Category Archives: autism

Why I’m not mad at Toni Braxton

14 Replies

Toni Braxton is facing a lot of criticism over her memoir, Unbreak My Heart. According to E-online, Ms. Braxton writes that she believed her son’s autism was “God’s payback” for having an abortion.  While many are understandably upset about Ms. Braxton’s provoking statement, I think what is being missed in the outcry is she states in her book she BELIEVED. With a “D“. 

What parent of a child with special needs has not had that thought? That our child’s disability was because something we did? That you might be being punished for something? That you did something wrong? Did you have a cocktail before you knew you were pregnant? Did you scuba dive? Were you a bad person? You and your spouse fought. You cried when you found out you were pregnant.
When Boo was first in the NICU I wracked my brain trying to come up with some reason why. Every time some new worry arises with her I wonder why she suffers. I still am searching to the ends of Google to find an answer. I have blamed myself for not wanting a second child. I blamed myself for knowing that I probably had a glass (or two) of wine before I knew I pregnant. I blamed David, thinking surely something he must have come into contact with at work did this. This thing that no one could explain to us.

If not one parent has ever had that thought, I call bullshit. Yup, I just swore at you. Because it is impossible for me to believe that when told your child had XQZ you handed out cigars and said how proud you were that your child may have to struggle more than others. That not once did you second guess yourself, your doctor, your medical history or your God.  It is easy to blame God for a lot of things. He very rarely comes to the witness stand. He is kind of busy.
Photo Credit: Finding Ninee


He is blamed for war, for famine, why not question him for your child’s disability or illness? Or your own. I imagine there are many cancer warriors who wonder why they got sick. What did they do or not do?


In Ms. Braxton’s memoir she is recounting her feelings. What she went through as a parent of a newly diagnosed child. I do not agree with everything she states in her book. But am I outraged that she once thought God was punishing her for a decision she made? That she went there and bared her feelings? We might write in our diary, our blog, our book about our feelings and fears. We cry to our friends, our partners and our moms. We go through a period of grief of the child that might have been. That is natural. Am I sometimes fearful that one day Abby or Bridget might read a post I have written and be hurt by it? Of course! But I am also aware that my love for them will overshadow any fears or thoughts I have had, they will read the whole post/entry and not take a line or two out of context.
Did Toni Braxton set autism awareness back a decade with her memoir? Nope. Not buying it. Only if the crazies out there start using it as an anti-abortion statement. I can see it now, don’t have an abortion your next child will be punished. Let’s face it, there are idiots out there who use whatever sound bite possible to defend their position. Even if there is a thousand reams of information to back up the opposite position. Of course I wish she spent more time talking about how wonderful her son is, how proud she is, how she realizes that autism (or any disability) isn’t a punishment. That life with a child with special needs is a life-altering journey. 

But it’s not my memoir. 

Most parents would never, ever, tell her child that she wondered why her child was born with a disability. We tell them that they were born perfect. There is nothing “wrong” with them. We lobby for inclusion. We shout from the rooftops our advocacy. 

We believe deep in our hearts that our child is perfect, beautiful, amazing and we are astounded by their will.

But at one moment in time, each and every one of us wondered why “it” happened. Then our hearts grew ten times too large and we stopped wondering and began living. 

At least I’m honest enough to admit it.



Special thanks and a shout out to my friend Kristi at Finding Ninee who drew God on the Witness Stand with three hours notice, never asking why I needed it! And to Tia who pre-read this post and encouraged me to post it knowing others may disagree.


Throw Back Thursday-Turning Right

3 Replies

Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

Throw back Thursday-Blog style



(Originally posted 15-JUL-2012)

Although Boo is not autistic, she exhibits a lot of similar behavior. This weekend I read an article in Outside magazine titled “Little Boy Lost” by Dan King (http://www.outsideonline.com/outdoor-adventure/outdoor-skills/survival/Catch-Me-If-You-Can-20120801.html?page=all) . It is about an 8YO autistic boy that was lost for five days in the forest. In the article they state that it is estimated that “40 percent of children with autism will go missing at some point in their lives” (page 75 section 4 of the article). 

It happened to Boo this week.  She not only escaped from her classroom, she wandered quite far from the class into the hallways of the school.

