Category Archives: Safety Net


**Warning Rant Ahead**

Some times….I hate this life. I hate that as much as I love Abby I fear those teenage years. I hate that one day she will go through a period of her life where we will not understand one another.

But I accept that. 

I will not effing accept is that I HATE in capital and bold letters that doctors will never show concern for Bridget. That she has to have some mysterious swelling that one doctor tells me to call another doctor about who tells me to call yet another specialist about. That when I finally get her into the vascular clinic she is seen by one doctor and fourteen medical students/fellows and I am told that her vasomotor instability is not that big of a deal. “A LOT” of kids have something “like” this phenomenon and not to worry. When asked if I should be worried that it could be happening while she sleeps and is it fatal, I was told no. I told them they would be the first person I called should they be wrong.

No parent (and I am not looking for a poor Kerri thing here) should be told that. That without any testing, with a brief exam that their child is fine. Parents should not be made to feel like we are bothering doctors. 

We are the reason they can afford their student loans, vacation homes and alimony bills. 

Bridget has SIXTEEN different specialists. Why the freaking hell do I have to call them? They are all at the same flipping hospital. Can they not call one another and chat, is that too much to ask?

And why, dear God why, do they refer to one another and then disagree? Why must I always be the advocate, the voice of reason and the fingers of Google. Why do I have to always be vigilant? The one who e-mails and calls cardiology, genetics, rhuematology, neurology, GI, neuro-urology (yes, there is such a thing), pulmonology? Why do they think that because it is NOT life threatening it doesn’t impact her life?

Not that she “suffers”. There are children with disease, cancer and deformities that have a life so much more difficult. I completely get how lucky we are and how selfish I am for getting pissy that she has to endure things that really are not that bad in the scheme of things.  Recently she got another quirk, not an ailment or symptom really. But just one more thing to add to her Booness. I said she already had 15 why add one more. 

This was not the life I expected.

To constantly be second-guessing myself. And the Harvard Graduates.

To wonder if I push too hard or not enough.

To cry because children are supposed to be beings of joy before they are teenagers.

To be at my wits end because although I love Bridget for who she is I hate the fact that I don’t know why she is the way she is. That we need to know the why so we can give her the best life she deserves to live. Just like her sister.

To have to physically hold my child down for two hours while she screams during a test of her bladder function. 

Because as much as I love my child sometimes I resent that she isn’t perfect.  That she isn’t easy. That she, with all her advances, cannot keep up with where life has placed us.

Because I am not capable of being the perfect mom that can handle everything.

Because sometimes I cannot even handle my beautiful, awesome, perfect daughter.

And I am sorry. Because sometimes I effing resent it. I fucking hate that this is our life. A life where we know our beautiful daughter will always struggle. That our lives are scheduled around school, therapies, doctors appointments and not play dates, gymnastics and ballet. 

We will struggle with Boo. For freaking ever. This will not end. That although our children are always our children Bridget will forever be our child and not the mother of our grandchildren.

That I look into Boo’s eyes and see how beautiful she is yet think if only….

***End Rant***

Throw Back Thursday-Turning Right

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 ( . 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. 

This is one face…

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.

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.

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. 

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

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.  

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.

I’ve written before about Boo’s wandering. It started about as soon as she came off the walker. If she is outside you blink and she has eloped. It is beyond scary to know your child will wander off and not realize she is unsafe. I even had a bright idea and e-mailed NIKE about putting a chip in children’s shoes.

They refuse, on principal, to take unsolicited advice.

So I remained scared and worried. A lot of my fear is due to Boo’s lack of verbal skills. Then a police officer friend told us about Safety Net by LoJack.

Let me state right here, I am not being paid nor has LoJack asked me for any type of endorsement. They have no idea I am even writing this post.

Safety Net is a bracelet Boo wears. It has a rocking purple strap and about the size of a watch. Okay, it is a tad big on her….but she is a petite little thing! She wears the bracelet 24/7. If she wanders we alert 911 and provide her name. Our local department has her signal ID. If we travel we let LoJack know our destination and they will alert authorities that we will be in there area.

Unlike cell phone and GPS signals, LoJack uses a radio transmitter that can be used in any condition and locale. Since we like the mountains, we were relieved. Her bracelet is waterproof. She can use it in the bath, the pool and the ocean. And if we can convince her the sand.

It is expensive, $400 for the first year. We asked our families to contribute. We let them know what we were doing and asked that instead of getting her a birthday/Christmas present this year they take whatever money they normally would have spent and put it towards her safety.

All responded with generosity. They understand that Boo doesn’t “play” and doesn’t need material things…but she does need to remain safe. While her bracelet will not stop her from eloping, it will help us locate her with a great chance of finding her alive.

The system arrived within a day. We put it on Boo. She did NOT like us putting it on. But now that it is securely on, she has been showing off her “bracelet” to everyone she comes into contact with. She has slept, bathed, done crafts (with grandma I was banned by Abby) and gone to school with it.

She has been wearing the “bracelet” about a week. She has asked for it to be “off” once and a while but for the most part has realized it is staying put! 

If you see Boo around town make sure you ask her to show her new rocking accessory.