Category Archives: developmental delay

A year of thankful

I haven’t played with Lizzi in a while. Not that I haven’t been thankful, just been to busy to give Thanks. I am sure I’m not the only one! To suck up show how thankful I am here I am breaking the rules (go figure) and doing 12 things of thankful. One for every month of 2013 I survived. 

January, I was thankful for the Liebster award.

February, I was thankful for Abby’s sense of humor and honest about who her favorite person is (hint, not me).

March, I was thankful for people understanding that the word Retard means something different to me now and joining me in abolishing the word.

April made me thankful for Jimmy Buffett as I realize he gives us the soundtrack for a laid back life. The sound track, not the manual.

May I was thankful to be able to tell people what drives me crazy.

June I was not thankful for yard work but happy to know I am not alone.

July I was thankful for all the ways my girls make me smile.

August I was thankful for husbands.

September I was thankful the girls were back in school. Also that boys are gross.

October I was thankful for Boo’s therapists and friends that let me take the easy way out.

November I was just thankful for Boo.

December I am thankful that I have come a long way since January.




Ten Things of Thankful

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.


Picture this…

It’s that time of year when our e-mail inboxes get slammed with spam from Shutterfly and Snapfish advertising discounts on holiday card orders.  All the cards they have in their ad displays a beautiful portrait of a family interacting so naturally hanging out in a field or by the beach.  Everyone is smiling and laughing.  You can almost feel their happiness.  I always think, “I could NEVER get a picture of my kids doing that”..  Worse, I avoid that formal picture because I know that Boo will have such trouble focusing on the photographer. She might look vacant or checked-out. 

But then I met Zach’s mom, Laura. Her reply? Well, of course you can!  I’d like to introduce you to Laura, an awesome mom and someone who taught me to relax in the moment of trying to get that ‘typical’ family portrait. 

 
And hey, my first ever guest posting on my blog!

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Photo Credit – Trace Melody

I’m a mom-tographer based on the Cape.  Every year around the holidays my schedule packs up.  Parents contact me sounding anxious to schedule a holiday session with their kids but apprehensive.  The conversation always starts out with the same phrase “I just want a few good pics of my kids.” And they hope to, “Maybe get a nice one of all of us”.  Then, their session rolls around and we rock it out.  I may show the parents one or two little quick glimpses on the back of my camera but I like to save the best for when they see their gallery. 

The gratitude for not only beautiful portraits, but also for a fun experience is what pours out of these families.  I love giving that experience to people.  Giving them a visual representation of not just what their family looks like, but WHO they are together.  Their connection and how they interact with one another.  Capturing their children’s reactions to their Daddy’s funny story-telling voice.  It’s the art of the family I always strive to capture.  And it’s not always easy.  Those amazing smiles usually come after some protest and maybe a few tears.  But I keep my patience with a few simple tricks that you can use if you’re going try and take a holiday portrait yourself! 

   Get outside!  Kids are naturally more relaxed outdoors.  The light is gorgeous outside and you’re almost guaranteed a few keepers if you shoot outside.  Preferably right around the 3pm mark. 

   Put their back to the sun!  People have this common misconception that they need to light up their kids’ faces by having them face the sun.  Not true.  Put their back to the sun and you’ll have some gorgeous results. 

 

 
  Turn off your flash!  Especially when shooting outside.  Flash is unflattering and gets rid of some very interesting shadows on the face.  Shadows show depth and make a portrait more dimensional.  Turn off flash.  You’ll love the results.   

  Take the pressure off.  Try to steer clear of phrases like, “Ok!  Let’s go take a picture now!!  Everyone look at me and smile!!  If you don’t smile no candy!!”  These phrases put pressure on the kids and will almost always produce less-than-desirable results.  Instead, try taking your children to a park or an unfamiliar field.  When your kids are involved in exploring, get low on their level and talk to them.  Talk to them about their favorite character from Sophia: The First, or Handy Manny.  Have your camera ready and when they glance up at you, press the shutter.  Their face will be natural and relaxed.  Even more so if you get them to laugh at you singing!  A much better smile will happen if it happens naturally rather than forcing it by saying “Cheeeeeese”. 

 

 
  If you have sensory sensitive kiddos, be aware of their triggers and head them off at the pass.  If they don’t like grass, bring a throw blanket to toss on the grass.  Or a low stool for them to sit on.  The problem I have when I try to photograph my own son (who has classic Autism) is that he sees me every day.  I’m not interesting to him.  So, I have to make silly airplane noises and wave my hands in the air to get him to notice me.  But once he sees me and thinks, “Hey, mommy is doing something pretty silly there”. That is when I’ve got him.  I can capture his laughs in-between my silly acts. 
 

And if all of this still intimidates you, you could always invest in a professional to help you capture your families.  Special needs families are personally a favorite of mine to capture because I KNOW how I longed for someone to capture our interactions as a family together.  I needed to freeze the period in time where my sensory-seeking child would press his face into mine so hard, he’d shake.  And his infectious giggle when his daddy would make him fly up in the air.  Those moments for me are priceless.  And when I can take a family who is convinced that we’ll never get a good shot of their child because they’re fixated on the car door, that’s a challenge for me and I adore the parent’s reactions when I show them the incredible results. 

