Monthly Archives: January 2014

A funny thing

A funny thing happened on the way to becoming Boo’s mom. I knew Boo was not going to be the same from Abby right from the start. In a way that does not diminish my love and adoration for her sister, but in a way that makes me a better mom to both.  However her being Boo turned me into mom that celebrates moments that shouldn’t happen.
Those who know this story are probably bored by now, but with Boo I am reminded every moment is precious. Even when she shits down my leg I can think “EW” and “wow she said poop” at the exact same moment. The thought that follows close after is thank the Good Lord and all that is Holy I had pants on. 

There have been times when I have been in shorts.

When Boo runs to her sister to get her off the bus I think this is the child who Early Intervention told me might never walk.  I rejoice because I can think of not one other person who gets to see their children race towards one another every afternoon at 4pm. Trust me on this, I never raced to get my brother off the bus.

When Boo says “mum” over and over again I never get tired of hearing her voice. I may wish for an indoor voice at 6am but I never shut the monitor off. I lay in bed and think wow she is up to her 20th word in a row. This is the child I worried would never speak and had her entire family learning sign language to help her communicate.

When I walk into the kitchen and find that Boo has relocated the furniture, managed to climb up the chair and is laughing like a loon I think to myself this is the girl they say has poor motor planning skills.

A funny thing happened on the way to becoming a mom…I became a mom of a child with special needs. Not only special but unique. One who five years later science still does not have a true diagnosis, other than unknown genetic syndrome. With a lot of other issues.

A funny thing happened on the way to becoming a mom with a child who has special needs I discovered what really matters in life.


Finish the Sentence Friday

I don’t know if I’m ready….

I don’t know if I am ready for this post. To write it. To understand it. To mean it. To be comfortable with myself to say here I am folks and it may not be pretty. You have been warned. This post is long and rambling but while writing it I had an epiphany.

Regular readers know that Boo has an undiagnosed genetic disorder, probably neurological in nature. A month ago she had to undergo neurological-psychological testing to have a better excuse than we don’t know what the freak is wrong with your daughter to satisfy the State and Insurance Gods.

Last week we received the results of the neuro-psych testing. Most of it was unsurprising. Boo has an intellectual disability (no kidding), she has a sensory processing disorder (um, yes but did you see her video at the beach?), delayed language and….autism.

I’ll get back to that last one in a moment. For the Intellectual Disability we were thankful that her skills are scattered, so she shows not only growth but potential. The majority of her skills is in the “very low” (disabled) IQ but she did have a smattering of “low” IQ in some areas. 

They asked me if I believed the testing and I said I did with the caveat that had Boo’s known therapists had performed the tests she would have had stronger results. I do not believe the Psychologist put the tests in a context where Boo understood what was being asked of her. But they are standardized tests and the tests have to be done the same way. Let’s just agree to disagree on that one. Right, Boo’s therapists who are reading this rant?

I asked why, when for all this time we were repeatedly told our daughter did not have autism this decision was made. I am not adverse to the label, but I want the reasoning. According to the “standardized” testing Boo qualifies as Autistic due to her hand flapping (although this is only with excitement and not a stim), her sensory issues, her toe-walking and her social skills. Plus some other fancy words but I had kind of stopped listening.

Um, what? You had me until social skills. I agree with everything above when except social. I did not think I could have a child more social than Abby. Boo loves people. She loves to please, she loves to be around her friends. 

What I learned is that social interest/motivation is different from social ability. The Psychologist also expressed worry that Boo will interact only on her own agenda. But when prompted to look at the Psychologist she wouldn’t. Again I said, had her therapists she sees everyday had conducted the testing I believe the results would have been different.

But they are standardized tests and the tests have to be done the same way. Yeah, I heard you the first time.

I asked if where Boo is developmentally may have some impact on her social “ability”. Unfortunately as delayed as Boo is, developmentally her social development is even more hindered. Had the delays been closer together they would not have been so concerned.

