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.
Category Archives: inclusion
I owe an apology
Like many, I have fallen trap to a Facebook hoax. I reshared a link that stated Jenny McCarthy informed the world that her son did not have autism. Thankfully she was quick to rebuke the misleading information. By misinformation I am speaking to the fact that she has never said her son does not have autism.
I rarely reshare celebrity stories or thoughts because I usually do not believe (or care about) the hype. But in this case it hit a nerve.
I admire Ms. McCarthy for being a proponent of autism education. I admire her dedication to her son and her willingness to say this is what autism looks like. I do wish more people would say MAY look like. As any friend of mine with a child who has autism will tell you, they are unique from the color of their hair to their behavior to their abilities.
However her strong campaign against vaccination is something I cannot agree. It worries me when people use a celebrity endorsement to justify their own actions or non-actions. It is one thing to decide to go gluten-free to do your own investigation on how your child will react. It is another not to vaccinate your child (and potentially expose other children) to a life-threatening disease. In the only published study linking vaccinations to autism the lead researcher lost his medical license due to his irresponsibility in the conduction of the study and the study was revoked from medical publication.
I understand that you can interpret a study to suit your purpose. Pro- or anti- vaccine link. I am not speaking to that as I am completely inept at that discussion.To paraphrase the Vice President of Clinical Innovation at Cedars-Sinai stated to the National Geographic: you can have an opinion but you cannot state that opinion as fact.
I have two different views on this subject, from two ladies I both respect and admire.
The first is a mom who decided not to vaccinate her children. However she did this after reading medical journals, doing her own research and consultation with her children’s pediatricians.
The second is a mom who vaccinated her children, but to her it was a deep seeded belief to vaccinate. Her mom was a polio survivor. But survivor is probably a poor term. Her mother was a polio warrior. One who suffered in the time before vaccination. She fought polio until her death at age 70. Her children watched her suffer and live with grace.
Myself? I honestly didn’t think of it with either child. I automatically vaccinated them. However with Boo I spoke with her pediatrician and they modified the schedule due to her health issues. Our Pedi is great. She is very conservative when it comes to vaccinations–even the flu shot–and will minimize the quantity of vaccinations given at one visit. And if you have a runny nose? She will reschedule your appointment and not six months from now. Just call and stop by. She is quite awesome, in addition to saving Boo’s life five years ago.
I am on my soapbox here, and I admit it. I also have no problem telling you and everyone else my opinion on something. But you should never use a “Jenn said” as your reason for choosing a course of action with your child.
As far as autism and the decision not to vaccinate, research has proven that there is no correlation. In most cases this would be a non-issue. The studies have proven time and again that there is no link. However celebrity causes will continue to advocate for more research. Which is great, that is what you should advocate: more research not telling a scared mom that a vaccine gave her child autism.
The decision not to vaccinate your child should be based on your own research, consultation with your physician and a heck of a lot of soul-searching.
But never on the basis of a celebrity.
I stalk Stephanie Sprenger
Last New Year’s Eve my friend Jenn and I were sitting in front of her fireplace trying to warm freezing our butts. She had an epiphany: Let’s go someplace warm next Thanksgiving.
I learned long ago to listen when Jenn says…to do anything she tells you. Last week we drove from New England to Cape Coral, Florida for Thanksgiving. Other than Abby puking in Jersey the drive was really uneventful. Easy even.
We drove through the night, stopping in Jacksonville FLA the next evening. We stayed at the Hyatt along the river front. It was quite beautiful but packed due to a conference. In the elevator (because we are rude and nosy) we listened to as the 20 odd people crammed in with us talked about music therapy.
Turns out we dropped right into a conference for Music Therapist. There were thousands of them. Stephanie at Mommy for Real happens to be a music therapist. I missed Blog-Her but she must be here, right? Right? I began stalking the hallways, the bar, the roof top pool. But no Stephanie.
Of course we found the one Irish bar within walking distance. She wasn’t there either. But I found wine so it was all good. I also met some great people (in my hunt for Stephanie) because after a glass of wine and 20-odd hours in the car I am no longer shy. As we were the only ones in the bar that were not part of the conference we kind of stood out.
David started asking questions and telling them about Boo. They were so helpful, giving us websites in our area to check out.
While I never did find Stephanie I may have found one other way for Boo to spend her afternoons!
Happy Day!
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.
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.
Being included
Last year I was humbled and so surprised when Boo was invited to another child’s birthday party. I remember writing that she was included, that the children in her classroom see Boo and not a child with a disability. But I worried that she wasn’t really a peer. It ended up being a moot point, as we were unable to attend the party due to a family commitment.
At that time a friend wrote to me and said it so wonderfully that just that day her children, both of them, proclaimed Boo to be their friend. That in children’s minds they are all peers. It really is just us adults that make the mistake of thinking otherwise.
I have remembered those kind words. You see, Boo was invited to another birthday party. Yes, I was kind of worried and spoke to the mom (who is also Boo’s therapist at school) but those words kept coming back to me. I decided to be honest and let her know my fear. That we wanted to attend, but I didn’t want her daughter to be disappointed when Boo, well is Boo. The party was being held at a gymnastics center, there would be obstacles and activities that she just wouldn’t understand. She might become overwhelmed or disruptive. I honestly didn’t want Boo to detract from another little girl’s first ‘for real’ birthday party.
