Category Archives: wander

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 (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.

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

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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.

We are still okay…

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Boo has had to undergo neurological/psychiatric testing over the past two weeks. There hasn’t been any issues, other than her turning five. In our state (for insurance purposes, I believe) once you turn the ripe old age of five you are no longer allowed to be undiagnosed and/or globally delayed.

Boo had to go twice, for two hours each day, to meet with a psychologist for a battery of tests. (I think battery is a strong word, she didn’t hurt Boo). The tests varied from intelligence/cognitive testing to behavioral/autism to play skills. Part of me wanted Boo to bomb the testing, securing her services. The good mom in me wanted her to excel.

Typical Boo she did a little of both and managed to frustrate the doctor. I wish I could have Kristi’s artistic talent to demonstrate the following (I tried, I failed, I didn’t want to hurt your eyes):

Doctor: Boo stack the blocks like this (imagine, two next to each other and one on top)
Boo: (hands the doctor the blocks after banging them for a minute)

Doctor: Can Boo climb onto and out of an adult chair?
Boo: Moves said chair next to exam table, proceeds to climb on top of chair, to table, to window sill in an attempt to get out of the room. We happen to be on the 10th floor and very thankful the windows don’t open.

I’m impressed that Boo realized she had to do something with both the blocks and the chair. The doctor is distressed that she cannot follow direction.

At the end of the two days the doctor asked us if we had any questions. I ask her how she feels Boo did. She had previously thrown out words: autism, PPD-NOS, mentally disabled, intellectually disabled, ADHD and a bunch of other terms. Her response:

I have to score the tests.

Hm…now those that know me know that I tend not to be brushed off. I (politely, I swear) reminded the woman that she was an experienced professional who must have some instinct to how Boo had tested.

After a moment or two she told us that she honestly didn’t know. That she wanted to show the test results and video to not only Boo’s neurologist (whom I adore and trust) along with other colleagues. How Boo performed was baffling:

She shows signs of Autism: Will not look the doctor in the eye.

She shows signs that a child with Autism wont: She told the doctor to “look” and sought her attention.

Autism: Hand flapping, quickly distracted, would not follow directions, toe walking
Not: Social, engaging with materials, attempts to please, would put heals down when prompted by cue

Autism: lack of safety awareness
Not: asked for help when trying to get down off the exam table

Intellectually disabled: Cannot copy a “t” on the paper
Not intellectually disabled: can hold a pencil in the correct grasp

ID: Cannot follow a two-step direction
Not: Knew she needed a pencil to draw on paper

ID: Poor motor planning
Not: Pushed chair to get to top of exam table

The examples go on and on. In the end the doctor said at this point Boo is a Medical Enigma.

Where have I heard that before?

She will convene a team (about damn time) to look over everything. She agrees (as do neurology and genetics) that whatever is going on is neurological in origin. In the end it doesn’t really matter what “term” they give Boo. I think Bridgetitis is a lovely term. We will continue to advocate, get therapies that work and love her the same with or without a medical diagnosis.

At five years old, she remains undiagnosed and we are still okay with that.

Happy Day!

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Today Bridget turns five. FIVE. That is half a decade I didn’t think I would have with this beautiful child. I have a tradition. Every year I thank everyone who helps her be the best she can be.

Her school. Her teacher and assistants. Her classmates that include Bridget not due to inclusion but due to friendship. With their help she has found her voice. A year ago she was in class but quiet. Now she bosses her classmates at the top of her lungs. A child we were told would never speak shouts.

Her school therapists. They have the hardest job out there. They remain kind but strict, loving but firm. I honestly do not know how they care for the children in this program day in and day out. They are poorly paid, over qualified and have unending patience. We are so very lucky to live in a town where children with special needs are included and counted. With the upmost care they have taught Bridget how to jump, how to draw a circle and how to be plugged into the world around her.

Her Spaulding team. She has the best bunch of therapists at Spaulding. They have become our support system, our friends and our race buddies.

