Category Archives: school

Challenges related to a disability

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Last week I was late and well, I’m still technically a week behind the postings. This week’s prompt in the Summer Blog Hop Challenge: Talking Raw, Talking Real: Challenges Related to a Disability. 

I kind of wish Boo could write this post. Or Abby. I bet they would say, Challenge? What Challenge?

The truth is, though, loving a child with a disability doesn’t mean you do not see their challenges. They are pretty out there. If you see Boo you might say her challenge is communication. Or motor planning (then you didn’t see her climb on the counter and remove all knives from the strainer to get her Sophia cup). 

As I am unsure how Boo would perceive her challenge, I will explain how being a parent of a child with a disability presents a unique situation. 
The true challenge related to Boo’s disability is that sometimes I am not sure if I am dealing with her disability or if I am dealing with toddler-like behavior. I waffle with pushing too hard to not pushing enough. I make allowances where maybe I shouldn’t. 

I wonder when I pick Boo up and carry her am I doing it for her safety, because she cannot walk that far or am I doing it because it is just easier?

Searching for schools, daycare centers, camps…a whole other challenge. Recently I was talking with a friend whose son has a cardiac condition. She was sending him to “real” camp for the first time. Not a special needs camp. Not a camp that was prepared to deal with health concerns. When you have a child with a disability every decision you make is important. In P’s case if her son has a cardiac event will the camp be prepared with how to help him? In Boo’s case if we decide to send her to camp will they understand she wanders? That she has a sensory processing disorder which may make activities difficult for her. That she turns blue if chilled and red/clammy when overheated. Each decision we make has direct impact on our child, the other children in the school/daycare/camp and their caretakers. Unlike Abby where I basically drop her off in the morning, P will have to make sure that she reiterates every day what to do in the event of an emergency.

That is something a parent of a “typical” child never ponders.

We worry more. Sorry, but we do. I worry more with Boo than I ever do with Abby. Every decision we make we have to balance on: is she safe, is this challenging enough, does she have enough support? I research every activity she does before it happens. 

Abby? Not so much. She wants to start riding, okay let’s go to XYZ barn. I knew nothing (and still do not) about horseback riding. I didn’t even know we should choose a style. Boo on the other hand? I never would have allowed her to begin riding without doing a few hours of research on the best type for her skill level.

It is hard to define the true challenge as it relates to Boo’s disability because she doesn’t have just one disability. Our challenge becomes balancing working with her disabilities while determining what is typical behavior. 

Even if it means we worry more.

It hasn’t happened yet

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Yesterday was preschool graduation. For the third year in a row I did not attend. As I was leaving another mom said, oh are you too upset to stay? 

Truthfully, no. Cause it’s year three and she will be going back today. She will take a one week break and be back the first of July. Boo does not get summer vacation (thank goodness) and she will not be moving on to Kindergarten in the fall. It is not meant to sound harsh or like I am upset. I am not sad at all that she is not graduating with her peers. I am overjoyed. Heck I am thankful that we are not facing Kindergarten next year.

I’m doing the happy dance.


You see, Boo has the best and I mean best ever pre-K teacher. One that loves and cares for Boo in a way that makes my heart ten sizes to large. Miss Trisha is the reason Boo was enrolled into the special education program. She is the reason Boo has made such significant gains. Miss Trisha is the reason Boo was included in the best ever ABA program headed by a team of professionals that but the child before anything else.

I am consistently amazed at Boo’s willpower and progress. Three years ago when she entered the pre-K classroom she had (maybe) 10 words and 20 signs. Now she shouts MISS TISHA OME ERE.  When Boo was screened for the pre-K program she was using a pediatric walker. 


Today she jumped around in a circle with her friends. Yes, she danced while they walked around in formation. But she was present. She was in the moment. She was having fun. This is the year Boo made friends. For real. Friends that invite her to birthday parties. Friends that do not let her sit on the sidelines and just observe. Friends that taught her how to play tag.  Friends that on a field trip at the Zoo make sure she keeps up. 




Not only did she help Boo up she celebrated afterwards











This marks the first field trip I attended with Boo that I did not cry afterwards. Afterwards her teacher asked if I was okay. Because to Miss Trisha all of us are her responsibility. 

This year Boo made friends. As in more than one. Ones that will keep in touch and be a part of her life for a long time to come. Girls and boys who play with her not along side of her. Children who run to hug her in the morning and interpret her language when there is a new child or substitute therapist. 