But here is the kicker…when asked how this changes what we do for Boo. Now that she is autistic what therapies do we add, what do we take away, do we try play therapy, try yoga again, anything that I haven’t thought of….I was told:

“Keep doing whatever you are doing”.

Yeah, thanks for that.

I’m not upset by the autism label. Okay I was at first. I was worried that I am in denial. However in truth, my fear of the label is that doctors, teachers and therapists will stop looking to see what is at the root of Boo’s issues. I called her neurologist, whom I not only adore but respect and trust. 

Am I in denial?, I asked. Has Boo had autism all along and I just didn’t want to know?

No, she replied. With the standardized testing Boo qualifies for the autism diagnosis. We have never tested her before with ADOS due to her intellectual disability. Once you get down to the testing, where her strengths and weakness are clearly shown you get a better picture.  But (and this is an important but she stressed) autism is not only what is wrong with Boo. What is wrong with Boo is she has an unknown genetic disorder, an intellectual disability and other medical concerns that now include autism. 

Our Boo, she said, is something unknown and also all these things we can name. Our goal now is to make sure no one ever stops looking at the whole child.  

I struggled with this post, for some time. I struggled with understanding what autism means to me. I have plenty of friends whose children have autism. I know it doesn’t make them less. I know that they are just like Boo, unique and lovely and precious. But after all this time this was one diagnosis I never considered. Or been told to consider by her team.

I just thought Boo had an intellectual delay. I think, honestly that was easier to deal with because delay just meant she hadn’t caught up yet. Flights are delayed all the time but eventually you get to your destination. 

Epiphany time! There was a hope that was buried deep in my heart that I never knew was lingering: that she would, someday, catch up and plateau. Did I think she would be a Harvard grad? Not so much. But then I am not too impressed with Harvard grads lately. 

You don’t recover from autism. Boo will always be intellectually disabled. The hope I didn’t know existed kind of broke my heart for a day or two. I struggled with this added diagnosis and the realization Boo may never catch up. My love never wavered that she will always be my Boo. That we will always do what we have been doing and continue to defy those who say she will not do….

It wasn’t until someone asked me if Boo was “a little autistic” and I could realize with a smile, that being a little autistic was like being a little pregnant.

Yes, Boo is autistic but she is also something so much more”, I replied.

This one is for Jen Kehl

My bloggy-friend Jen has had a pretty bad month or two. So Jen this tape is for you.

I hate when you know some one is down and looking for answers. But I applaud them for looking and to not give up knowing the answer will be there as long as you take a moment to listen.

I’m sorry but you cannot listen to Bon Jovi and not feel a twinge. Yes, he is just here for eye candy.

I’m including this next song because I believe while it may be down pouring like hell on your house right now you know at some day there will be no more cloudy days.

Sir Elton says it best, my friend, how wonderful life is while you are in the world. 

Last but not least a little Jimmy. Cause you cannot be down when Jimmy is around.

Jen I hope February treats you better than December and January!!!  

Girl power?

It is no wonder why girls are confused. Sorry, this is a post for girls because not having sons I believe boys are just gross. They always remain dirty, covered in something not recognizable and they always like sports. Kidding! Let’s face it though, boys and girls are different. How their role in society changes and evolves is important. From a woman’s point of view (because I’m a woman) our dreams and goals change more often than our male counterparts.

And I blame Disney.

Okay, not really. Here is what I realized the other morning. As the mother of young girls I tell them they can be anything they can dream. But they see the house dynamics. David does the “simple machine” and I do the laundry. I am sure other households are similar. What they don’t see at this young age is teamwork that has been established by playing to our individual strengths (FYI the circular saw is not one of mine).

The other morning Boo was watching her newest obsession favorite program on her IPAD, Sofia the First. I love this show. First it has Tim Gunn so what’s not to love? But more the underlying theme is staying true to yourself. To make your friends get along and make allowances for one another. That you can be whatever you want to be, you just have to work hard to attain your goal. In this particular episode Sofia wanted to be on the princes’ horse team. She was being told that princes did X and princesses did Y.

