role has taught me the importance of bringing awareness not to myself, but to my children who suffer from incurable disease. I also thought about who and what type of mothers seem to gain the most attention from the media?

It wasn't long before images of this....

And most recently, this, came to mind.

It is interesting to me how both images focus our attention explicitly on these mothers.

I wonder if perhaps Dr. Smalley has a point?

In Dr Smalley's piece, she describes her encounter with a South American shaman who was "practicing the art of invisibility."

Invisibility creates an inner energy that allows you to focus solely on the powers of observation and learning. Less energy is focused on yourself, more energy is focused on learning about others.

Dr Smalley explains....

"(The South American shaman) said that he could accomplish so much more from an invisible position than one of fame. I've wondered about that quote for a long time but think that part of the reason is that there is greater freedom to act when action is not tinged with attention-seeking. There is likely more energy available to effect change if one is not expending it on promoting oneself.

Turning a lens on our inward experiences with an eye toward detection of such striving may help shift it into our own lives and possibly our collective consciousness.

I think we all need to value anonymity a bit more. Perhaps if we do, we may find ourselves a little bit more content, happy and kind."

Susan Smalley is a behavior geneticist and Professor in the Department of Psychiatry and founder of the Mindful Awareness Research Center at the Semel Institute at UCLA. Their mission is to foster mindful awareness across the lifespan through education and research to promote well-being and a more compassionate society.

Mindful awareness is a practice that comes to us from a variety of contemplative traditions throughout history. It invites us to stop, breathe, observe, and connect with one's inner experience.
Her words and research resonate with me.

As parents of children with special needs, we are not Tiger Mothers. We are not Attachment Mothers. We are not Helicopter Mothers.

We are Invisible Mothers.

The requirements involved in becoming a parent of a child with special needs include focusing all of our energies on things other than ourselves. We must stop, breath, and observe. In fact, we concern ourselves with such things as learning to thread feeding tubes, assembling walkers and interpreting the results of EEG's. We have had our children fitted for back braces and hip harnesses. We spend much of our time in hospitals and ICU's. We have fought with schools, insurance companies and physicians in an effort to convince these individuals to see our children not as unfortunate diagnoses but as human beings worthy of all of our attention.

And yet these heroic acts go unrecognized. They are just part of the daily routine required to save a child's life. They come as natural to us as breathing.

Invisibility is our strength.

A critical need for parenting a child with special needs is the ability to observe, to become instinctively mindfully aware. We wear our cloaks of invisibility so that we may observe subtle changes in our children. We can detect even the faintest sound of an oncoming attack, a soaring fever, an escalating behavior, a silent seizure.

Yes, I have joined a legion of men and women selflessly devoted to observing and caring for others. These parents will tell you they have little time to care or worry about themselves. They will tell you they are tired. They will tell you they have reluctantly put their dreams for themselves aside.

They will tell you they feel invisible.

But it is these same special men and women who will tell you that raising their children although heartbreaking and difficult, is the most meaningful and rewarding experience of their lives.

With invisibility, there is observation
With observation there is selflessness
With selflessness there is understanding
With understanding there is meaning

Yes, being invisible has its advantages.

Tell me, are you Mom enough?

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Lisa Peters is an invisible mother to two children diagnosed with special needs. She attention seeks blogs at Come visit our family blog to learn more about Prader Willi Syndrome (PWS), ADHD, Aspergers, ESES and other interesting acronyms.....

Friday, May 25, 2012

What we never thought we'd say.

Photo taken by Quinnlin Roberts, age 4
I wrote a little post on Support for Special about what we say. Literally What We Say now that we're parents to kids with special needs.

You know what I'm talking about, the stuff we say that when it comes out of our mouths we can't believe it just did but yet it feels to natural and "normal."

I joke about how typical parents (haha) don't understand this language we've developed.

Like when we say, "Why isn't he walking? I'm thrilled he's sitting."

"If you don't bite me when I give you this shot, you can have a treat out of the treat box!"

"It was a toss up hon, life-saving meds or a vacation?"

"I've got him! I've got him! Just keep his feet from kicking my shins!"

"If you just eat this salad, you can have the Poptart."

"Now how long have we been married? Wait. We just skipped a whole year? We just missed it? I mean 16 wasn't so great we had to have it twice."

A link to the original post and some hilarious (to me) quotes from other parents, go here.  Leave your own if you are so inclined to do so.

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Julia is co-founder of Support for Special, family blogs at and writes for Aiming Low. She owns a 15-year-old marketing & social media firm and is an avid kid lover. Gage (13) and Quinnlin (10) are 5 and 2 1/2  years post kidney transplant (2 friends donated). They still receive a lot of services from our school & health care communities. 

Monday, May 21, 2012

A Little Distance Would Be Swell

Of all the challenges that come with raising a child with social, emotional, and behavioral problems, the one that is most challenging for me is to say it? The relentless need of my child.

I want to be sympathetic and understanding, but I chafe against his constant presence, his need to be near me, his persistent fear that we might be separated by something as large as death or as small as a closed door.

It's the same reason that my children's toddler years were very difficult for me: I am a person who likes her space, physical and emotional. My son Carter is nine, almost 10, and living with him can feel like a constant invasion.

Here's the dirty secret under all this: it makes me angry. Sometimes, I am so unbearably mad that I end up yelling at him and then I am nearly swallowed up by my shame.

I know that he doesn't want to do the things he does. I know that he tries. I understand that all his infuriating behaviors are symptoms, not decisions he's making to drive me nuts.

Funny how thoughts don't necessarily control feelings, though I wish they did.

I'm looking for a message in here, or at least a point, but I can't find one. I'm tired. I'm frustrated. I feel too crowded to think. Sometimes, I'm not philosophical at all about my son. Sometimes, being his mom is just hard.

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Adrienne Jones lives in Albuquerque, NM. She writes the memoir blog No Points for Style

Sunday, May 20, 2012

A Sense of Community

Friendship is born at that moment when one person says to another: “What!  You too?  I thought I was the only one.” ~ C.S. Lewis


Today is a momentous day.  An exciting day.  An eventful day, to say the least.  It is a day in which we will crack out the iPad and the headphones and the weighted toys and the compression garments because it is that important that all of us – my boy included – be present for it all. 

It is the day of our local Walk Now for Autism Speaks and this is the first year in which our family will participate.

This time last year, Jack had been diagnosed with autism nearly two months prior but our feelings were still so raw from the impact of it all that we simply could not bring ourselves to do it.  This was not a place in which we felt comfortable.

This year, however, we are there and we are going to rock that walk.

When I think about gatherings such as the walk, one word comes to mind – community.  Look around you at your local walk, or support group meeting.  No one sits alone.  We all stand united for our children.  Our community, indeed the special needs community as a whole, has an unparalleled ability to rally around one another to provide hope, support, and understanding.

Think about it.  We all have our friends outside of the special needs community, but who else just gets it?  It seems like you only need to be in the room with another special needs mama for a few minutes before you can commiserate with her on your shared triumphs, failures, frustrations, and strategies. 