But for the first time the pre-K non-graduation makes me wonder not worry about what September will bring. How many more milestones and leaps she will make developmentally under the love of Miss Trisha? It is breathtaking to imagine.

No I did not attend Boo’s pre-K graduation. Because it hasn’t happened yet. I will be there in the front row when it does. But I plan on that not happening until Miss Trisha retires. 

Somewhere around Boo’s 18th birthday.






Throw Back Thursday–Friendships

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts.  I hope you enjoy the trip back in time.



Throw Back Thursday, blog style


(Originally posted 26-JUL-2012)

Today I am amazed. Simply amazed. I brought Boo to school and she went right up to  a little girl, called her by her name (Boo’s version anyway) and they hugged. 

It was an awesome sight. Boo interracting with another child. Even more awesome, this little girl hugged Boo right back.

Then Boo called one of the teacher’s by name (again, her version but definitely the person’s name) as she passed by. (to be honest, I don’t even know the woman’s name!). She then saw another teacher and clearly said her name (this one I knew!).

The utter joy in Boo’s voice and expression was worth all the worry about this new school program.

There was month’s of anxiety leading up to the new school program. Originally the public school put Boo into an integrated preschool feeling that is all she needed. No one listened to us about her needs, etc… They would not give her an aide and did not start her therapies as directed. Thankfully the teacher in the program is simply awesome and took care of the aide herself and helped us advocate for the services Boo deserved.

In the Spring the teacher recommended a new program, a half-day in the preschool and a half-day with discrete (1:1) program that is dedicated to children with special needs. Those with CP, Downs, autism, undiagnosed like Boo. Okay, she is the only one “undiagnosed” but still the program seemed ideal.

Except I was beyond worried. I was afraid she would regress, that we wouldn’t have the communication we had when Boo was in Montessori.  You name it, I worried about it.

The first week was tough. It didn’t help that they forgot to feed her the first day.

The second week was less scary. It didn’t help that they lost her for a little bit.

The third week was without mishap so our fears were slightly less.

The fourth week, Boo met a friend and knew a teacher’s name.

The fourth week ROCKS!

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

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Last week there was an article in our local paper titled, “Special Education costs blamed for (school) layoffs“. Lucky for Boo this is not her school we are talking about. However it struck a chord. Why must we pit one against another?

Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.

I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs.  


Probably because this is the first time I have had a child in the “special education” cohort of the school system.

Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.

Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community. 

But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot. 

Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom? 

Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.

But who should pay? That is really the question and you are probably not going to like my answer.

I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other.  Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.

Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff. 

There are a lot more students taking electives than using the special education department. 

I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.

However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.  


Got humor?

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How to survive life as a parent with special needs. Okay that is a lofty goal! It is hard enough navigating parenting with a child who is typical. Add in a few diagnoses and life can get overwhelming. But here is my go-to list for surviving the life I never expected.

1. Keep your sense of humor. If you have lost your sense of humor because it was drowned by vomit, poop, tantrums or tears Google comedian Steven Wright. How can you not chuckle at thinking: “Is it weird in here or is it just me?” (Steven Wright)

2. Make a daily goal. For me it used to be brushing my teeth at least once a day. Now it is making sure I get to work without evidence of Boo’s breakfast on my shoulder.

3. If you feel all alone in this life as a parent with special needs, you probably are. But it is your job to find support. To scream at the top of your lungs I NEED HELP. If no one hears you, let me know and I will add my voice to yours.

4. Make your child’s teacher/therapist/doctor your friend. Find out about their lives. Interact with those who your child spends most of their time. It will enrich your life in ways you cannot imagine and make issue #3 far less likely to happen.

5. Have a glass of wine. Not the bottle a glass. 

6. Allow yourself to cry, laugh, grieve and rejoice all in the same minute. It doesn’t mean you’ve lost your mind but that you may have found it.

7. Find “ME” time. I know, I hardly ever do. But when I can run for just 30 minutes I come back a much nicer wife, mother and person. It doesn’t have to be every day (oh how I wish I could find me time every day) but make time for you.

8. You hopefully have a partner. The child’s mother or father. Guess what, they are your partner in this and they too are parents with special needs. So lean on them. Consult them. Do not do this all on your own and remember that partner is there. Make them take your child to therapy, a doctor’s appointment or do drop-off at school. For too long of a time I tried to be super mom, handling everything for Boo. Once I let David in our lives were much easier. If you don’t have a partner look at rule #3.