Thankfully, the mom completely understood and reassured me that all would be fine. I’m sure it helped that she works with Boo a couple times a week! We went and Boo had a great time. Sure, she didn’t participate like the other children. The teenagers running the party had to pay her more attention. They were accepting and kind. I only had to rescue her twice when she got overwhelmed. The older children attending the party made sure she was safe and the youngers ones just ran around her.
But she had fun! She ran around the obstacle course in her own manner. She ate her cupcake (and tried to eat the child’s next to hers). She watched her friend open presents (and tried to steal them). She squealed at the Princess goody cup and stickers. She proclaimed HAPPY DAY and HAPPY CAKE to her friend.
She was a typical kid having fun at a birthday party. And just like that typical kid, she barely stayed awake for the ride home!
I am so thankful that last year a kind friend planted the seed: that adults see the disability not the children. I realized as I was writing this post that four years ago I never imagined this day. THIS day that Boo would be invited to a party not because of inclusion but because of friendship.
A happy day indeed.
Would you CARE?
It’s the last day of the 31 for 21 Challenge. I didn’t really make the goal of blogging everyday. However I was beyond happy to participate. As this is the last day I was thinking about Robert Saylor. How this young man with Down Syndrome lost his life because those who are there to protect were not trained to work with those whom have special needs.
Because while you might be aware of Down Syndrome you might not really understand it.
Then last week I read an article about the C.A.R.E. program. C.A.R.E. stands for Children and Residents Encounter program. It is the brainchild of the Colerain, OH police department. To my understanding, this program is designed to educate emergency personnel to those within their community with special needs. Be it Alzheimer’s, autism, mental health issues or behavioral issues.
Colerain has an estimated 1 out of every 150 residents on the autism spectrum. Chances are pretty great that at one point the emergency personnel will come into contact with a person who has special needs.
C.A.R.E. is a program where the family gives the emergency personnel information regarding the child’s (or adult) health and mental issues. The parent provides detailed information: are they on a monitor, do they have anger issues, what medication are they on, do they elope, what if anything do the police need to know if they are responding to your home or anyplace in town where that person might be in need of assistance.
Just think, if the police had known about Robert he might have lived. They would have been aware of his triggers, known he had Down Syndrome and been trained to deal with a person who has diminished capacity.
Yes, apologies to all the parents I just offended, but our children have diminished capacity and do not understand that their behavior has unintended consequences. Sadly, neither are the first responders always educated.
One argument against C.A.R.E. is that we are giving up our children’s privacy. Do you really want your neighbor who listens to the police scanner (my MIL) know that your child is suffering from (insert your child’s diagnosis here). Heck, I do it everyday here on this blog! But I see their point. Some parents are not “out” they don’t want the neighborhood to know that their child is autistic or bipolar or clinically depressed.
But in an emergency does privacy matter? If your child has suicidal tendencies wouldn’t you want the first responders to know? If your child is prone to throwing lamps in anger wouldn’t you want the first responders not to respond with force but with patience and kindness? If you child is deaf and does not hear the police say stop as they run in fear would you like them not to use force?
If you were Robert’s mom wouldn’t you have wanted the police to know that her child didn’t understand why he couldn’t just rewatch the movie? While I have never met Ms. Saylor I can imagine her anguish.
Upon learning about the C.A.R.E. program, I reached out to our local police and fire departments. I asked them about signing onto the program, or a similar idea. I explained how the Ohio police department minimized training costs and related expenses. They replied that this was one of their long-term goals.
Which I appreciate.
But I want more. I don’t want a goal I want a program. I want our police and fire to have a card on Boo. I want them to know her name, what she looks like and how to react should they encounter her during one of her eloping episodes.
Screw her privacy. Her life is more important.
To be preachy, so should your child’s. Forget their privacy or your embarrassment. Contact your local police and fire departments. Tell them about C.A.R.E. or another program that will protect everyone. If that doesn’t work, tell them about your child! Tell them you have a child in your home that has special needs and they NEED to have this information.
Think of Izzy and her mom, whom the area hospital knew and still couldn’t protect.
Think of your child and their temper tantrums. When they are out of control and you are doing the best you can but the neighbors call the cops to protect you.
Think of your child who climbs or wanders and the new neighbors do not understand that your daughter is autistic and does not realize they cannot swim in any pool they come across.
Think of your son who is manic depressive and might encounter emergency personnel during one of his psychotic breaks.
Truthfully, the neighbors and police and EMS are not wrong. When faced with an out of control person or a child that looks much older than they are developmentally, they have no other thought than to protect those in control. They will try to reason or restrain with compassion. But in fear for themselves and those around them they will also respond with force.
It is not anyone’s fault. Not your neighbor’s for calling the police, not the police for seeing an out of control person and trying to restrain them, not your child’s fault for having a disability and not your fault either. Ultimately we need to protect our children and those they come into contact. I think C.A.R.E. is a great start.