 

Laura Fiorillo is the owner of Family Tree Photography located in Sandwich, MA.   Contact familytreephotography@hotmail.com

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I’d like to thank Laura and the parents who allowed us to share their photos to demonstrate how our children are just so beautiful. While we never got that formal family photo, our pictures are unique just like our family. I cannot thank Laura enough for prompting me to do the photo shoot. Remember I once explained how Boo does the full body hug? The one that just pours out her love and enjoyment? Laura captured that moment which is so more spectacular than a staged formal shot. 


 

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.

The truth about Allie and Boo

When I first started blogging I was a little nervous about the world of blog. Who would I meet, how much should I share, would anyone even read my ramblings? I also wondered on the fairness of outing my children’s lives. Was it fair to them to tell the world that they are awesome but have bad days? Is it my place to tell some one in Australia (no offense, Bron!) that Allie had a bad day at school or that Boo had a meltdown?

Also, my husband think the internet is the devil and Facebook it’s spawn. That probably colored my thinking.

However I knew that Boo’s experiences were important to share. I knew that OUT THERE I would find some one, any one, who had the same what the heck am I doing  approach to life. Turns out I first met Kristi and then Joy and then a host of other characters (admit it, you are all characters). You don’t have to have a child, or a child with special needs, I just knew that I could reach out and help just one person not have to go through the uncertainty I lived through. I also hoped I would find some one out there that would tell me THIS is what Boo has, THIS is why she is so delayed.

Hey, if the science isn’t there the community might be.

If I touched just one person this blog would have been worth it. But I didn’t touch one person, I made connections with so many that this blog evolved into something more. More than Boo. More than a Mom who suffered from holy crapness. More than the tale of how Allie’s love for Boo transcends and teaches others that sometimes a person is just a person and all the labels in the world do not matter.

I found an extended community and began to feel weird that I wasn’t reaching out to those who love and actually know us if they saw us in the grocery store.

Then I decided to come out of the blogging closet. If felt wrong somehow to be hiding Boo’s accomplishments and stumbles from those who could have immediate impact. Her therapists, her friends, her family, her teachers. The people who might read this blog and say “Hey Kerri let’s try this….”

What I never imagined, though, is that I would actually meet my virtual friends or that real life friends would start calling them Allie and Boo.

I know most of you have guessed that Boo isn’t her real name but neither is Allie. Boo came from when she was in the NICU and I used to say, I know you have a Boo Boo but I am going to make it better (yep, I thought I was all knowing back then). Boo was my secret name for Bridget because in my heart I knew she was more than the Boo Boo. I knew that she would be awesome and spectacular. I would whisper to her, you are my Boo. Maybe not perfect in the conventional way but in the mom way. I love you and will cherish every moment of the time you are with me. This was before I realized she would survive the NICU. It was also during the moment when a NICU nurse asked me her name and I spaced. In my defense I was working on having a C-section 4 days before and about an hour sleep since then. I remembered the little girl in the Monsters Movie, Boo. She was afraid but not only overcame her fear she kicked butt. Bridget became my Boo.  If she could be brave at just a week old, I could suck it up. When I created this blog Boo was the natural name to call her.

Allie though, was different. Allie was Bridget’s approximation of her name. I know, I should have chosen Sunflower so that you would know that is not her real name. But I never imagined a time when one of you would meet her in person. I was trying to protect her identity and her privacy, to some extent.

But then I came out and someone called her Allie. She was kind of like, my name is….Then I met Kate and she gave me a weird look when I was telling a story to her Joe and realized I had never clued her in that Allie’s real name is something different.

I asked Kate what she thought about me coming all the way out with the girl’s names. She said that I have such an honest blog that it would be natural for me to use them. But that I would have some explaining to do! After all I use mine and David’s real name. I put everything out there, the good the bad the ugly and trust all of you not to judge but to offer advice and support. Why wouldn’t I trust you with the girl’s names?

So as of today, I may still call Bridget Boo. Sorry it is just kind of natural for me. But Allie will be her own person, just as she is in real life.

Friends, let me introduce you to Abigail or as she likes to be called Abby. The best big sister Boo could ask for and she is kind of a cool if sarcastic daughter as well.





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.
 

The very best part

The best part of my day is putting Boo to bed. This is my time with her. The time of day that I will not let anyone else interfere. I am steadfast that no one puts her to bed other than me when I am home. This moment is when she hugs me with her whole body as I carry her to her room. She hugs me around the neck with her legs around my waist. Lays her head on my shoulder and snuggles close.

I lay her down on her bed and say I love you. She replies ‘ank you’. While I wish for some day to hear her tell me she loves me, ‘ank you’ is enough for now. I lay her down, cover her with her blanket and slowly walk out of the room.

I say one more time, Night, night Boo I love you and hear, ‘ank you’ one last time. My heart swells with love all the field trip pain melts away. I don’t care that she is delayed, just that she is sleeping in her bed. I don’t care that she cannot say or understand I love you. Because I know that while she might not understand it, she knows that she is loved.

That is how I finished the sentence this Friday, the best part of my day is….

Tell me, what is the best part of yours?

Finish the Sentence Friday