For a little back-story, when Boo first started this program I repeatedly warned them that she needed a one-to-one dedicated aide. I also warned them of her tendency to wander. She would not be misbehaving, just something may catch her attention and the next thing you know she is down the street. 


Fast-forward six-months and Boo’s teacher not only requests an assigned aide, an updated IEP and a transition to a dedicated special needs class for half the day. This new program began this summer. Again, we expressed to the teachers & aides of Boo’s tendency to wander. It was agreed that all doors would be shut and that Boo would have a person assigned to her well-being.

Thursday it happened. One teacher thought the other was working with Boo, when they notice the door was opened (handicapped, so much easier to open for Boo!) and no Boo to be found. They were unsure how much time had elapsed, quickly got coverage for the other children in the class and went to on a Boo hunt. 


This is when I know that Boo has a guardian angel looking out for her well-being. As this is the summer, the school is not locked to the public and the front doors were wide open. Had Boo taken a left out of the classroom she would have been a short walk to the great outdoors. Had this been during the traditional school year, there would have been students milling around and she might have been tripped or run down by an energetic child.  


But she took a right turn and ended up in the middle of the school. Quite a distance away from her class, but still a right turn. One that led her into the relative safety of the indoors. Thankfully her teachers found her in short-order, thankfully she is fine and this was a lesson learned for all of us. 


Her daddy, rightfully so, went nuclear when I told him. He didn’t understand why I was calm about the incident.


First, I have been waiting for this to happen for six months and was just thankful that it happened in a somewhat controlled manner. Secondly, we are not saints and it has happened to us! In the front yard, blink for a moment and she is gone. Sure the teachers were warned but until it happened they would not believe us. Lastly, I do not want to ever think the teachers cannot tell us something. I want them to know I not only will I not ‘overreact’ I will work with them to figure out a solution that will work in the school and home too.


I wasn’t going to post about what happened on Thursday. But after reading the Outside magazine article, I felt compelled to share the story. Boo was missing for, at most, 10 minutes and I was completely unaware. Because Boo is virtually non-verbal, had her teachers not told me, I would have never known. Had Boo taken a left-turn and been found by a stranger she would not have been able to give them any information. Even scarier, had she taken a left and gone unnoticed she very easily could have run into the busy street. She is so petite, a driver may not have noticed until too late. The what-if scenarios are endless and nightmarish.

If 40% of autistic children ‘elope’ how can they not figure out why? With all the money in medical research, they can figure out how to keep a man happy but not our children safe. 


Personally, I am going to see if they can get a door alarm for Boo’s class. I am going to look into a medical alert bracelet for her to wear with her name and number (the trick will be making her wear it). I may even go the extreme and start labeling the inside of her clothes! 


I would be very thankful for any other ideas. What do you do to make sure your child is safe if they wander?

40% of autistic children go missing. Thank God Boo took a right-turn. 

I Run 4

Leave a reply

I have written before (insert too much!) about the importance of creating a village of support when you have a child with special needs. Heck, even with a typical child a support system should be included with every birth certificate.


I began running in earnest about a year ago. I ran to get away from the stress of just, well, everything. Taking 20-odd minutes to focus on nothing but breathing and trying not to trip in public.  It wasn’t always pretty, but I finally found my rhythm. I managed to avoid eating any more bugs and discovered the joy of tripping running in the woods.


Bailey& I running last fall. Or falling last fall.
Recently a friend asked me to join a group that runs for those who cannot. It is called I Run 4. This is a great non-profit that matches one runner for one buddy.The idea was sparked when the founder, Tim Boyle, began dedicating his daily run to a friend who was physically unable to run. They created such a bond a movement was born.

My friend’s daughter is a buddy. Her runner sends not just the child, but the family encouragement and emotional support to get through days that can be overwhelming. In return, my friend’s daughter provides a smile, unconditional love and gratitude that someone out there care enough to run with her spirit.  She also provides the runner with a reason to get out there and run when it would be easier to hit the snooze button.

Thus, a new village was created for my friend.  

https://youtube.googleapis.com/v/zM56CoucRm4&source=uds


Here’s the thing though, not enough special families know about the program. There are over 3,000 runners looking for their buddy! Buddies are those with physical or mental handicaps. Persons of all ages who are willing to be the inspiration for the runners. 

