Category Archives: undiagnosed

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.

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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.
 
 

The truth about Allie and Boo

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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

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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.
 

I’m taking the easy way out….

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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.

 

I will gladly stand in line….

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Like many moms of a child with special needs I am a little worried about the changes Disney is having to make to their Guest Assistance Card policy. Here’s the thing though…I am not upset with Disney.

 
I’m upset with those who take advantage of a Company’s good will. How dare anyone make life more difficult for those who already struggle. To add insult to injury, there are those who state that our children “cut in line”.

Really? Hmm…I will gladly stand in line for a ride and have done so before and with Boo. So here is the deal I propose:

How about if Boo stands in line and you stand in her therapy appointment?

How about if Boo stands in line and you clear her airway when she chokes on her drool?

How about if Boo stands in line and you hold her on your hip because she is too week to stand on her own?

How about if Boo stands in line and you hold her down while she undergoes blood work, cardiac testing, MRI’s and other medical tortures?
 
How about if Boo stands in line and you spend some time in Our Land?

How about if Boo stands in line and you do not look at her with condemnation because she cannot control her squeals, muscle spasms and vocalizations when she invades your personal space?

When we traveled there last year I was amazed at how well they took our daughter’s needs into consideration. Each cast member was trained how to treat all patrons with respect and courtesy. We never expected to “cut in line” in front of those who stood in line, but needed to keep Boo in her stroller/chair until the last possible moment.

Just to be clear, in our experience the only “cutting” in line was when there was no feasible way to get Boo’s stroller/chair to the ride through the normal line. We stood in line, like everyone else, in attractions that had a safe method to get her to the attraction. Even when we “cut in line” we did not immediately get on the ride. Rather Disney allowed people who had been waiting to enter the ride and put us on in a reasonable (to me) manner.

When asked if Boo has so many ‘issues’ why would we even consider taking her to a theme park I have the following response: Well, for one, her sister shouldn’t miss out on life events because her sister needs some consideration. And two there is this….

Why shouldn’t Boo get to see the Magic of Disney just because she is unable to stand in line?

I agree there is abuse, like all great plans some fool has to mess it up. But it is not Disney’s fault. The Company really has no option to try and improve on their system. I applaud them for being proactive and for listening to the parents like me.

 
And I hope those who ruined this beautiful experience lose sleep tonight. 

 

The Journey

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Yesterday while waiting for Boo in therapy there was a little boy who was walking around, in his own world and knocking on the walls. He was beautiful. It occurred to me at that exact moment that if I didn’t have Boo in my life I might not have noticed how absolutely beautiful.

I would have looked away.

I would have thought to myself what is wrong with that boy?

I would think, yuck look at that drool.

I would not have spoken to his mom, thinking I was sparing her embarrassment.

I would have been wrong and heartless and selfish. Because I would have thought to myself thank God Allie is ‘normal’.

Thankfully, I have Boo.

So I saw the beauty in the way the little boy comforted himself by knocking on the wall. I looked into his eyes and saw the light shining inside. I recognized his drool and realized it was because he was concentrating so hard. I spoke to his mom, asked how old he was, what school did he go to.

I made small talk.

Not about her son being in different, but how he was the same.

In that moment I was thankful that Boo had made me a mom with special needs.

I remember when I was pregnant and told that due to my “advanced” age my baby was at higher risk for birth defects (hate that word now), Down syndrome and a host of other scary things.

I opted for just the blood test and told God I could handle Down syndrome. But nothing scarier. Why Down syndrome? Not because I knew a lot of about it, but because children and adults with Down syndrome were the least scariest to me. I saw them in the playground, the market, in my life. “It” seemed manageable.

By the way, I realize how arrogant and condescending that sounds. Bear with me.

When the geriatric tests came back negative, I was relieved and moved on with my pregnancy. Then Boo was born and I learned that it doesn’t matter what your child was born with, a trip to the NICU is beyond scary. At that time I thought it was the scariest thing I would ever go through. Boy was I wrong.

It is also enlightening.

