Category Archives: developmental delay

Thanks

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Yesterday was a crap day. For me. Not for Boo though. I wanted to let everyone know that not only did she survive the field trip she enjoyed herself. According to David she not only touched a pumpkin but plucked an apple out of a tree!

I know I wasn’t alone yesterday in my meltdown. Other parents experienced the same emotions I did. They just didn’t spew to the entire world. But I am glad I did. I almost did not post yesterday, fearful that I would offend Boo’s teachers and therapists. Fearful that I would look like an idiot when David took her and Boo did not melt down. Fearful that Boo would melt down and I wouldn’t be there to hold her in my arms.

I want to thank each and every one of you though, for supporting my meltdown with texts, e-mails and comments. I cannot tell you what it meant that you understood. Or if you didn’t understand you empathized.  A friend put it so well, this was a case of mommy guilt at it’s worse. Something we all go through during this crazy period of our life called parenthood.

Since parenthood is going to last for the rest of my life I know that there will be other moments when Mommy Guilt overwhelms me. I always thought Catholic guilt was tough, man I knew nothing before children!!

Including how I never knew that parenting was a team sport. So, thanks to each and every one of you who are on my team.

 
 


I’m taking the easy way out….

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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. 

 

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.

 

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

Wordless Wednesday…Patience

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It took almost two years of therapy. But last week Boo not only went into the ball pit willingly, she went in on her own.

And now we have the opposite problem. Getting her out!

There are heroes and then….

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There are heroes and then there are SUPER HEROES. Those individuals who leapt buildings in a leaping bound, the wonder women with magical bracelets and an invisible plane.

Man, I’d like an invisible plane. That would be super cool.

When I was younger I wanted to be a member of the A-Team. I thought the Colonel Smith was the best, loving it when a plan comes together. Who wouldn’t have a crush of Faceman? I wanted to big brother like BA Baracus (I thought at least one of his necklaces would look good on me). And Madman Murdock? He was just like this Uncle I had…Anyway I thought, as a tween, I would be cool and safe as a member of the A-Team.

Photo credit



Then I grew up.

And I realized the superheroes are not that common. That a plan doesn’t always come together. That you need to sometimes be a BA to get things accomplished. I also realized something else. Superheroes come in all ages.

The woman who hugged another in an elevator.

The father who pushes his son every year in the Boston Marathon.

The soldiers near and afar who put their lives at risk every day so I can sit in my home and drink my wine.

The makers of my wine.

The grandmother who looked at a child having a temper tantrum and told the parents it does get better.

The doctors who saved my daughter’s life.

The therapists who enrich Boo’s life making her the best she can be.

The school teachers who have more patience than Saint Teresa.

The friends and family who answer my HELP ME calls.

The people who run into the emergency rather than running away.

But I do have one SUPER HERO….

Allie.



Who looks at her sister with love and empathy. Who has adored her sister from the moment they met.



The sister who braved multiple hospitalizations to see her baby sister. The girl that explains to other children that Boo has a “funny” pattern in her brain that makes her “special”. The girl who has attended so many therapy appointments that she can run her own.  Last week, after coming home from a sleep over, Allie took the time to go through Boo’s speech therapy:

Boo: I EKRJWORYOWEHFOFJSFROREEEEEEEEEE
Allie: I
Boo: I
Allie: Want
Boo: Want
Allie: To
Boo: To
Allie: Have
Boo: Have
Allie: Cookies
Boo: COOKIES!!!!!

This is a super hero at just nine years old. Allie possess the ability to calm her sister, to hold on while Boo deal with a hazmat situation, who calms a head-banging moment, helps her swing and jump. Allie is the protector and the “mad” girl who cracks Boo up with her antics.  Kind of like the A-TEAM all mixed into one little package.

It helps that she is cute beyond belief.



I hope to she maintains her membership in the hero society. I cannot wait to see how she changes the world.

Who’s your hero?




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A wrap up of the 4th

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The 4th of July dawned bright and early for us. Unbeknownst to David I signed us up for another almost-5k (not quite 3mi but I am fine with that). My goal is to continue having accountability. If we sign up for a race we will have to train and therefore run. Okay, he won’t have to train. That man just shows up and out paces me.

The reason he lives is he doesn’t lord it over me. Instead he has been really good at not letting me slow to a walk. The fact that he left the race course to hose down at a friends house and then sprinted to join me, then ran past me to talk to another friend has nothing to do with my envy.

The race was much easier without pushing Boo. She and Allie hung with Grammie while we ran. I think they had more fun. You see there is a peacock that has overtaken my MIL’s neighborhood. And “Petey” has taken roost in her front yard. In the mind of only a grandmother, she brought the girls outside to see it. I am not talking about from afar either…

I’m glad I was at the race. I’m beyond ecstatic that that Boo didn’t escape with the bird. And overjoyed that the bird didn’t eat them. Are peacocks carnivores?

After the hot and sweaty race we picked up the girls and my MIL (leaving “Petey” at home) to attend the town parade. Boo did really well, waving and saying hello to all the floats. As long as the antique cars didn’t honk their horns she was happy until….

The muster. Every year our town’s fire fighters put on a muster for the kids. They fill the school field with foam and allow them to slip and slide all over the place. The kids have an absolute blast. To show you “the foam” that the families look forward to…




 

 The kids line up to be under the foam cup.














Allie showing that she is her daddy’s daughter in the thick of things!







It doesn’t matter how old you are from toddlers to teens to seniors…everyone enters the foam.

 
 
 To every parent’s joy the firefighters also set up a wash off station.
 
 
 
 

But these photos are from last year. Because this year, Boo was terrified of the foam. She refused to leave my arms. She was wrapped tighter than a boa constrictor. Last year:

 
This year?  In truth, I was saddened by this slight regression. That we have no photos, that she didn’t enjoy herself. That Allie can’t play with her little sister as the other kids were enjoying the day. Yet once the foam was gone and the hoses were put away, Boo was the happy little girl who loves to give hugs. Of course, the teens had to dry off first. But they were all so patient with her, chasing her around the now clean field.

When I think of all the strides Boo has made in the past year, the fact that I have no photos of this year’s foam is bearable. This Independence Day Boo is still growing. Yes, there are regressions. Especially being out of school.

Yet Boo still amazes us. She is now independent in taking her shoes off. She can unzip her lunchbox. She can drink from a cup and can find Austin & Allie on her IPAD. Boo is engaged in her life.  Once the field was back in her comfort level, Boo was interactive with the children.  She tried to climb on the fire truck. Boo was there in the moment. 

We might struggle finding out why she is frustrated or what she is feeling or why she shuts down. But in two cases we know this for sure Boo has clearly told us what she doesn’t like. Snow and Foam.

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.