(Originally posted on 30-JUL-2012)
Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kidswith Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot . It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.
In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.
Not only did the parents lose any hope of privacy, so did the other children.
It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.
The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.
But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!
When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.
We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.
When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.
I better make sure Boo’s socks match.
|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.
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.
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.
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.
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.
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.
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.
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.
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.