Sofia would have none of it, sang a cute song and trained to be on the team. She can do anything, no matter who wants to count her out.

In the exact same room, watching Disney but instead of watching Disney Jr, the tween channel, Abby was watching Austin & Allie. This show has been about teams as well, that the boy and the girl work together to have careers in music. For the lucky uninitiated the boy is the performer and the girl writes the songs that make him the star.

Behind every successful man is the woman, right? But they are equal partners working with their strength to become a success. Except in THIS episode Abby happened to be watching, the female lead was forgoing her own career to follow the boy on the tour.

First of all, where the heck are the parents that would let all these teens just get on a bus unsupervised for a tour? But more importantly, why is the song writer giving up her chance at of her own career to follow the boy?

It probably wouldn’t have hit me if not for Stephanie’s post about song lyrics. That without even realizing it we are sending our daughters a message that they are less-than. They need more (man, job, child, insert your goal for your child here).

That the two Disney shows were on simultaneously in my house and were giving two completely different messages was kind of kismet. That we were telling our preschooler she can do anything that a boy can do. Yet we are telling our tween that she needs to put the boy’s needs before her own or worse that his dream was more important.

After all, Austin wasn’t canceling his tour to stay and write songs with Allie. He (and their friends) encouraged her to come along on tour and forget that she had dreams too. The upside was that (thanks to Stephanie’s post) I was prompted to have a discussion with Abby. The downside was that after all this time we still have to have the discussion that men are your partners and not your king.

At least we are having the discussion….

Different choices

When Abby was young we research schools, private and public. We started in Montessori and would have kept her there if there was an option of a larger school. When we had Boo that changed.

We could no longer afford private school. Thankfully that is the only thing we had to compromise with having Boo. But still, the choice to move to public school for both girls was one we thought long and hard about.

Long enough to contemplate giving up wine, vacations and chocolate.

Thankfully we live in an awesome town. One that has a great educational program, both for the typical and the special. Abby had a hard transition to the formal education program, rather than the more nurturing Montessori. It took time for her to find her groove, but she did. 

I haven’t really thought of our choice for public school. Boo has thrived, simply thrived in her program. Unlike other families we have fallen into a simply awesome program. And then it happened.

I was at the grocery store and ran into a mother of a child who was a classmate of Boo’s last year. Her child had moved on to kindergarten. I asked, innocently enough, how E was enjoying kindergarten. For some reason I assumed that she was in the same public school system. Until the mom informed me they had gone the private school route. 

“You have to have Boo go there for kindergarten”, she innocently said.

In my head I am thinking do you remember Boo? She is right here sitting in the shopping cart. Unlike other 5 year-olds who no longer fit in the cart. Boo is being Boo. Cute, adorable Boo. But not anywhere on par with her own child.

I simply reply that we love the program she is currently enrolled. In my mind I am thinking that we won’t know until late Spring if Boo will be ready for kindergarten or if she will spend a 4th year in pre-K. Which, if needed, I am generally fine with. Until a mother innocently assumes that Boo is “normal” and will be following the normal trajectory of education.

This mother didn’t mean to make me catch my breath. It is just one of those moments when I hit the wall. The wall of knowing that with Boo I have different decisions to make. Ones that will impact Abby more than Boo. Ones where Boo takes precedent of Abby. Our family. Knowing that where we live matters. That we cannot move or change careers or schools at a whim. Knowing that to give Boo the best life possible we all make sacrifices.

Even Abby. Although she doesn’t know it. Abby is in public school because the cost of a special needs child is quadruple (made up figure) what a typical child costs. That we need a larger car to fit Boo’s chair. That we have to pay for extra health insurance . That I have to limit my hours at a well-paying job to be there for Boo’s appointments. Limiting my paycheck and David’s as well. We haven’t saved as we had before Boo. Our savings account has not grown as we expected. This Christmas was a perfect illustration of our new situation. That we didn’t spoil our loved ones as in years past.