If you are in need of a village, of some support or you are just looking for a way to inspire someone, please consider signing up your child or adult with special needs to be matched. Follow this link: http://www.whoirun4.com/match-me/ to find out more information.  There is no cost to join, for the runner or the buddy.  

The runners are waiting to be a part of your village. Are you ready to be part of theirs?



The nicest thing some one ever did for me was to be my village and allow me to pay it forward.

And that is how I finished the sentence, the nicest thing some one ever did for me was….

Finish the Sentence Friday


**This post was not paid for/sponsored by IRUN4. I will not be moved up quicker on the buddy list (darn) unless more potential buddies decide to join the program. I did receive permission by IRUN4 to use their links and information to promote their program. 

Mom in the elevator

Leave a reply

Dear Mom in the Elevator,

I’m sorry. I apologize for leaving so quickly. I saw you and your husband in the elevator at Children’s. You were wearing the badge of the NICU. You had hit the elevator for the respite floor. You looked so spent. So wiped. So scared.

As I left with Boo for her cardiology appointment I turned and said, It gets easier.

Then I left.

I’m sorry. I should have said something sooner. I should explained that it gets easier but not better. That today you are worried about your newborn and tomorrow you will be worried about you toddler.

But I swear it gets easier. You will be hit in the gut many times over the next few years decades. Right now, believe it or not, is the easiest time of your life with a sick newborn. You have the support of awesome nurses and physicians who allow you to nap, to eat, to cry and to ask questions. 

Soon, hopefully, you will be discharged. You will be scared. No, you will be terrified. As much as you looked forward to the moment of taking your baby home you are scared to your core. Because at this moment you realize you are parenting without a net. You are taking a child home that just 8 hours earlier was on a cardiac (or other) monitor. The doctors and nurses assure you that they are healthy enough to go home. As much as you (and everyone you know) prayed for this moment in time you are terrified that you are not ready.

But you are. There are just somethings you have to do to make sure you and your child stay whole.

You need to create a village. That friend that says call me, what can I do, I’m here for you. Hold them to it. Call them and say HELP ME I’M SCARED. More scared than you ever imagined. Unless you have been in the NICU you cannot describe the level of terror. They won’t get it, but they will hurt for you. They will be there for you. But only if you let them.

But I get it. I understand the moment you thought your child was going to die. The moment when you realized they would live. The moment you were told they were coming home.

It scared the crap out of me. I mean, like almost threw up I was so scared.

There will be moments in the future when you will worry, when you will cry, when you will say this is not what I signed up for…but they pale in comparison to the moment.

The moment when you go from being a parent in the NICU to a parent without a net.

Here is what you need:

  • Your partner. You are in this together. Remember that and hold them to it.
  • Your best friend. They promised to be there forever. Hold them to it.
  • Your mom. She loves you, no matter what. She might not understand what you are going through, but let her be there.
  • Your pediatrician. If you do not have one that is willing to be answer your call at 2AM find a new one. Their job is to be there for you and your child. Hold them to it.
  • Your friends. Here’s the thing. They want to be there for you. But they don’t know how. They are afraid to call and bother you, they don’t want to burden you, they are ashamed that they complain about their child talking nonstop when yours is nonverbal, they don’t know how they can help. So tell them. Tell them what you need. Be it a pizza delivered, a bathroom cleaned, a shoulder to break on or a text fest where you just spew. But let them be there. Don’t hide what you are going through because then they cannot help. You need them, it’s your job to let them know it.

Lastly, and this is the most important, listen to your inner warrior mom. You know your child better than any doctor, nurse or provider. If they smell funny to you then something is going on. I once had a nurse tell me that mother’s instinct trumps doctors order any day of the week. Remember that. 

When you gave birth to a child with a medical issue and/or special need, you didn’t just become a mom (sorry to tell you). You became a warrior mom. One who advocates, medicates, does therapy, uses Google to the ends of the research and who loves their child beyond all measure.

It does get easier. Not better, but easier. The caveat to being easier is to have your village. Go find them. Embrace them. Lean on them. I should have done it earlier. I am one of the lucky ones. My village found me. 