9. It’s okay to wear your sweat pants with a hole in the crotch for a few days in a row. Just try to remember to wear underwear so you are not arrested for pulling a Miley Cyrus at school drop-off.

10. Mix-up your friends. Try to anyway. Keep a healthy mix of parents with special needs and those with that normal kid who just talked back to them. It will make you appreciate your own little wonder. It will also help to make sure you feel alone.

11. It’s okay to get pissed off. Seriously pissy at this life you didn’t expect or prepare. And once you think you’ve got it handled someone will take the rug out from under you. Consider yourself warned. It is okay to question yourself, your God and your child’s doctor. It is not okay for any freaking one to tell you that you are not allowed to feel anger, grief or whatever emotion you may be going through.

12.  Your house doesn’t have to be Martha Stewart Spotless. I will say the state of our life is directly reflected in the mess state of the kitchen. But I have stopped saying to people, sorry for the mess. Instead I say, This is how it always looks and today is actually better.

13. Remember you are more than a parent. You are more than a parent of a child with special needs. You are you and may I say you are doing a fine job of navigating this life the best you can.

Lastly, and this is important: Five years into this life as a parent with special needs I will say this is our life. What we make of it. A glass of wine helps. But what really makes me survive?

The friends who have stood by to hold, comfort and more importantly laugh with me. So find some of those and keep them close. They will help you keep your sense of humor and your sense of self.

Different choices

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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.

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.

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.

 

Remembering the parent

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I’ve been really hesitant to write this post. First, I hate to jump on a bandwagon. I also hate being late to a party, even a pity one. Mostly, though, I do not ever want to come across as ungrateful or one that complains.

Truthfully, I have absolutely nothing to complain about. I am beyond lucky. I acknowledge that my situation is as wonderful as it is rare. I have a terrific village who supports my sanity. When life gets overwhelming I have some one within a text, an e-mail, a call or a walk to lean on. I get date nights with my husband and girls night in.

Not everyone is this lucky. They are isolated. They stay at home with their child, change how they go to Worship, do not attend family events, cannot find a babysitter and not even think about getting a pedicure. Moms like Kelli try to do everything right. They think that it is less disruptive for their child to stay home. They feel family gatherings are too hard to keep everything together and peaceful.

I do not know Kelli and only know about her circumstance from Julie, Jill and Kristi’s blogs. But I do know that not every child is like Boo. Some children with special needs are violent. They hurt themselves and those who love them the most.

When Kelli tried to kill herself and her daughter there was a lot of condemnation.  People have a difficult time understanding suicide. Let alone a mom who tries to harm her child.

The sad truth is, Kelli is not the only one out there. Statistically children in the US with special needs account for almost 10% of those who are abused. And they are abused by their caregivers. This is not just the US. World-wide disabled children are harmed more often than typical.

This is just supposition on my part, but I believe the abuse and the killings and the suicides happen because the parent has little or no support. We are very lucky where we live. Our Boo has a terrific school, afterschool therapies and if she was autistic we would be eligible for in-home support. But those therapists and teachers deal with our children hitting, spitting and hurting them. Yet they love our kids. They want our children to succeed.

Parents and caregivers are becoming the walking wounded, suffering from post-traumatic stress of living and working with a child who punches, kicks, sets fire to the house and destroys relationships. We love our children. We hate what their disability makes them do.

There is a difference.

There is also a reason why persons who work with children and adults with special needs have an extremely high burnout rate.

While our children in the US have a tremendous amount of government support available (if you know where to ask) for them, there is zero support for the caregiver. I am not talking about financial. I am talking about emotional support. That shoulder that you need to lean on.

Since I have that support I know full well what those of you without it must be feeling. Know that you are not alone but you have to let us know you need it. My friends know because I go to them. I break with Boo’s therapists and vent to her aides. Sure a few will reach out, but the responsibility is mine to say I cannot do it on my own.

So I implore you, the Kelli’s out there, to know you are not alone. But you need to scream and raise the white flag.

And if you know a parent out there with a child who has special needs reach out. Stop by their house tonight with a pizza and a bottle of wine. Stop by and check in on them. Keep inviting them to events, even if they have to say no. Remember that e-mail is great, but you can hide there. Call, speak to them. Make sure they know you are available to listen without judgment.

Let what happened to Kelli be a lesson to all of us to reach out before there is no one there to catch.

 

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.