Our kids all have different combinations of diagnoses, abilities, and deficits, but we all find camaraderie among others who have been there.  We all have a fierce love for our children and we all are prepared to fight for every minute of every day to help our kids.  We’re all eager to share what resources we have for the good of everyone.  It’s not just about my kid; it’s about your kid, too.

Yes, we all need those friends outside of the special needs community who force us, sometimes against our will, to break away from the constant marathon of raising our children and go out to do something as frivolous as drink a whole bottle of cheap wine and watch one of the Twilight movies.  However, it is those times when I get out with my fellow special needs mamas, when we splurge on a nice dinner and drinks and we talk endlessly about our children, that I truly feel at ease.  These are my people.  They understand me!  They’ve been there!  They know what this feels like!

While we would never wish the struggles of our child upon anyone else, it is a relief and comfort to have other mamas out there who have walked a mile in our shoes.  Having a child with special needs may put barriers and obstacles before us, but it breaks down the barriers we place between each other. 

It's this wonderful community in which we find ourselves seeking shelter during our best and worst moments.

I challenge each of you today to pay it both forward and back.  Reach out to one of the angels in your life who stands by you and give them your thanks.  Let them know just how much you appreciate their support.  Then, turn your attention outward and welcome another mama into the fold.  Extend an empathetic ear and be there for someone else.  Let us continue to strengthen this community from the inside out.

As I step out on to that green this morning, I’ll find the mom whom I go have dinner with and give her a hug.  I’ll chat with the mom from my support group.  I’ll say hi and speak with a therapist or two.  Or a teacher.  Or another parent whom I’ve met in passing.  I will appreciate the impact that each of these individuals has on my day-to-day existence and that of my baby boy.  I’ll greet and walk along side these many souls who walk this walk with me, not just today but everyday.

I’ll step on to that green and feel a warm glow, because this is a place in which I feel comfortable. 

Among this community, I find my home.

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3-year old little boy on the autism spectrum.  After her only child was diagnosed at 24-months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  To follow more of her ramblings, like her on Facebook!

Saturday, May 19, 2012

Trying To Have An Open Mind

As parents, we often pride ourselves that we know our children better than almost everyone.  We are told this by their teachers and we really know it to be true.  But every once in a while, something happens that makes you think twice.  There are times where others have a different opinion about things than the parents.  The hard part is trying to figure out who is right.

For Music Man, things have always been easy on this score.  What he does at home, he does at school and vice versa.  Yes, there may be some things that are slightly different, but we see the same things and are almost always on the same page.  For Ballerina, that doesn't seem to be the case.

For the second time now, her teachers are making a recommendation that I'm not sure I agree with.  The first time was when we were in our local Early Intervention Program.  They suggested that she needed an ABA program and suggested arranging for some 1-on-1 work through a local organization.  They commented that she was EXTREMELY rigid and the rigidity of the ABA program would suit her well.  My husband and I couldn't understand how this could work, but we decided to try it anyway.  And, let me tell you, did it EVER work!!!!  She is probably one of the many poster-kids for the success of ABA.  And this taught us to listen to what her teachers have to say, even when it doesn't mirror our opinions.

We are now faced with something similar.  Ballerina's kindergarten placement.  She is currently in the most intensive program offered by our school system (an ABA program with a 1-to-1 student teacher ratio).  She started here on her 3rd birthday (so over 2 years) and she will be entering kindergarten with the new school year. 

There are several different placement options for her.  My thought is that she would be placed in a special education classroom and would spend the next year learning to participate in a general education classroom.  She would start off going there for 30 minutes a day and by the end of the year, it would be for the full day.  But the school representatives recommend that she be placed in a typical classroom from the first day of kindergarten.

Don't get me wrong.  This placement recommendation has me WHOOPING for joy on this inside.  It really is a dream come true.  From Day 1 when we started working with the school programs, I was hoping both of the twins would be ready for a typical classroom for kindergarten.  But now that it is potentially becoming a reality, I'm scared.  Terrified.  Panicked.  I don't know if this is the right thing to do.

First of all, we know from experience that she experiences regressions during the summer.  Where it takes a typical student 2-3 weeks to return to where they were the previous school year, it takes her 7-8.  This is why she is awarded the recommendation to attend ESY (Extended School Year) during her annual meeting in October (normally, they don't begin awarding these recommendations until February).  Second, she will be going from a 1-on-1 environment to being 1 of (upwards of) 18 students with a general education teacher who does not necessarily have the added training of working with an Autistic child.  And, finally, I worry because she is my baby and I'm the Mommy.

I went to visit her at her school recently and was amazed at what I saw.  In order to assess whether this recommendation reflects my daughter's best interest, she has been participating in a typical kindergarten classroom for the last couple of months.  She goes there for an hour every morning (and they are in the process of increasing it to last the entire morning).  When I visited, she knew I was there and she looked just like everyone else.  She sat in her square.  She did what was asked of her.  She listened to instructions.  She has even made a FRIEND!!!!!!

So, now I'm torn.  I don't want to hold her back.  I don't want a diagnosis to hold her back.  But I don't want to push things too far too fast.  Every fiber of my being says that she should start the school year in a more protective environment and then be given the added freedom as she makes the adjustment.  But after what I saw, I have to concede the possibility that the school representatives may again be right about what we should do for her.  Her placement meeting is at the end of the month and we will make the best possible decision at that time.  I'm just so grateful that we have been given such a supportive team who are willing to work with her and with us to maximize her potential!

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Ilene is a SAHM living in the Washington, DC suburbs.  She lives with her husband, puppy and 3 wonderful children.  Big Brother is 7, and the twins, Ballerina and Music Man are 5.  She learned that both Ballerina and Music Man were "On The Spectrum" when they were 26 months old.  They were officially diagnosed 5 months later with "Severe Autism".  Ballerina has since been diagnosed with ADHD and POTS in addition to Autism.

They have both made such amazing progress in the last 3 years.  Ilene blogs regularly to chronicle the family's journey at My Family's Experience With Autism writing whatever feels right at the time.  She calls it her "publicly available online journal" and she invites all to read and share.

Friday, May 18, 2012

Different perspective

Well, I have been thinking...

What do you see on this two pictures?

Cars, right? Nice cars and expensive ones too. Well, at least most of my friends do and about a decade ago I would agree with them.

But in last 6 years I don't see cars anymore. I don't even like to talk about them anymore, although I worked for car industry for more than a decade.

All I can see when I see them everywhere - on pictures like this, or on the roads, or... even when my friends talk about them - and not necessary this three types or marks... any type of car... What I see or picture in my mind is... how many years of therapy for my son with Autism they are worth of:

* 6 years
* 8 years
* 12 years
* 14 years
* 18 years
* etc...

And this is one of the things that changed in me, when our son was diagnosed with Autism. What different perspective you have now, that changed so much in your life?

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Petra is a Writer, Mum of Two, Wife to One... Warrior for a better Future for her child with Autism and for the one without. 
She blogs at

Three-Year Re-Eval

Those of you that know the joys of having a child on an IEP, know the joys of the 3-year re-eval. It’s loads of fun, which generally includes the extra bonus of an IQ test. When I am in charge of the world, the very first thing on my agenda is the abolishment of IQ tests, followed by the SATs, which, if you didn’t already know, drive everything, and are nothing but a huge RACKET. But, I digress.