Dear Mom in the elevator, you are not alone. You are scared. You are terrified. You feel overwhelmed and heartsick. But you are not alone. Create your village. Embrace them. That is what makes the NICU experience bearable. I remember just 5 years ago keeping people away. I missed out on the support I needed. It took years for me to get it. That my village was there waiting to be tapped. Once I understood this journey became easier.

Not better, but easier. 

Don’t make that mistake, Dear Mom In the Elevator. Let your support system be there for you now and forever.

Love,
A parent who has been there and has the t-shirt.

A parent that is there for you, if you need.

A mom who wishes she spoke up sooner. That she said HELP. That she allowed those who love her and her child to help them.


PS–I had a different post almost ready for this Finish This Sentence Friday, Dear Mom…but then the elevator happened.

 Holy crap I’m a cohost and really hope I didn’t screw this up 🙂 Please link up below!

What happens…

6 Replies

What happens when you begin to lose faith? In perspective we haven’t been on this journey long. Five years is nothing when compared to other children’s battles. Having a child undiagnosed with unexplained ailments compared being a parent whose child is fighting a life threatening illness is insignificant in comparison.
I apologize to all who read the Dr. House post and the Poor Me post. I promise I am not just regurgitating, or wallowing. I was just hit, yet again, by the bat that is a doctor who passed the buck.

I feel foolish and selfish for even getting upset. Let alone discussing losing faith. I try to keep this blog upbeat and fresh. I hate wallowing, repeating myself.  But I am struggling. I am second guessing myself. I am wondering if I am the mom who cried wolf.

Why am I upset if not one of the five doctors I have contacted do not think it is significant or alarming that Boo is having swelling in her arms, hands, feet and legs? 

So what do I do when I begin to lose faith? I get pissed. Seriously pissed. In all honesty I also had a healthy cry, a text-fest with Tia and a glass of wine. Maybe two.

But I got pissed and I decided that it’s not okay. I’m okay with Boo being undiagnosed but I am no longer okay with cardiology telling me to call rheumatology who tells me to call the cardiology who tell us to have our Pedi order a test. 

Which she does and then that test is cancelled by radiology who doesn’t think it is necessary.

Because really, why should we investigate why a child is having intermittent swelling in their extremities for no reason? 

So I got pissed. I did some more research (cause I have spare time) and found another specialist to contact. I am making cardiology see her next week and not leaving until he refers us some where. Any where.

I have reached out to two different “Dr. House” type doctors that are not local but I don’t care. I have e-mailed yet another doctor whose blog I read to ask for a recommendation. I found through my own searching of Children’s Hospital a center that deals with disorders of the vascular system. 

I am not giving up. I am not crying wolf. I am not waving the white flag.

Some day. Some how. My child will have a doctor look at her as a whole child and not say call another doctor who will then cancel a test.

Just because her various ailments are not deadly doesn’t make them any less significant. They just make it easy to put into perspective. I know what Boo is experiencing isn’t life threatening. But it is impacting her life. 

And that’s enough for me to get my big girl pants on.

Some people lose faith and curl up in a ball. There is nothing wrong with regrouping. Me? 

I get pissed.

Thank you to everyone who reached out last week. Who gave me ideas, support and were just there being my village. I am using all of the tools you give me to stop wallowing and instead remembering the warrior mom creed:

You will not dismiss my child. She is too important.


Okay, if it’s not our creed it should be.

Decisions not made

Leave a reply

The best decision I ever made was one I never would have, if given the choice. People make choices all the time. Those decisions have unknown consequences and unknown victories.
Had I been told while pregnant that Boo would be admitted to the NICU on her fourth day of life, that we would be told her brain was not developed and she would never walk, talk, jump, love or progress. That five years later she would still be proving to be a medical enigma, I may have made a difficult decision. I would have thought I was making the best choice for myself and my family.

I would have been wrong. So wrong. 

Doctors don’t know everything, testing is not always 100% accurate. The doctors for boo were well-intentioned, but they were wrong. Yes, Boo hasn’t had a tranquil childhood. I have had fears that she wouldn’t survive. Fears that she would never have a life like Abby’s. I worried, lost sleep, became a master at using Google to find remedies, treatments and novel ideas. I became a warrior mom, an activist an optimist.

I broke and continue to break.

Every time I break I think of that Fellow who didn’t believe in her. That did not understand the absolute power of a warrior parent. I remember that moment and am thankful for those broken moments as they make me appreciate how unbroken Boo really is. Being unbroken means there are a lot of decisions to make.