They care for more than just Bridget. Her SPT has helped Abby with her homework, or well tried to. Her OT has let Abby be involved with sensory play. Her PT has let Abby be a part of the obstacle course. It’s more than the therapists. The secretaries greet Bridget with a smile and a hug. The medical assistants whom we are not patients for pick Bridget up and listen to her babble. They meet David & I out for dinner. They see us as more than parents of their patient.

Her Children’s team. This year Bridget graduated out of three programs. Her MD list is down to eight. That’s right EIGHT. She still has her quirks but now only needs to see the other doctors in an emergency. She is STABLE people. As in stable does not need intense monitoring. As in has not been hospitalized in TWO years. As in only has to go to CHB twice a year.

Her friends. The little girl who invited Bridget to a birthday party. The friends that come over to our home because it is easier for her than going to theirs. The friends at our Irish pub who smile at her antics when we take her out for dinner. The friends that encouraged her all summer so we could have this moment. This beautiful moment:

Her family. The ones the read this blog and don’t get upset with me for my openess. The ones that know by reading this blog they are helping Bridget. The ones that don’t read this blog but show their love to Bridget by supporting her every moment.

Her sister. Abby is aware that her sister is special. Each year the definition, in Abby’s mind, of special evolves. But what never wavers is her love and support. She is the reason Bridget went into the ball pit of terror in OT. Her name was Bridget’s first word and she is the first person Bridget runs to after school.

Today is Bridget’s Happy Day. And I thank each and everyone one of you for making it so.

The Hardest Part of My Day

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There are some days when all I want to do is give in to Boo. When I want to just give her a cupcake, okay a third cupcake. I know, in my heart, that the ABA therapies are working. That Boo is better with all the work her therapists do with her on a daily basis. Sometimes the work gets the best of me.

At workshop when Boo gets stubborn they wait her out. They make her do her work (I wish they could make Allie do her homework). But at home I struggle. If I ask Boo what sound a monkey makes and she doesn’t answer we move on. After all there are dishes and laundry to do, hugs to be given and Allie’s homework to be done. Concerts to be ~~tortured~~ enjoy. Oh and dinner to be made.

At school she HAS to answer. Now I know what you are thinking. Does it really matter if Boo answers OO AA for a monkey sound. Probably not. But if some one asks Boo her name she HAS to answer. Especially if she goes missing. Since she refuses to say her name that is an issue. And it all starts with OO AA.

Actually it starts with her name. She will say it, sometimes quietly, when asked. But on her terms, her oh so stubborn terms. She digs in on the most surreal things. Okay surreal to me. Why doesn’t she want to say OO AA? I mean she said it the whole way to Niagara Falls. Over and over again. I wish I could have an inkling into how her mind works.

I spoke to her speech therapist about it. She feels that sometimes Boo has a difficult time finding the word in her brain. Like there is a detour or misfire. She will consistently say cow but then the third try she says cat. Almost as if the repetition is tiring on her brain. She encourages us to continue fighting for those moments when Boo is in the moment and can say the word or perform the action we are demanding.

Her SPT reminded me to be the mom and not the therapist. That it is a hard, difficult balance between the two hats we have to wear.

And that’s the hardest part of my day, when I have to be the therapist and not the mom. So we went home and had cupcakes for dinner.

This extremely non-funny post for the Finish that Sentence Friday is to be blamed on the hosts. Usually I can go light but well it has been that type of week. What with falling down and all…

Let’s hope next week’s sentence is something like….Believe it or not I let my husband live after he….

Meet Boo’s friend Zachary!

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I’d like to introduce you to Boo’s friend, Zachary. Zach is a fabulous boy in Boo’s class who happens to have autism. Zachary was the first boy to hold Boo’s hand. It was so awesome, watching them walk into school together.

Like Boo, Zach is a frequent eloper. If your child has never eloped count yourself lucky. Boo has tried to escape us many times. Not on purpose or intent. She is just not aware that she is no longer with our group. We can be in the yard playing, blink for just a moment and she is gone.