The 3-year re-eval., a chance to do just that – re-evaluate. I am already in a snit and our next one won’t start until January 2013. They are major triggers for any PTSD that still hangs around.

What I’m working on doing is changing my fear and trepidation about all that lies ahead: the endless testing, the pointless meetings, the same end result, and trying to think of it as a good thing. Re-evaluation is important for everyone. We should all take stock of our lives (not our IQs, however), every three years. What’s working? What isn’t? What are our goals? What goals have we met? Exceeded? Blown to kingdom come? What matters to us now? Where are we going? Why? Why not?

As our oldest gets ready to go off to college in August, and six months later I’ll turn 50, it’s more than time for a re-eval. I might even go so far as to write up a formal Individual Life Plan (ILP), complete with goals, and have everyone I know and love sign it, just to hold me to it:

Goal #1: Have more fun (beyond the fun of playing solitaire on the iPad)

Goal #2: Blow more stuff off

Goal #3: No guilt

Goal #4: No looking back

Goal #5: Don’t fear the future

It’s a start.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at where this is pretty much her favorite topic. 

Thursday, May 17, 2012


I've basically had absolutely no time to sit down and focus on what I want to write this week, (and please forgive me if the following is a bunch of rambling nonsense since I just completed a 13 hour shift at work).  All of my energy and time has been spent this week trying to come up with a way to convince a total stranger, who's never even seen my son, that he is worth continuing his in-home behavior therapy program financed through the county.

My son is 6 and autistic, and like everywhere else these days the budgets for these services are stretched to the absolute limit. I've written letters, obtained behavioral data, collected recommendations from past and present teachers, as well as his pediatrician. I've taken photos of the destruction he has caused in our home. I've described his self-harming behaviors in detail.

His case-worker is coming to my home tomorrow at 3pm to gather all of my efforts and deliver them to this unknown individual who will basically decide the course of my son's future.

Will I convince them of what my son is worth? What he's capable of? Can I make them see all of the potential in him that I see? Is there anything else I could have said or done to get their approval?

And- (although this probably sounds selfish), how will it effect me if he is denied his services? Will I have the strength to keep fighting with these people who don't even know my son? Have never even met him?

All of these questions have been weighing on my mind for the past several weeks....

I guess we'll see....

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JenM. is a Registered Pediatric Nurse, with 3 boys- ages 8, 6, 20 months. Her middle son was diagnosed with autism at 2 1/2.

Wednesday, May 16, 2012


The science museum is particularly dense on Tuesday during spring break. There are families, camp groups and others filling their extra time with this hands-on afternoon. We are used to going during the week when it’s quieter. Addie’s propensity to shimmy right up to the front of each exhibit can be indulged without doling apologies to her left and right during these less peopled visits.

Not today. Her speed and motivation - for this is among her favorite places on earth – will require quick reaction times from her companions, my 12 year old Cate and me. After brief parking lot discussion, we choose not to bring Addie’s push chair (a large medical stroller)in. Cate convincingly opined that we must start encouraging her understanding of the rules about running away; that we need to start giving Addie credit for good choices, rather than taking the option to bolt completely away from her by buckling her in. I cannot argue. Though it does mean that I shall be slinging Addie’s 5 pound communication device over my shoulder, along with her other supplies and my purse, hoping this still allows the agility needed in crowded places with my fearless, fast, nonverbal, intellectually original 8year old scientist. Wouldn't be the first risk taken. Won't be the last.

Addie shows great patience waiting in line to renew our membership and get our admission wristbands. Cate cannot help but laud her sister for this. As soon as I secure Addie’s wristband however, she is off and shuffle-running. Cate and I jokingly wonder if Addie may have some belief that in this high tech playground of experimentation, that she may suppose there is a GPS chip in her wristband that will allow us to track and reunite with her… when it is convenient.   For her.

Snickering at this thought, Cate and begin our day of chase. Addie wears a bright orange jacket and under that, a fuchsia tunic over bright leggings. She glows by design. We follow her fast, small body as she briefly slows her steps near the giant watery great lakes replica. She peeks through the glass into Lake Erie and then reaches over the edge of Superior to splash around in it. She will be soaked from neck to waist shortly. Water features big in many of the exhibits here. Water (and all creatures that live in it) is her obsession. But soon the great hall darkens as shades descend and lights dim. She knows what’s coming and she doesn’t care for it much. The simulated thunderstorm is exciting to her at the beginning when it’s just rain bouncing off the lakes’ surfaces. But when the thunder begins, she must make a choice. We can see her thinking - I could stand here and put my hands over my ears until it is finished, or I can move on. Her hands rise slightly, drop, and then she takes off again, down the stairs behind the exhibit.

Cate and I dodge and weave with less expertise than our orange-coated leader, but we make our way. Urgency is slightly diminished by the awareness and anticipation of an area not far from the bottom of the stairs that will slow our small sprite down again. This basement floor holds huge aquariums with all manner of fish and sea creatures. There are also touch tanks where people can reach into the water to interact with starfish, sea urchins, stingrays and sturgeon. But she must find her way through to get to this and her other esteemed spot. Some of the terrain she must cover will give her pause. There are tanks below foot as you make your way over a class tiled walkway. Fish, rocks and coral are visible through this transparent floor. This higher demand of perception throws Addie off a bit and she requires a hand in hers to feel grounded enough to cross. She will stop at the first clear tile, watching, with her hand out, waiting for one of us to take it.

Today, Cate gets to her first. Once she has crossed safely, she shakes her sister’s hand off and swiftly motors past the jellyfish, around the corner and through the overhead aquarium tunnel. The puffer fish used to slow her down, along with the swooshing current overhead, but it doesn’t merit a glance today. She speeds through. We catch up to her just as she bends her knees and collapses into that position most hated by physical and occupational therapists – the dreaded W sit. She is just a few inches from a wall of thick glass housing the biggest fish in the museum. Already a number of them have crossed in front of her. She bends forward, feet out to the sides, giggling as each one glides by. She glances up when we arrive and knows to shimmy back a few inches. I put her communication device down to the right of her while Cate has a seat on the other side. Addie navigates the pages on her device and states the uber-obvious, “I want to see the fish!” Cate laughs. Yeah. Gotcha, pal.

Cate knows we get to rest a bit, so after chatting with her sister a while, she gets up to go check out some other exhibits near us. I stand back, relieved to have the heavy device off my shoulder. If she wants to talk, I’ll see her navigating the pages and get closer to hear. Within a minute or two, a small girl, stylish beret perched on her head, makes a beeline right for Addie and sits down in front of her communication device. She actually turns it away from Addie and towards herself. I hear a man’s voice near me say “Mikayla, no. That’s not for you.” She ignores him and instead says hi to Addie. I let it go for a minute – neither girl looks to me for any sort of assistance, so I just watch.