The decision to bring her home from the hospital and not let them define her.

The decision to send her to a daycare that loved her, that transitioned to a school that adores and supports her.

The decision to allow surgery (or not).

The decision to provide intensive therapies when we were told they were too much for her.

The decision to let Boo defy expectations, not once or twice.

There are a lot of decisions I make with Boo. Some large, some small, but all must be thought out, researched and agonized over. Yet there is one decision I never had to make and am so thankful the choice wasn’t offered.

I realize that best decision I ever made was one I didn’t have to make. 




Finish the Sentence Friday

Paging Dr. House!

13 Replies

Recently I took Boo for a follow-up with neurology. The best part of the visit was when Boo hit the ALARM button in the hospital elevator. In a crowded hospital elevator. The day would have to get better, yes? We were only going for a routine follow-up.

Maybe with other children. But nothing with Boo is as easy as it appears.


I adore her neurologist. I trust her more than any other physician Boo sees. We had a long talk about the autism diagnosis and what it means for Boo. She asked about Boo’s chronic low blood pressure and is surprised that no one is too concerned about it. She asked about Boo’s chronic color changes and again showed surprise that no one is too concerned. That although her Raynaud’s is manageable it is odd that it presents so young and without any rhyme or reason.

I told her about Boo’s newest development: intermittent swelling. That her wrists and hands would swell for no reason. I had taken her to the general pediatrician but by the time I had made it his office she was no longer swelling. As the neuro examined Boo she agreed that one of her hands appeared swollen and asked about her legs. Um…she is always in jeans and sneakers. Honestly (my bad) I never checked. I did say that her legs do get “tight” but we have been stretching them.

Disrobing Boo her neuro said: She isn’t tight she is swollen. Very swollen. But it doesn’t seem to bother her. (That should be Boo’s theme song)

So a parent would think okay what do we do about this?

Her response: call some one else. Okay, not really. But she told me to follow-up with two of Boo’s other specialists. That this wasn’t really her field.

Deep breath. I called Boo’s rheumatologist and was told it (based on a phone conversation) that this swelling does not appear to be rheumatological (is that a word? If not I just made it up like undiagnosed) in nature to “give it a couple of weeks” and then go back to our general pediatrician.

I called Boo’s cardiologist and left a message. No return call yet, they must not think it is anything to be concerned about.

But I am. And I am frustrated. How can one little girl have so many abnormalities. Isn’t one enough? Does she really need 15? I’m thinking she is getting greedy. 

So here is what I am looking for Dr. House. I am looking for someone with a medical degree to give a crap. I want them to look over Boo’s entire history. I want her examined from head to toe and not say they don’t know. We are okay with being undiagnosed. We are not okay with no one exploring why.

This is one face…

Leave a reply

Today is Autism Awareness Day. While I may not (yet) be comfortable with Boo having an added diagnosis of Autism, I am getting there. There is no escaping the fact that Boo was tested and she has been diagnosed with Autism Spectrum Disorder. But what does this a child with autism look like?
It depends on the child. When Boo was first diagnosed my friend Julie told me that Autism Speaks has a motto: Meet one child with autism and you have met one child with autism. The children are as unique as a snowflake. Each wondrous and magical and heartbreaking beautiful.  

A child with autism is born just as perfect as a child born without.



A child with autism will light up your world with their laugh just as child born without.

https://www.youtube.com/v/gFeOIM37YLU?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata


 A child with autism will love and be loved by their parents, siblings and friends just like a child without.


A child with autism may love the beach, just like a child without. However it might take them longer to enjoy the experience. They may also wear sneakers at the beach but that’s okay.


A child with autism will learn to walk, run, jump and talk. Just like a child without.

https://www.youtube.com/v/WHgntYWuEW0?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata


This is what a child with autism looks like.

Photo Credit: Jen Strano


Can you tell? Can you see the autism? Probably not. I hope not. I hope when you see Boo or any child you see them and not one of their diagnoses. A child with autism works harder than the child without. A child with autism spends most of their days in therapeutic environments working to attain behaviors that will allow them to be included. A child with autism is loved by their parents and their peers. By their community.