Being Boo’s mom has opened my eyes and my heart. I am a better person because I am a card carrying citizen of Our Land. When I see a child (or adult) not acting typical, I do not jump to the conclusion that the child needs discipline. When I see a parent at the end of their rope in the grocery store, I reach out to them.
I learned that by never hiding Boo’s light I am opening our family and friend’s hearts to others in the community. Most of them have now banished the word retard. They are teaching their children to do the same.

My friendships are now more meaningful and important. I have become more vocal and more of an advocate. I have gained friends that I would never have come into contact. I have become more outgoing and outspoken. I certainly wouldn’t have begun blogging. Blogging opened up a whole new world of laughter and support.

All because of Boo.

Do I have moments when I wish that Boo had been born “typical” or with what I thought I could handle? Sometimes, but only because then I would have a tour guide who would know what path to take.

Yet I wouldn’t trade this undiagnosed journey for the world.

 

End of summer

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This is, by far, the easiest post I have ever written. Boo has struggled since her first year to overcome sensory issues. She doesn’t have a severe disorder that impacts our daily life. Jen Kehl can tell you more about that.

We are not alone in our navigating how to expose Boo to the sensory input she needs while balancing her innate fear. If you are a visitor in Our Land you will see a lot of other examples of having a child that is afraid of hair.

Boo doesn’t so much suffer from her sensory issues. It is more like she avoids them and it is easy to do so. For example, snow. We do not have a lot of it, well except when Nemo killed our February vacation. Grass? That was the best defense against Boo’s bolting. I really was kind of upset when she overcame that fear. 

Boo still has issues with a lot of sensory input. Be it noise, texture, smell or sand. Boo despises getting her hair brushed, as one example. She has a paralyzing reaction to sand. You can feel her heart racing, she whimpers low in her throat like a cornered animal. With a lot of therapy during and after school, Boo worked really hard to overcome her fear.

The difficult part of this is that Boo doesn’t realize she is afraid. She doesn’t have that comprehension. She only knows that she “no like”. But we live surrounded by the beach. This was one fear, unlike snow, that she had to overcome.

Selfishly the rest of the family really enjoys the beach. In truth, we kind of forced her to like it. The first few attempts were horrid. But we persevered. Every time we got to the beach she would whimper. We forced her out of the Jeep a couple of times over the summer. She would sit on my lap, but eventually (sometimes it took hours) she would stand on the sand. We kept it easy for her, always in her sneakers. Never forcing her to do more than she could.

And then, my friends, Boo danced. 

This is how I finish the sentence, My best summertime memory this year was Boo dancing on the beach.

 


(Gosh I hope the video works) 

Now tell me, what was your best summertime memory this year?

Finish the Sentence Friday

Mike never met Boo

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Yes, it has only been 48 hours since my bright idea to emulate Mike and Carol Brady. Funny it didn’t take a half-a-year for me to begin failing. I know, you want to pat me on the head and say give myself a break.

But truthfully I sometimes wonder where the brakes are.

Boo has been out of her school program for just over a week. I thought going away would be a great idea. We went camping and instead of camping we dodged rain storms. Being away set off her bowel issues.

Which I was prepared for, seriously, I have enough meds to rectify either option: Hazmat or Obstruction. What wasn’t I prepared for was Boo’s regression to happen so quickly. Only two days home from vacation and she is no longer feeding herself, not going to bed without screaming for over an hour (whomever said that children cry themselves to sleep after 10 minutes never met Boo) and having frustration issues.

I just do not know how to calm my child. First she wants her shoes off. Okay, I can do that. Then she screams, bangs her head and throws herself to the floor because they are off. I swear she made her head spin. Maybe it was mine.

www.goldderby.com 

I caved and put them back on. Nope, she wanted them off. Then on. Then I want a cookie (her, I wanted a glass of pinot grigio–there was still some left in the box). I decide to put on therapist/mom hat and employ the ABA therapies. She wants the shoes off they stay off. She can’t decide between Oreos and goldfish? She gets her first choice even if she runs away asking for a donut.