Mikayla asks Addie her name. Addie ignores her. The other girl turns her attention back to the communication device. She asks Addie what it is. I have to take a step closer. “It’s a talker. Instead of talking with her mouth like you and me, she uses sign language and that computer to talk.”


“Well, things work a little differently for her and her voice doesn’t work for her the same way as ours does.”

“She can’t talk?”

“Not with her mouth, but she can with her hands and with her computer.” Mikayla looks at Addie again and then looks up at me.

“Wow, she’s double lucky!”

She asks Addie some more questions, some of which Addie answers in sign language while I translate. She chooses not to use her communication device. Mikayla asks me some further questions about the device and about school. Through follow up inquiries, she confirms my guess – she is 5 and will be in kindergarten next year. Mikayla’s dad just listens. His daughter has not a moment’s aversion to Addie’s differences, nor does she seem to view them as the least bit of a disadvantage. I do my best to match her sincere, curious, friendly tone at times when I must interject to keep the conversation going.  Addie is mostly engaged with the fish, but occasionally she turns her attention to this new friend. Addie teaches Mikayla a few signs, starting with the sign for hat, as she admires the girl’s beret. Abruptly, Addie determines it’s time to reach in to touch the stingrays a few feet behind us, so we disengage with our young conversationalist.

We end up meeting her again at many of the exhibits throughout the other floors. Her father’s quiet observation and lack of inclination to stop his daughter’s honest quest for understanding impresses me. He trusts his daughter’s intention enough not to measure it as less important than some floating external notion of manners. Mikayla’s genuine, natural regard for Addie as a fellow kid imbues a hopeful lifting of my face for the remainder of our happily frantic race from feature to feature at the museum.

We see our friend one last time just around the corner from one of Addie’s favorites upstairs: a human-sized hamster wheel you run in to try and create enough energy to light a row of bulbs overhead. Cate informs Mikayla this is where Addie wants to go next just as Addie dashes past her toward it. The astute kindergartener-to-be glances after her and asks me, “Oh! Can she run?”

“Yep, see her? She’s running now. And pretty fast!” Skipping after my girls, Mikayla hollers ahead.

“Addie, you are triple lucky just like me!”

Farmer John Cheese and Other Joy

Tuesday, May 15, 2012

When To Pull The Plug

This week we have Katie's 3 year re-eval meeting. Technically, her next comprehensive eval shouldn't be until January when she is nine, but we scrapped and redid her whole IEP two Octobers ago. The school didn't love the idea of doing testing right out the gate come September, so we all agreed to get it done now.

Next year is third grade. A game changer, of sorts. State testing begins, and a lot more is expected academically. Frankly, I am not sure how we have made it through second grade. The year started out rough, got a bit better, then nose-dived these past couple months. We are also starting to see more issues with reading and writing (although, thankfully, math remains a strong suit).

Katie has been mainstreamed since Kindergarten. Mainstreaming is the ideal, these days, although we have asked repeatedly for at least half days in the PDD class. That, we were told, is the "last resort". For their part, the school has attempted to pile on the supports, especially this year, but it still isn't enough. I know schools love to boast high mainstreaming numbers, and I know some parents love to say their kid is mainstreamed, but we are not those parents.

My child is full of anxiety all the time. Her behaviors are worse at school, and carry over to home. Sometimes I feel like we are living in a war zone. Things have gotten so bad, we were offered home ABA services. For the school to offer anything is quite telling, in my opinion.

Katie just can't handle a class with 28 (yes, TWENTY-EIGHT) kids, all talking and making noise. She isn't as engaged as she should be. She has no friends, and soon the other kids will grow impatient with her differences. She needs more direct help than they can provide. Mainstreaming might sound good, but not when a child doesn't have the basic skills to make it work.

So, here we are again, faced with the decision of fighting to pull K from the mainstream, or keeping her in, hoping for the best. Things aren't going to get easier from here, and it's definitely not going to get easier to teach her how to cope the older she gets. There is part of me that thinks I am somehow betraying my daughter by not wanting her in the general ed class; but, there is another part of me that thinks we are failing her by trying to keep her mainstreamed just to say she's mainstreamed.

It might just be time to pull that plug.

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Jen is the mom of two great kids, Katie, who is 8, and has Autism, and Ben, who is 5, and has boy. She blogs at Still Looking Up, and you can follow her on Twitter @JenTroester

Foot races and acceptance

My heart sank.

Danny insisted that I let him play outside, but that was the last thing I felt like doing at the moment.  We were visiting my mom, and her next door neighbors were having a party.  There was a gaggle of kids in the front yard playing with sidewalk chalk and laughing, and I worried that they would exclude Danny.  Or worse, that they would reject him.

I just didn't want to face this group of kids.  I didn't want to watch them as they sized up Danny.  I couldn't stomach watching them laugh at him or roll their eyes at him.  More than anything, I wanted to convince Danny and Charlotte to go back in the house.  I just wasn't up for the possible hurt feelings.

Danny was chomping at the bit  to get outside and play, though, and he couldn't figure out why I was stopping him.  Of course, I couldn't tell him that my fear was he'd be rejected by these kids.  Danny loves other kids, but often has difficulty interacting with them.  He doesn't understand many of the playground's inherent social rules, and because of that, kids sometimes think he's weird.  He's been called all kinds of names, even the dreaded R-word.

Danny has friends, but they are mostly kids who have known him for a while--friends of the family.  His other friends are from LEGO Club, which is made up of kids who have a lot of the same social struggles as Danny.  Once others get to know him, they often discover how wonderfully funny and exuberant Danny is, but making new friends is where it's tough.  It takes people a while to understand him--his language isn't always decipherable, mostly because he almost always launches into a conversation with no background information for people.  He'll regale kids with the most arcane tidbits about LEGO Hero Factory, while his audience just stares, confused.

So, I braced myself, preparing for the worst.

Danny rode his bike up to the group of kids and announced his name and standing as a LEGO champ without ever making eye contact with anyone.  Then, he rode off.

The kids laughed, and I flinched.  Here we go, I thought.

As a tiny little girl approached me, I wondered how I could explain Danny to these kids in a way that would educate them and not sound like I was apologizing for my son.

But, Samara didn't require an explanation.  She stopped in front of me, looked me in the eyes, smiled, and said, "Excuse me, can you tell your son that if he wants to play with us, he can?"

The rest of the evening, Danny joined these energetic, but polite kids, running races up and down the block. They laughed and goofed around.  Danny made some of his trademark off-the-wall comments and the kids giggled.

But they were not laughing at him.  They were not avoiding him.  They accepted my son into their little group of cousins and siblings with no question at all.  This group was made up of at least three different ethnicities and many different ages, and with the addition of  Danny, it was even  more diverse than before.

No one batted an eye at Danny's idiosyncrasies.  No one worried that Danny was different.  They just played together, laughing, running, and making silly jokes.

These sweet kids taught me an important lesson: not all kids are cruel. Obviously, there will be those who do not accept Danny, but tonight I learned that there are some incredible people out there, people who are welcoming, inviting and accepting of all different kinds of people.

And those are the types of friends that Danny deserves.