“You are so out there” is a comment I hear a lot about Boo. But how can I hide her? If I am not out there how can you know a child with a special need and realize they are just like your own child.

Beautiful. Funny. Smart. Frustrating. Heartbreaking. Mysterious. Loving. 

That’s why I blog. Why I refuse not to just stay home and hide. To hope just one person sees my child as Boo first and whatever label they put on her second. Well, eighty-third. Because let me tell you this, there is a lot of things about Boo I want people to see way before they see autism or undiagnosed genetic syndrome or intellectual disability.

This is just one face of autism. 



Please join me in sharing your child’s face, their story, their life. 

Dear Abby

9 Replies



Dear Abby,

When I had you I was terrified. The hospital nurses actually wrote, failure to bond in our chart. I was so sure I was going to fail you. Or worse, hurt you. You were an emergency c-section because (and I quote a doctor here) my body wasn’t meant to survive childbirth. I thought that meant I wasn’t supposed to be a mom.

In all honesty you were all I needed. You taught me how to be a mom. Not a perfect mom by any means. I did not think I had the love, patience or endurance for another child. You wanted a little sister so badly. You even had an imaginary friend whose name was simply “imaginary baby sister”. 

Then there was Boo. From the beginning you at just five years old were my rock. You, my dear sweet child, showed me that I was strong enough to handle two daughters. You, my sarcastic truth-teller were there to keep things in perspective. You, my great educator taught others how to care for Boo. 

The time you told Dawn that Boo couldn’t have peanut butter because she was allergic to dairy. The time you told a teacher that Boo was perfect, she was just in the hospital. When you taught a friend that being having a sister with a “funny pattern in her brain” just means that your sister takes a little longer to learn things. The countless times you practiced “I LOVE YOU” with Boo never knowing that is my secret desire for her to tell us she loves us.

You, Abby, are my hero. I wish I had your grace, your patience and your sense of self. You are confident in ways I can only strive to be at 40+ years. Your imagination astounds me. You are so brave, trying things that would normally terrify me. You are your father in the ways that make me love him. And in the ways that make me want to strangle him. You have an old-world soul mixed with a new-world outlook on life. You are me in the ways you are picky about eating food and in the way your sense of humor aligns with my own. You are so beautiful in your smile, your laughter and yes, your sarcasm. 

On Saturday morning, I awoke exhausted. I lay in bed and listened to Boo over the monitor at 6:30 am. She was gleefully calling your name. As I got out pretended to get out of bed to get her I heard another voice. Yours. You entered her room and quietly said, “I’m here”. You then proceeded to take her out to the living room. You got her IPAD and gave me another hour of semi-rest. You got her muffins and only called to me when her diaper exploded.

Mom I’ll do a lot of things but I won’t take care of that!

That afternoon you received your first phone call from a classmate. You went on your first ever sleep over where I did not know the parent. I didn’t sleep that night for another reason. I was worried of course. But also marveling over how quickly a decade has gone by. How the little baby I was terrified of now completes my heart in a way I never imagined. The house is empty without your presence. I am astounded by how you have grown into such a sweet young girl soon to be tween. The excitement in your voice when you called to say good night. This is the girl you would be, maybe, if you didn’t have to tailor your life to your sister. Not that you complain, ever. But I promise you, I know the sacrifices you make for Boo. That you cannot join girl scouts, after school activities or miss birthday parties because we have Boo-centered appointments.

So thank you, my sweet Abigail. For being you. For giving me an extra hour of dozing. For giving me peace. For sharing your dreams. For giving Boo your unquestioning love. For just being your awesome self.  

Keep living the dream, my Abby. When you obtain world domination this world will be a better place. I simply cannot wait to see the woman you will become.

Love, 
Mom

PS you are still not getting a pony

Will my child cause your favorite teacher to be laid off?

Leave a reply

Last week there was an article in our local paper titled, “Special Education costs blamed for (school) layoffs“. Lucky for Boo this is not her school we are talking about. However it struck a chord. Why must we pit one against another?

Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.

I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs.  


Probably because this is the first time I have had a child in the “special education” cohort of the school system.

Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.

Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community. 

But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot. 

Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom? 

Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.

But who should pay? That is really the question and you are probably not going to like my answer.

I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other.  Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.

Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff. 

There are a lot more students taking electives than using the special education department. 

I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.

However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.