We are so, so, so, very lucky to live in a town with a great public school system. One that nurtures both girls. That allows both girls to not only achieve their potential but surpass it. I don’t begrudge Boo. David doesn’t even consider it. Abby, if she knew, would be okay with it.

And I am too. 

Until an innocent bystander assumes that Boo could just transition to a typical classroom.

I am not a DIY-selfer

Teachers are my heroes. They work for comparatively little salary for the amount of time, effort and dedication they show to their classes. They are hugged, kissed, loved and (in Boo’s case the other day) thrown up on by their students. They handle almost every situation with grace and some bleach.

However after four years of being involved in the education process I have come to a conclusion about teachers and homework.

It isn’t homework at all but revenge. Revenge, I tell you, for having to deal with our terrors little darlings all day. Like, Boo throwing up on them or Abby debating with her teacher that she really doesn’t have time for homework because she has riding lessons tonight.

After all, unless you home school (and then you are my hero) most of us send our children to school. Yes we say we need to work or it is for socialization or insert your excuse here.But the reality is that most of us I would be completely inept at educating my own children. Thankfully some brilliant mind invented the public school system. But then the teachers got smart. If we were going to send our delinquents into to their classroom they were going to send home “presents” to their parents.

Case point number one: the Every Day Math program. Whatever genius invented this “new” math for our children must have been really ticked off at either their students or their parents. There really isn’t any other valid understanding that you do this:

Instead of the way that has worked for my 40+ years:

But once you believe that the teacher’s appetite for revenge has been satisfied the next vestige of torture is delivered in the form of “special” projects. And by special I don’t mean a bracelet from Tiffany’s or an adaptive program for Boo. In previous years Abby did her special projects in class and we only had to go view them. But no, these 4th grade projects require the parent (aka MOM) to do some type of DIY project at home. Then this parent must help their spawn child to write a paper describing their process, their idea and whatever else is in the rubric.

My friend’s children had to make an earthquake house. I chuckled and asked don’t you know we live in New England? Unless your child was going to be an architect and you were preparing them for scholarship time this just seemed like a diorama gone mean. Then I got Abby’s notification and wished we had a diorama.

My child’s class must have really ticked off their 4thgrade teachers. We have to make a simple machine. Hello, I can barely put gas in my car! You want me Abby to make a machine?  With levers and inclined planes or a pulley (when I first read the types of tools you could use I thought airplane not incline). I don’t trust the kid with a knife and you want me to give her a screw and a lever and say, “make it so”?

My daughter who loves to craft is thinking bedazzle, balloon and magnets. Then she saw the paper and said an incline plane seemed cool (I think she read “air” plane too).  Abby did not appreciate my idea that SHE should invent a way to change Boo’s diaper so I don’t have to. Her ideas range from making a car, to using the balloon to deliver an object to I don’t honestly know what the heck she was trying to describe to me. 
All I know is that the teacher, whom we adore, won this round.

One time I saw this biggest jerk.

One time I saw this biggest jerk. She was a teenager. She thought she knew every freaking thing. She made her mom miserable, caused her needless worry. She wouldn’t understand until she was much older that her parents weren’t too terrible after all. It took quite some time for me to see the biggest jerk. It took having kids of her own to realize that the biggest jerk in the 1980’s was me.

So mom, I apologize for being the biggest jerk. 

I hope the granddaughters are enough revenge, I mean repayment. This is how I finished the sentence, I once saw the biggest…..

Finish the Sentence Friday

Taking pride

About a year ago I asked you what is something your child is REALLY good at? I mean something they can do that is just spectacular. They don’t have to be a broadway star, but something they excel at. Like climbing the neighbor’s tree faster than you can hit the snooze button on a Sunday morning.