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Patty is a stay-at-home mom to three wonderful kids, all of whom have Sensory Processing Disorder.  Her oldest son is also on the autism spectrum.  She is a freelance reporter for her local newspaper and started a LEGO Social Club for kids on the spectrum last year.  She blogs at

Monday, May 14, 2012

Not a New Normal

I hate cliches, especially those about raising a special needs child. I do not think God gives us only what we can handle. I do not feel our life has been blessed by autism or that everything happens for a reason. No matter how kind the deliverer of these messages may be, I do not take comfort in these words.

The thing about cliches, though, is that they often contain a nugget of truth. And no matter how hard I reject the concept of the "new normal" cliche, I do find myself adjusting. Take this week, for example. My son Moe, who is five, has a very hard time falling asleep, and does not stay in his bed at night. So, for his safety and my sanity, he has a bed tent. The tent zips all around, and we use carabiner clips to keep the zippers closed. The other night, Moe was making his usual racket in his bed when he started screaming. We ran in to find he had caught his tongue in the carabiner. We set him free, calmed him down, made sure he wasn't seriously injured, replaced carabiners with twist ties, and put the boy back to bed.

Every few weeks my husband and I have to re-engineer Moe's sleep environment. Those carabiners were an adjustment from other rings that Moe figured out how to open. Moe sleeps in pajamas that zip up the back. And who can forget our build a better diaper project? I imagine for families of typical kids, stories like these would be momentous, told at dinner parties, embarrassing and hilarious antics told over and over, becoming family lore. For us, these weekly or even daily adventures are so numerous, most never get even a second mention. So although there is nothing normal about having a five year old who must be physically kept in his bed, I have come to expect this type of thing.

The truth is, there is nothing in our days that feels normal. No meal, outing, or diaper change is without effort.
Even a couple hours in the backyard requires preparation: close the gate to the dog's run, pick up all the oranges that have fallen off the trees, make sure I have everything I need because if Moe is outside, I cannot go back in the house even for a minute. While friends are choosing kindergartens, we are fighting for services in a system that is failing Moe. While others are planning vacations and finding summer camps, I am wondering if we will ever travel anywhere again.

But on days like today, when the kids pile into bed in the morning to snuggle, even for a few minutes, and we  fill the wading pool in the afternoon and my daughter pour water on Moe's head, and he giggles and runs but comes back for more, I can almost forget. I can squint my eyes and focus only on what is in front of me, and pretend that this is exactly how I dreamed family life would be. It may not be a new normal, but I'll take what I can get.

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Jen Bush also writes at her personal blog, Anybody Want A Peanut, where she writes about raising a preschooler with autism, a neurotypical three year old, and a dog on Prozac.

When the Day Comes to a Standstill

For some reason, May is always a busy month for us.  Not only do we celebrate Mother's Day, our family celebrates 3 birthdays, one anniversary, and of course, writing our daughter's IEP for the coming school year.  Factor in t-ball, track, piano recitals?  Well, you get the picture.  We are bursting with activity!

This past Saturday, my husband and I were splitting activities: I was taking 2 of our children to my niece's First Communion and party and another birthday party after that while my husband took  our son camping for the weekend with Cub Scouts.  I spent Friday night ironing and organizing for a full day: packing extra clothes for the kids, snacks and activities for my 2-year-old for Church, all gifts wrapped and in the car.   All I would have to do is get myself and the kids dressed and ready in the morning and head out the door a little before 9.

Then at about 6 a.m., I heard a commotion in the bathroom.  Yep, Claire got sick.  The side effects of the  migraines, thanks to her hydrocephalus, decided to make an unscheduled visit on our busiest day of the month.  Clearly none of this is in her control, but these are times I really hate her hydrocephalus. We have everything set and scheduled and she ends up missing out on the fun of spending time with her family and friends.  She's missed field trips, class parties, and all sorts of fun activities because of the hydrocephalus.

It angers me that she misses out on the fun.  It also makes me feel like a failure as her mother, like I've let her down somehow.  Clearly this is irrational, and I have learned to be more flexible about cancelling plans, but the loss of control I feel over the entire situation really eats away at me sometimes.

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Jennifer is a mom to 3 children, one of whom is a different learner.  She is passionate about all the things your mother taught you not to speak about in polite company:  politics, religion, and public education.  You can read her blog about her daughter's challenges and triumphs with hydrocephalus and learning disabilities, as well as the parental frustrations and joys of life at A Walking Contradiction, here.

Sunday, May 13, 2012

Happy Mother's Day?

It's the days that you dream of the most that trip you up, isn't it?

During my years of struggling with infertility and failed attempts at adoption, that moment in the Mother's Day Mass when moms stood up to receive their blessing and the collective smiles of the congregation was both painful -- a constant reminder of what I was missing -- and motivating, because it put my goal in sight. One day that would be me.

And one day it was. But my stand-up act took place in the church's "cry room," since it took years for my kids to be Ready for Pew Time. It came after an hour of wrestling with attention-challenged little ones and enduring a less-warm collective stare from fellow churchgoers. If I'd imagined the day as a glorious celebration of my new motherhood, with the sky opening up and a universal recognition of my near-divinity, that's not at all close to what happened. But you better believe I stood up anyway, and held my head high, and grabbed my moment. I'd earned it in a way those more traditional and judgmental moms could never imagine.

It occurs to me that, for parents of children with special needs -- particularly of the behavioral variety -- Mother's Day is set up all wrong. In fact, it's set up somewhat maliciously to ensure the most disheartening outcome. I mean, look at it: traditionally, we start with a worship service, follow it with a restaurant outing, and end up visiting with extended family. Could you construct a more disastrous series of events for many of our kids? All year long, we're all about changing the environment, choosing our battles, planning for success. And on the day we most want to feel like Super Mom, we sabotage any possibility of a positive outcome.

Over the years, my kids have grown more able to tolerate the traditional Mother's Day activities, and I've grown less uptight about them, less concerned with form over content. We'll still go to church today -- I still value that opportunity to stand up and be counted, and my son can sit through a service now, if you don't mind the sound of jingling keys in your pew. Afterward, though, we're going to a fast-food place my son and I have been wanting to try, and then I think there will be many games of UNO with my son (using our own special rules) and maybe a walk with my daughter and some together-time on the couch watching HGTV.

What would your perfect Mother's Day look like -- not the perfect one of your dreams, but the perfect one of your reality, filled with things that make you feel like you know what you're doing as a parent? If you can't get rid of the out-of-control stuff, at least schedule in a few moments of competence, for you and your child. It shouldn't have to be so hard.

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Terri is the guide to Parenting Children With Special Needs and the parent of a 22-year-old with language-related learning disabilities and a 19-year-old with FASD, both adopted from Russia in 1994. She is the author of 50 Ways to Support Your Child's Special Education and The Everything Parent's Guide to Sensory Integration Disorder, and also blogs at Parenting Isn't Pretty.

Saturday, May 12, 2012

No screen-free for me

It may or may not be on your radar, but I am well aware that last week was national "screen-free" week.