Think of Robert and know that could be your child.
Screw privacy and think protection.
In Robert’s Memory and in Respect for a mother’s grief I end this month of Down Syndrome awareness in their honor.
Not everything needs a tag line
Dear Chicago Tribune,
I am not a resident of your city and in fact have only visited Chicago once in my life. But I am requesting on behalf of the parents in your community to redefine the newest tax approach for Kane County.
The premise is nice, from my reading, the intent is to increase property taxes in Kane County, IL to create funds to support individuals with developmental disabilities. As a mother of a child with special needs I usually support anything that will assist my child receive the services she desperately needs.
But to call it a disability tax?
How about calling it a social service tax? Or Community Building tax? Or even help thy neighbor tax?
The services provided would include: education, therapy, training and other services to allow those with developmental disabilities the opportunity for independent living. These same individuals with your county’s support would then become a part of your working community.
As a home owner from Massachusetts, I agree taxes are out of control. After all, we are number 6 in the US for highest residential property tax rate.
I do not wish my child’s disability to be a ‘ tax burden’ on anyone. And I agree with the opponents who say that the tax code need to be redrawn and that the federal and state support should be better mandated. However, I am thankful that she is a ‘social burden’ as she enriches everyone’s life she comes into contact. In some ways, I think this is a great idea. Instead of raising your taxes and you not really knowing where the money is being spent, you will see your tax dollars at work. The median household would be spending just $55 a year to impact lives in a meaningful way.
How incredible.
According to the article in the Tribune, Kane County has almost 16,000 residents whom this tax would benefit. I hope it does pass and is used as it is intended and not mired in the bureaucracy that seems to overtake good intentions.
I commend Kane County for taking a proactive approach to inclusion and support. I think it is beyond wonderful that you saw a need for your residents and are doing your very best to enrich their lives.
I just really wish you would think of a different tag line.
Thanks
Yesterday was a crap day. For me. Not for Boo though. I wanted to let everyone know that not only did she survive the field trip she enjoyed herself. According to David she not only touched a pumpkin but plucked an apple out of a tree!
I know I wasn’t alone yesterday in my meltdown. Other parents experienced the same emotions I did. They just didn’t spew to the entire world. But I am glad I did. I almost did not post yesterday, fearful that I would offend Boo’s teachers and therapists. Fearful that I would look like an idiot when David took her and Boo did not melt down. Fearful that Boo would melt down and I wouldn’t be there to hold her in my arms.
I want to thank each and every one of you though, for supporting my meltdown with texts, e-mails and comments. I cannot tell you what it meant that you understood. Or if you didn’t understand you empathized. A friend put it so well, this was a case of mommy guilt at it’s worse. Something we all go through during this crazy period of our life called parenthood.
Since parenthood is going to last for the rest of my life I know that there will be other moments when Mommy Guilt overwhelms me. I always thought Catholic guilt was tough, man I knew nothing before children!!
Including how I never knew that parenting was a team sport. So, thanks to each and every one of you who are on my team.
I’m taking the easy way out….
Today I am failing as a mom. I am taking the easy way out. No, this isn’t a post for you to say Kerri you are fine, stuff happens. I am not looking for you to make me feel better because I do not deserve it. Because a mom isn’t supposed to be selfish. A mom is supposed to put her pain, her failings, her fears and her sadness aside for her child’s joy.
But I am not doing that today.
Today I am hiding my head in the sand, okay my body at work, and letting David take Boo on her field trip. Last year, I took Boo and we went to a pumpkin patch and apple picking. This year it is the same trip and I am bowing out. This is Boo last year:
You might not be able to see it, but there are tears running down her face. I let her go at her own pace (way behind her classmates). When we got to the patch all the kids were running around, she was overwhelmed. By the dirt, by the pumpkins by the noise, by who knows what. Her teacher came back with us so we were not all alone but by the time Boo got her pumpkin everyone had proceeded to the apple orchard. Again Boo tried but she was in her own world. She hated the field trip and I felt awful for making her go outside her comfort zone, even if it was what she needed. So I held back the tears (incredibly thankful for sunglasses) as the teacher gathered all the kids around for the sign along. Boo was there but not there. Her mind tired and I saw her retreating into herself.
The field trip ended and we left the farm. I cried all the way home. It wasn’t the teacher’s fault, the students or the other parents. They all included Boo. These feelings are my own and incredibly selfish. Because I looked at Boo and felt bad for her. That she didn’t enjoy herself but more than that. That I looked at Boo and saw her disability.
Not what others perceived but, as Kristi posted on Friday, how being in Public showed me how my child was not typical.
And moms are not supposed to do that. We are only supposed to see the beauty and innocence of our little ones. I failed. I cried. I realized that this is my problem and cannot blame anyone other than myself.
I know that this year will probably be different. Boo has more mobility, more words and is no longer afraid of dirt. I am sure that David will come home and tell me what fun it was, that she had a great time. So I apologize to her. Because I cannot face it. I will not chance it being a repeat of last year. I simply do not have it in me to go on another field trip of nightmares.
This is my failing, not Boo’s.
I’m so sorry Boo.