Boo, for example, has had a great year full of accomplishments. Things that you will never find in a parenting manual, an IEP, growth chart or maybe put on your families Christmas letter. Here is a list of things that Boo has not only accomplished in 2013 but become really good at:

Boo learned to turn off and on lights. Of course she seems to have mastered the skill of turning the light on that you do not need and plunging you into darkness when you are taking a shower and shaving your legs.

Boo continued her mastery of taking off her shoes and throwing them out of vehicles. She managed to throw her shoe from the back seat, over the headrest and out the front window. 

Boo jumped. Over a line. Thankfully she hasn’t managed to jump off the top of the counters yet. Although she did jump into a pool while on vacation. Thankfully M was there to catch her. 

Boo hosts dance parties in the kitchen. The other night while doing dishes she told me “dance” and gave me my IPHONE.  Abby videoed it with her IPOD and is currently blackmailing me to get out of cleaning her room.

Boo found her voice. We can now understand more of what she is trying to tell us at the top of her lungs. I blame her SPT for her outdoor voice. SPT has informed me that she has met Abby and in now way is she taking full blame for Boo’s volume. Or the fact she said “fuck” clear as day in therapy. I’m not taking the blame for that either. Although the grandparents had been visiting….

Tell me, what is one thing. Just one thing that your child does that makes your heart swell with pride? 

Nature vs. Nurture

When Abby went through her princess faze it made sense. She loved princesses and we indulged her. Grandparents bought Princess sheets, coats, dolls, play sets. We went to Disney and got their autographs. Today, at 10, Abby will still watch a Disney movie with awe.

Boo wasn’t as exposed. Boo for the most part watches her IPAD and hangs out. She doesn’t seem to attracted to anything other than music. Give her a toy and it will gather dust until I donate it to another child. 

Then Princess Sofia happened. Quite unintentionally (because nothing else was on I am sure) Abby watched the program.

Boo fell in love. 

I wasn’t too sure how much until we went to a birthday party and gave her friend a Princess Sofia. Boo tried to steal it back (hello, typical child!). For her birthday we gave her a Princess Sofia doll. Typical Boo, she wanted it kept in the box. Abby wouldn’t put up with that–dolls are to be played with! Boo carried the doll around for a minute and then it ended up under the table. She went back to her IPAD. 

Until bedtime, when FIA had to come to bed with her. (hello, typical child!) Over the past month or so Fia has been brought in and out of bed, never played with. For Christmas we had no idea what to get Boo and she needed a backpack so viola! When she returned to school she excitedly showed her backpack to everyone. Fia backpack she yelled. 

Yesterday Boo discovered that she could watch Sofia the First on her IPAD. Which let me tell you is a nice break from the Austin & Allie Christmas special and I no longer hear her yell HOOKER. 

She sees the Disney sign and yells PRINCESS (new word!).  I thought with Boo I would skip the if it was pink, plastic and princess it would be in my house. 

Good thing I never got rid of all Abby’s things I had moved down into the basement!

Play dates

Here is the problem with play dates. The kids talk. To one another. They find out how the other child’s mom is so much better than the one they came with.

We were invited to a friends house for brunch last weekend. It was a great time. The food was plentiful, the conversation plentiful and Abby was beyond excited to have a friend her age to play in the snow.

It wasn’t until the ride home that I realized the day did not go as smoothly as I thought. Abby: Mom do you know S gets $3 a WEEK.
Me: Really, she gets paid to just be a kid?
Abby: No she has to do chores but they are super easy.

Me: (Silence)
Abby: I need an allowance.

David: Great, start mowing the lawn.

Honestly, the girl should do chores. We tried the chore chart a few years ago. But it always came back to the question: should she get paid for doing things around the house? And what exactly should a 10 year old be responsible for? Damn where is that parenting manual! Chores to me should be more than emptying her backpack. After all, I explained to Abby that I don’t get paid for doing the dishes, so why should she get paid for cleaning her room?

Abby: Because S does.

Great, peer pressure to do chores. Of course it could be worse, I know. 

Damn play date is now going to cost me $3 a week.