It is a scary moment for any parent. But for a parent like Zachary’s mom, Laura, it is beyond terrifying. You see, at fiveryears old Zachary is considered non-verbal. He would probably not respond to calls of his name, nor would he be able to tell a stranger his own. Zachary is always in motion. Like Boo, unless he is contained in a stroller he is off. He has no awareness of the danger. At home doors must be securely locked (even in the heat of summer) and windows must have a no-escape feature. He sleeps in a secure tent to limit the chance of him wandering while his parents try to sleep. Yes, I said try. Any of us with a child who has the need to wander sleep with one ear open.

Zach’s awesome parents are turning to 4 Paws for Ability, a non-profit organization that places certified service dogs with children of various disabilities. In Zachary’s case, his dog would be trained to provide sensory input, interrupt dangerous behaviors, calm meltdowns and most importantly the dog would keep Zachary safe. The dog would be trained, in the event that Zachary did elope to find him. The dogs are trained to follow his scent and locate him within minutes.

What more could a parent ask for? Well, the money to provide their child with the security he deserves. A certified and trained dog costs $13,000. Parents of children with special needs do not have discretionary income. Our children cost more than the typical child. Our incomes are lower than before as we need to take more time off of work for therapies, doctor’s appointments and other activities to assist our children. Our free money gets spent on sleeping tents, door alarms and adaptive equipment.

To have $13,000 to spend on anything would be huge. To have the money needed to provide safety for our child would be a miracle.

I asked Laura if I could share her story to spread awareness. Last month two families lost their child to autism. Yes, I went there. Autism was the culprit in their death. A child who eloped for less than 20 minutes from her grandmother’s house and was not found alive. This is a tragedy. If it only takes a dog that can locate a child within minutes and save a child I am all for spreading the word.

I am also hoping to help Zachary in his fundraising efforts. They have currently raised $2,400 towards security. If everyone who reads this blog donates $13 then forwards this post to 20 of their friends who donates another $13 it would only take a thousand readers to provide Zachary with a safety friend.

And allow his mom and dad to sleep a little more soundly.

To donate please visit http://www.razoo.com/story/4-Paws-For-Zacharyor you may mail a check with his name on the memo line to: 4 Paws for Ability, In Honor of Zachary Fiorillo, 253 Dayton Ave., Xenia, Ohio 45385. (If you do send a check, please remember to add Zachary’s name!).

To learn more about Boo’s amazing friend, please visit: https://www.facebook.com/4PawsForZachary

How not to get the mom of the year award.

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No, this is not a post a poor me post. There are days when I know I am not being superwoman. There are only so many balls I can juggle. Between mom, therapist, doctor, worker and wife.

There are days when I forget to put a sandwich in the lunchbox. Yes, I did, not this morning but recently. I have sent Allie to school three days in a row without bathing her. No she didn’t stink. At least I hope not. I have tried to convince Allie not to attend her school social events and forgot to feed them lunch on the weekend. Unless cookies and yogurt count.

On Monday I seriously took the cake of so-not-mom of the year. Okay, I ate the cake that I had hidden from the girls. In the closet. But I digress.

Boo had a field trip. After the last field trip there was no way I wanted to go and work provided a handy excuse. Since I was already taking time off this week for another of Boo’s appointments I could not justify being out of the office. Of course as so often happens, husband was also working.

I sent Boo on a field trip by herself. Okay, not herself, she was with her aide. I did have her tag pinned to her back letting anyone who may find her, if she wandered, what to do. I was a nervous wreck. But I left her anyway. She may have been the only preschooler without a parent there and she couldn’t care less. From what I am told she had a fabulous time. I still worry that I have scarred her by not being there.

As we got ready for the day my husband and I were talking about how we couldn’t go with Boo and how nervous we were. As I dropped Allie off at the bus stop she said:

Why are you so upset about not going on Boo’s field trip? It’s not like you have ever gone to any of mine.

Yup, not only is Allie the master of the understatement she is also the master of Mommy Guilt. Her revenge?

The Spring Concert. Tonight we are attending the grades 1-4 Spring Music Concert. As Allie is in 3rd grade that means we have to sit thru two grades singing two songs each and then the intermission. Did I mention the Bruins first Stanley Cup game is tonight?

The one upside to not winning mom of the year is that I won’t have to dust the mantle for display purposes.