We were supposed to shut off all our kids screens for the week, despite their many and loud protestations, and encourage them to engage in the "real world" instead. And the adults in their lives were supposed to join them in this, to do the same, and eschew screens for our entertainment (we were allowed to use them for "work" - no one need get fired over this experiment.)

And while I was reading friends' tweets and Facebook postings over the course of the week, reporting in as their kids adjusted to playing in their back yards, with long-forgotten toys, board games, their imaginations, and each other, I couldn't help but feel sad.  Because we were not doing this at all. Not even trying.

My son Jacob is on the autism spectrum, and the story of his love affair with the screens in his life runs long and deep.  TV taught him to talk. Really. He needed the repetition for things to sink in. At first his language was nearly all scripted from his favorite TV shows. He would use appropriate - or as close to appropriate as possible - phrases from Thomas the Tank Engine, Bob the Builder, Clifford, and Teletubbies to engage with the world around him.

Sometimes he had something really important to communicate and just could not assemble the original language to do. He would then utter a phrase, over and over, that seemed random, but with such emotion, and direct eye contact that I knew it was with utmost importance that I figure out where it came from, and thus contextualized, its meaning would become clear and I'd know what my son was trying to say to me.

An old speech therapist of Jake's once said something to me that crystallized a useful way to view my son's language learning issues. "It's like" - she'd said - "he's learning English as a second language - but he doesn't have a first language. And all his scripts are like those phrases from a little tourist's guide book - handy little stock phrases to use in standard situations. Then as you REALLY learn the language you can begin to customize your phrases, and as the grammar and syntax start to sink into your brain, you can begin to assemble sentences on your own."

And that really has been Jake's path to language. He still scripts a lot, but he also now has tremendous amounts of original language and his sentence structures get more complex every day.  One thing that hasn't changed however, is his love of television. He not only had learned language from it, but all kinds of other things too: recognizing emotions, the rules of friendship, social studies topics.

He loves cartoons and superheroes and talks about Batman and Spider-man and The Green Lantern a lot and also about who their real identities are. The idea of transformation fascinates him, that people change. And in his beloved cartoons that change is so visible, complete, and fantastic. I love that Jake envisions a super- version of himself magically appearing some day.

I wish he could get as much from books, but he just can't. He reads, but comprehension is hard for him. Pictures help, but picture books are usually less complex in story than the TV shows he watches, and Jake loves a robust story, with good guys and bad guys and the world being saved in the end.

So taking away his screens, his TV, would be a big deprivation for Jake. Added to the fact that we live in a small apartment in New York City with no backyard to toss them out into. And my boys REALLY don't get along sometimes (okay, most of the time but I hate saying that over & over) and the only guaranteed way to keep Jake out of Ethan's hair is to let him turn on the TV in my bedroom and snuggle up together - and with Blue Bear - under my covers.

So the "no screens" thing? Not really happening in this house, this year. In spite of how I'd envisioned my childrens' lives when they were infants: with infinitely less electronics involved. Maybe some time in the future. A mom can always hope.

p.s. My day is usually the 10th and I'm sorry I'm 2 days late this time (again).  I had a major event in my life - producing the NYC Listen to Your Mother Show on May 6th, and  also writing about my path to producing the show for The New York Times Motherlode blog - A ‘Sandwich Generation’ Caregiver Heads Back to Work. And I am bouncing back to some kind of normal after all the excitement slower than I'd anticipated. Next month on the REAL 10th - I sort of promise.

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Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.

Living with Ambiguity

Navigating life with a special needs child requires learning to live with ambiguity.  I'm a trained scientist who likes to put some order into our ambiguous lives so early on this journey I started reading research outcomes from clinical trials.  Specifically, I was looking for outcomes vs. various therapies.  I found that scientific trials are often not available on many therapeutic options and, if they are available, often none of the children in the study are similar to my child - a child with multiple handicaps.

Disillusioned with the available information I found it more productive to reach out to other families with children similar to Emma.  Sharing our experiences helped me narrow down which therapies we wanted to pursue further.  Some we liked, some we didn't.  All of us were trying numerous things at the same time so we couldn't uncouple the results, but we often had pretty strong feelings on what was working better than others.

Through our research we found one practitioner we thought would be a good addition to Emma's routine.  So we went for an extended evaluation and asked lots of questions.  The practitioner lived far away, was expensive and not covered by insurance but still we thought we might want to try it out for a few months.

Emma started to make amazing progress!  Her head control made a great leap forward.  And it wasn't only us that noticed the change.  Loved ones, teachers, therapists, and random acquaintances mentioned it to me all the time.  It is still not perfect but it is much improved over what it was only two months ago.  Her sitting has also taken off.  While she isn't sitting independently she needs much less support in sitting.  Taken together it represents remarkable improvement in her gross motor skills that came on suddenly.

The interested thing is that life happened and we weren't able to fit that practitioner into our schedule.  Emma made these gains without adding anything new to her routine.  Maybe it was all her hard work over the last few years that came together to give her better control.  Maybe it is related to her getting a bit older.  Maybe it is related to her new wheelchair.  The truth is I'm not sure why she made these gains and I'm beyond thrilled about the remarkable improvements she has made.

Had we added that practitioner to our routine I would have attributed the changes to that person and therapy.  I'm actually quite glad that life happened and we weren't able to match our schedules for a block of therapy because if that didn't happen I would never have known that Emma would make these changes without the extra intervention.

Living with ambiguity is one constant on this journey through life.  While I'm still not great at it, I'm getting better at it everyday.

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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at

Friday, May 11, 2012

The gift of forgiveness

On Sunday I will celebrate Mother's Day.  About 3 and a half years ago I was made a mommy through adoption.  Our son is such a joy and blessing to us.  When I held his chubby little 18 month old body in my arms I was so thrilled. 

He wasn't.  My son had been tragically abused by the woman who had given birth to him.  He was born drug addicted and has Shaken Baby Syndrome.  That is just the physical part.  He was terrified of women.  When he came to our home he clung to my husband like a life preserver.  He wouldn't come near me.  If my voice got to loud he shrunk and cowered.  It was a tough time for us. 

What was harder for me was my anger against his bio mom.  I couldn't understand how you could do that to a child.  I wanted to hunt her down.  I had fantasies about how I would yell at her and how she would wither away under my wrath.  I had a whole script, trust me.  I had visions of shaking her as well. 

But then I had time to calm down.  I had time to think.  I learned about her sad history.  A life in foster care, no real family, bad choice after bad choice.  Don't get me wrong, I am not excusing what she has done, but I started to see that she had no one and no hope.  So I stopped being mad. 

Fast forward to this coming Mother's Day.  My son and I have come a long way.  He is now louder than me.  I get hugs and snuggles on a regular basis.  My son is not as nervous around strange women.  He will always have the scars and physical issues but they have made him a stronger and braver person.

So now I am ready to give a gift to his biological mother.  I am forgiving her.  I forgive her for damage she has done, for her bad choices, for not being a good parent.  I am moving on with the knowledge that I can't change the past, but I can change the future. 