I’m done at this point. Mike is nowhere to be found. Carol, well I don’t have her hair or patience. So I put on therapy hat…we will by all that is Holy employ ABA. If she wants her shoes on, then they stay on no matter how she screams. She wants cookies? Then she gets her first choice, even after she walks away screaming.

The icing on the cake? Allie comes up to me and says:

Is it times like this you wish Boo wasn’t Boo?

And I break, again. I channel Carol and explain, it’s not Boo that is the problem. It is that Mommy doesn’t know how why Boo is screaming. Why Boo can’t decide between shoes on or off.

Mommy just doesn’t get it sometimes.

That Allie or Mom or Dad can’t “fix” this, we just have to try anything that may work. That I have to put up with behavior I would never allow Allie to get away with. That Allie sees that Boo gets treated differently by her parents. That we have two children that we have to treat differently.

That is not Boo’s fault or really mine. But that whole Catholic guilt thing…with an added dose that as a mom we are not doing quite enough makes me wonder.

Why

Why don’t I have the answers. A mom is supposed to, right?

Why does Boo get so frustrated?

Why can’t she use her words?

Why am I so whiny. For Cripes sake my child has words, and can walk and can show her frustration. There are so many parents out there with less.

Why, oh why must I be down?

Why the freak can’t she realize she is supposed to sleep alone. Yes, she slept in my arms for a weekend camping. But that’s over now. Why does it take five nights to undo two?

Why if I have to be Carol is there not an Alice? I mean, seriously people do you think Mike and Carol would have been so calm without their Alice.

Just think how much easier life would be with Alice.

There would be pork chops and applesauce. That I wouldn’t have to cook or force Allie to eat.

Alice knew that the one thing not to stomach was a perfect kid. Although I wouldn’t mind that perfect kid for an hour or two.

Alice knew that a five letter word for exhaustion was ALICE. Another good choice would be MOMMY

Alice, when asked an unanswerable question would reply if the right answer meant a trip to Europe. I wonder if the girls would have to go?

Anyway, I kind of got off point (are you still out there), is I wonder if this gets easier. I thought Boo’s first days in the NICU were bad. Then I thought, when she threw up everything I put into her, that this was the hard time. Then and then and then….there are a gazillion times I thought life would be getting easier.

Then there was summer break.

And sleepless nights.

Wondering if I am every going to get being Boo’s mom right.

And so thankful, from the bottom of my soles, that Boo is back in school on Monday.

There better not be snow.
 



A moment to say WOW

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I know that Boo is so incredibly lucky. Yes, she struggles. However she struggles so much less than other children. And here is why:






Boo you see has the best, ultimate best, village. Not everyone of her village is shown in this photo. The people above dedicated Sunday to walk with Boo in the NSTAR Walk for Children’s Hospital. We formed our Brigade 5 years ago to show how much our family was indebted to the Saviors who saved Boo’s life and our sanity.

Five years later, CHB continues to care for the best hugger in the world. However we do not owe Boo’s advances to just CHB. She owes her growth to the friends, family, therapists and teachers who interact with her on a daily basis.

I read so many blogs where I am saddened that they do not have a village. So many moms feel isolated, alone and afraid. Too many parents of children with special needs become loners. Their lives are centered around their child, leaving them little choice.

Maintaining a village is not easy for a lot of us. We are pretty out there with Boo and have been since her birth. I know the present is the easy period. As she gets older life may become harder. I think that is why our family is so grateful for our village. 

Boo’s teachers, aides and therapists have become extended family. Our friends have become watchful guardians when they see Boo in school or at a party. Everyone we know have invested themselves into our beloved child.  Recently I was at the Supermarket and a teenager came up and said hi to Boo. I had no idea who she was, but her friendliness touched me.

So I am taking a moment (or two) of your day to express my gratitude to Boo’s village. Those who walked 7-miles on Sunday and those who cheer her on every minute of the day. Those who read my blog and cheer us on. Those who I work and live along side. The countless people who reach out and hold our hands through this unsuspected life.

Thank you to all of you who share our heartache and joy.

From the bottom of my soul, thank you.