Happy Mother's Day. 
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Amy Fields is an adoptive parent and is in the process of trying to adopt another special needs child.  You can read her blog Many Kinds of Families at

Thank You for “Like”-ing Me

I resisted Facebook for so long. Then, about 3 years ago, I joined it and quit after about a month because I couldn’t stand the notion of everybody I knew in my business.  Then, I moved away from all my family and friends and my son got an autism diagnosis, and I got really, really lonely.  So, I joined FB again a few months ago.

Now, I don’t use it very much, but it is a place for me to connect my life with just about everyone I ever knew.  It’s also a place where I can share my articles, post pics of what my kids are up to, share exciting updates, or just say to my friends and family: Help…autism is kicking my butt!  Give me some love and encouragement.

And that’s just what they do. 

Here are two of my recent FB status updates:

Jamie Pacton: 
Was at the dentist a few days ago and the hygienist was asking all sorts of complicated questions requiring detailed answers from me. As I was getting my teeth drilled at the time, all I could do was grunt unintelligibly.

 It was so frustrating, and then I realized that this is what Liam must feel like all the time. His brain knows what he wants to say, but he literally cannot make the words come out.

Imagine this being the case for every need, desire, happiness, and moment of frustration, fear.... no wonder he screams! I'd scream too! 

Reminds me of an old cirque du solieil shirt I permanently " borrowed" 
It said "If you have no legs, run. If you have no voice, scream. If you have no hope, invent..."

·       # of Likes: 10. 

Thank you friends and family.


Then, I got that same sentiment tattooed on my arm last weekend and loads of people “Liked” that.

Thank you friends and family.


Yesterday was a rough day. So, I posted this:

Jamie Pacton
Is just having one of those autism mom days where: "really, why my boy, Why?" keeps pounding through her's not the biting, or the screams, or the piles of poop that I catch in my hands, or the introduction of mild aversives to stop problem's just that he has to work so much harder... and it's just so gd'mn him, to all the other kids like him...and when I think before the all those other signs between 12 and 36 months...oh, that's dangerous, dangerous, dangerous. And I know, I know it's a pity party, and I have to press on, keep my chin up and all that, but some days it still boggles my mind. All of it. Autism sucks.

·      # of Likes and comments: 6 and counting. 

Thank you friends and family.


Thank you for listening. For “Like" ing—which I think in this case is really just a sneaky FB-way of saying: “Yep, we hear you and we are here for you. Much love.”

And, so, I guess I’ve done a full 180 on FB. I think it’s a great way for those of us with special needs kids to talk in short bursts about our lives. It’s a way to speak out to those we know and ask for just a little boost when the going gets rough. 

 And then there’s this comment, which sums it all: "You are an awesome Mama, Jamie. Hugs."

Short, sweet, from a friend I haven't seen in a really long time. But, exactly what I needed to hear last night.

Thank you friends and family.

(I like you too!)

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Jamie is a writer, professor and mom to two busy boys. She writes a column for the Autism and Asperger Digest and her work has appeared in various other magazines. Visit her at to learn more or email her at

Thursday, May 10, 2012

When things don't go as planned.

I'm a big planner. Always have been. I like to know what I'm doing, when I'm doing it and what comes before and after. I drive my husband crazy on 'lazy' Sundays wanting to know when he'll mow, what we're doing after I go to the grocery store, even scheduling in rest time. My iPhone calendar is my guide on any given day, telling me what to expect and where to go. Planning is a huge part of me. 

In our day to day life with autism, it's both a blessing and a curse. 

My son is like me. He likes routines. He enjoys knowing what's coming, what's next, what we're doing next week. Luckily he doesn't have to have the routine down pat - also like me, he's okay with being 'free' with no plans, but it's obvious we're both more comfortable with our schedule set. Even my daughter (who is typical) is like us. 

So my planning comes in handy many times. 

However, it's not always fun for me when my planning goes wrong. When something doesn't happen when it's supposed to, or the way it's supposed to. Or doesn't happen at all. I tend to get a little antsy and irritated that my predetermined plans didn't pan out exactly like I had them set up to. 

And that's the story of autism. Milestones? We were at a standstill until Graham turned 3. Then all of a sudden he went from a screaming, hysterical child with developmental levels ranging from 3 months to 1.5 years to being able to recognize all letters and actually using a few words. You would never describe his development as 'consistent'. Quite the opposite. What I wanted and planned to get therapy-wise wasn't always what was given to Graham. Outings would work one day, then for no apparent reason to us they would be a disaster the next time. 

Two weeks ago I was thrown for a loop when Graham's team recommended he be retained in Kindergarten next year. That wasn't part of the plan. He was supposed to be two years behind his sister in school. He's supposed to be in first grade next year. 

After the dust settled, I realized his team is right. He is so close to being able to do this on his own - one more year would help him so much. His team is better than anyone could ever hope for - they are amazing. They would never recommend anything for any other reason than for Graham's best interest. So I agreed. Set the plan up in my head.

Then two days ago, we had an IEP meeting. The principal came in and made it clear she wasn't in favor of retention, and it appears our team will be at odds with her and it could go either way. And we won't know until June what her decision is. 

Planning is impossible. 

In yet another way, autism is teaching me. It's impossible to plan everything. Things on this road don't go the way they're planned. I need to give up trying to plan how things will be and work with what I have now. 

But I'm still not giving up my trusty calendar. 

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Katie is a parent and advocate (and a newly accepted Graduate student in Special Education!) for her son with autism. She blogs regularly at Okay, Who Turned Out the Lights?.

Wednesday, May 9, 2012

You Might Need to Remind Me of This Later

My life would be a lot easier if my kids attended the same school.

Just imagine: one drop off, one pick up, one set of vacations... How wonderful to get to know the teachers better, too. We’d have only one set of volunteer hours to complete, and don’t get me started about how much I’d like to reduce the number of asks for contributions.

But as a parent and an educator, I understand there is no one-size-fits-all school. My children attend elementary school about two miles apart, partially because my daughter won the lottery for a wonderful charter school and my son did not, but also because their needs are miles apart.

Peaches, NT and a diva, needs a social circle. She craves attention, engagement, and drama. At her school, she will have the opportunity to loop with her teacher, and we are glad for that consistency.

Rooster, who has autism, needs specific support systems. He needs a great deal of help navigating the social scene, to the point he sometimes needs protection. At his school, he gets time in a resource room to have individualized attention, and we count our blessings he also receives speech and OT time.

At some point, Peaches might be able to pull her brother into her school as a sibling. We will definitely be torn if that happens and we find ourselves with the luxury of choice. So I’m writing this post to remind myself not to just push the easy button for myself. I am writing to remind myself that fair means giving each child what that child needs. I am writing to remind myself that my kids’ education is not about me, it’s about preparing them for their own lives. If that time comes and Peaches’ school has more to offer the Rooster, then that will tell me it’s the right decision, but otherwise I want this post to keep me honest, crazy commutes or not.

There are a lot of things that would make my life easier, but that doesn’t mean I should do them all. When I chose these little people I chose to try, learn, love, and be happy. It isn’t always easy, but it’s always worth it. 

If I need to hear this later, please remind me. 

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Rooster's Mom is a parent, educator, wife, mom, and writer. She blogs at


I've been thinking about this quote a lot.

Times have been tough for us lately. The Kid's school hasn't been especially supportive of his needs in general lately, culminating in us missing the big sixth grade music performance because I had no idea it was happening. I think they'd been giving the kids instructions verbally to go home and tell their parents, not thinking that some kids don't have the ability to relay messages like that. I had no idea it was happening. His teacher this year has been the meanest lady ever. I don't even want to go in to it, but let's just say my son's behaviors have increased this year by a factor of three and they are the direct result of being humiliated and stressed by an overly strict and rigid teacher.

We are moving to a new city this summer and we've been visiting schools in an attempt to make an educated decision on the neighborhood we choose. My first meeting with one school began with the teacher sitting down and saying that she would not be able to enact my son's IEP and that they'd just prefer to rewrite it off the bat. She might be right, but her tone and her dismissal of all of the hard work and hard won wisdom that is in that document today was disheartening. When I talk to these prospective schools the vibe I get from all of them is, "how much will we have to do for THIS kid, ugh."

I'm feeling very at odds with educators this week, which just so happens to be Teacher Appreciation week. Teachers have been breaking my heart right and left lately, so I'm hardly feeling like appreciating them for the jobs that do. I mean, they get a paycheck to do what they do. And they are mean to my kid. Let's get them flowers?

Ugh I hate that I wrote that. I like teachers, I couldn't do their jobs. I think they deserve to be recognized for jobs well done. But I'm finding it really hard to go out of my way to give them kudos when all of the teachers we're in contact with this year seem to be going out of their way to make our lives miserable and hard.

In short, I'm feeling negative. I'm feeling spite and anger. Sadness, really, is what I'm feeling. I'm sad that my son is not enjoying his school years like I did. I'm sad that I don't feel included in our current school community. I'm sad that my son has had to encounter a trusted teacher who appears to not like him. I'm sad that not one of the schools in our new area is giving me a good feeling that things are going to get better.

Those are the seeds I'm planting right now, even though I really wish I wasn't. How do you turn this around? How do I engender compassion and love for people that I feel are giving my son a tougher row to hoe than is necessary? I want to be zen, I want to be positive. I normally am.

I normally have full awareness that I can't control the reactions of others, only my own. But how long do you live with negative reactions to you and your son and your life before you start to internalize these things? Or maybe, how can I live through these emotions, own them and let them be what they are, but just somehow manage to not plant them in my heart that is like a garden? Maybe that is what it is. Don't let them take root.

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Molly is a mom, erstwhile blogger, current insurance professional and graduate student living in Colorado. 

Tuesday, May 8, 2012

Not getting lost in it all

We just adopted a 3rd child. She is wonderful and bright and exhausting. To be honest I must say that writing has not been at the top of my priority list in the last 2 months. As today drew near I had decided I was going to write about me, about taking care of me in the midst of all the chaos that is our lives right now but then the day got away from me and there was no time for me. Managing my time with 2 kids home all day ( be cause we are now homeschooling 2 even though this piece says I am not)  is a bit of a challenge that I am slowly learning manage.  So,  as I learn new time management skills I would like to share something I wrote in  the past about self care, it is just as relevant today as when I first wrote it even though I only had 2 kids then!

One of the hardest things about being a parent is making sure that your all of your needs ( physical, emotional, spiritual) are met along with those of all the other members of your family. Often parents put themselves at the bottom of the list because there are just not enough hours in the day to get it all done.
Here is a perfect example, my jeans never got hemmed and my socks don’t match. Now for some folks this may just be a quirky style for me it is a lack of time to meet my needs. I don’t really care about my clothes so this is not a huge issue but for some people it might just be the thing that put them over the edge.

When we first got the boys there were a lot of conversations with other people about what it was like to all of a sudden have 2 very needy kids and little idea of how to actually help them. When people asked how I was coping I used to make comments like ” I drink more wine now”, “I let the dog lick Fudge so I can give him drowsy allergy meds before bed” and ” I look really forward to Mondays because they go back to school on Mondays”. All of those things were true. As that first year progressed and things got harder we realised that we were quickly getting burned out and needed some help. We were coping but some days just barely it seemed and I really did not want to get depressed ( a path I am very familiar with)
We got some help. The boys were still on adoption probation then, so some of the help came from our local agency. We had respite for 3 hours every 10 days or so. It was not tons but it was enough for us to get out together or stay home and get stuff done. It worked. I don’t know that we would of made it through the first year without it.
That support stopped last summer but I am still very aware of my needs and the needs that P and I have to be together without the kids sometimes. So we work really hard to make that time, this is one of the reasons that we do not homeschool even though sometimes I think we should. It is hard to make time to be together and it is hard to carve out time alone but I need it and so we find ways.
Now that we do not have a sitter to watch the boys and only a few friends who can handle them we have to be a little creative in our time management. Here are some of the things that we do to make sure that I get some time alone and that P and I get some time together.
- Our boys are in bed by 8:30pm and they stay there until 7:30am, this is not up for negotiation. Children need lots of sleep and parents need time to talk and decompress. You are in bed and that is where you will stay.
- P gets up with the boys on Saturday mornings so I can have one morning where I do not have to worry about breakfast and such. Then they watch cartoons/movies together.
- Sometimes P and I meet and have lunch out while the boys are at school.
- When I go into the city for therapy I make sure that I also make plans to have lunch with a friend and I enjoy that day just for me. It happens about every 3 weeks and if it is the summer I make P book time off or I pawn the boys off on a unsuspecting friend.
- P and I arrange to do things on our own that interest us personally or professionally and we give each other a lot of notice so that the other person can be home with the kids. Sometimes this fails because P is a therapist and thus has client emergencies but it usually works.
- I make time for things that make me feel good like a long bubble bath, reading or writing. These things usually happen when the boys are in bed or early in the morning. There is time but it has to be carved out, it has to exist for my sanity. I make this time and ignore the housework.
- I go to bed at 10 unless there is reason that we are all up late. I need to have enough sleep. I am useless if I tired and grouchy.
- I get up 30 minutes before everyone else so that I can have a cup of coffee and read blogs before the kids get up.
- I work in the garden, sometimes I make my kids help. It feeds my soul and the food feeds us too.
- I make sure I eat. I don’t always make the best food choices ( I love fries) but I do make sure that I eat a fairly balanced diet because hunger leads to grumpy Mama.
All of that being said you must find time for you so that you can be a great parent. You can not be a great parent if you are tired, hungry or emotionally drained. You can not be a great parent if you always feel as though your children and dancing on your last nerve. You can not be a great parent if you work yourself to an early grave. You need to take care of you because then you can be a better parent to your children who really do need a lot from you each and every day.
Yes this means that everything does not get done. My house is usually messy, there is always laundry to put away and there are always dishes on the counter but I think I would rather have a messy house and be happy than a clean house and be exhausted.

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J is a mom to 3 kids who came in her front door walking, talking and toilet trained just as she had always wanted. Older child adoption from foster care can be both inspiring and infuriating but it is worth every infuriating moment, you can read all about it at Stellar Parenting 101