Category Archives: sensory

I will gladly stand in line….

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.

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?

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.

When the Rain God’s laugh (at your expense)

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When you plan a vacation six-months in advance you know you may be taking a chance. You never know if there may be a birth, death, taxes, etc… When you plan a camping trip six-months in advance?

The Rain Gods chuckle.

Out loud.

Seriously they laugh harder than a virgin at a George Carlin concert if he was still alive. Wait, he might be one of those rain gods.

Can comedians become Gods? (and yes, I am secretly worried about God’s thunderbolt right about now–Rich do something!)

Anyway back at the camp….In February we made our camping reservations. With the economy tanking the State Campground we usually go to gets booked in 12.5 seconds if you are not careful. Okay, probably not that fast but the past two years we have been out-booked by waiting until April to plan our vacation. This year we would be successful and not only camp but camp at our favorite site.

The day before we packed the camper to sun-filled skies. The morning we left it was 59 freaking degrees and drizzle. By the time we arrived at our camp site 8 hours later? It was a monsoon.

But we persevered. We set up the camper and immediately cracked the box of wine. Hey, I was roughing it.

Allie thought it was great (you cannot hike if the rain and mud is pushing you back down the mountain) until she realized she also could not go swimming or play in the waterfalls. However the Whoopie Pies we bought in town helped (yes, I gave my child Whoopie Pies for dinner).

Boo on the other hand had a more difficult time. It is hard when a child does not do well with sensory overload has to sit in a camper as the rain pours and pours down on top of the tin roof of a camper. Then the thunder started. And well…sleep isn’t something a parent really needs.

The upside was we had a vehicle and cash. This is what I learned from three days in a camper with no electricity and a lot of rain:

Wet dogs really do smell.
I am willing to travel 3 hours in rain storm for lobster
The upside to a monsoon is that you do not have to cook over a fire pit
The downside no camp fire to ~~drink by~~ roast marshmallows
You can charge an IPAD in 3 hours while driving around looking for lobster
I do believe that the Chamber of Commerce pays off the weathermen for inaccurate forecasts.
Reading on my Kindle is a sure fire way for Allie to say, Mom can I play a game on your Kindle my IPOD died.
If you do get your Kindle back, you cannot read in a camper with two children, a dog and a husband who are “bored”.
If needed you can spend 30 minutes ~~hiding in the shower~~ hitting the button that allows for a 20 second spray in the campground shower. (I recommend bringing the box of wine with you).
I am glad I decided that I want to parent like Mike and Carol after this trip and not before. PSA–do not put yourself in a situation sure to make you sound like Rosanne.
A husband can literally sleep through anything (no offense to the men out there. But you know I am right with this one.).
There are such things as mosquitos as big as my head.
Pack extra wine.

I know for sure that the Rain Gods laughed their thrones off at us as the sun came out just after we packed the camper to go home. And I laughed as I went to work on Monday morning and left David to clean the camper, the girls and the dog.

The day we tortured Boo

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We are surrounded by the ocean/beach. How we had Boo, a child terrified of sand and all that is beach is still a mystery to us. But we are determined to make her a beach bum. Every summer we take her and in the beginning it is horrible. But last year for the first time Boo stood on the sand! It took crocks, socks and a pretzel stick. But she did it!

It took a lot of work for her, but we were all so proud. This year Boo walked on the grass so I (mistakenly) thought she was ready for the beach. Sure she freaked out at home when I took her socks off and made her walk barefoot. But it will be great, right? We put the girls in the jeep and drove onto the beach.

Big mistake. I swear it was the windiest day of the year. Boo did not handle it well. The poor thing whimpered for an hour. We tried everything. Including hiding her under a blanket.

Unfortunately we choose the windiest day of the year for her first attempt. It was so bad a friend left because her husband was being so cranky! At one point we looked down the beach and thought it was fog, but nope it was sand from the dunes.

You can see her trying to be brave. She was watching Allie have fun and but didn’t realize Allie was having fun. She thought the waves were hurting her sister.

But in the end, after about an hour, we finally gave in and packed up to go home. All we heard was “I no like” (hey a sentence). Once in the jeep life was calmer. For the first time she didn’t panic in the jeep at the beach.

So progress was made.

Then today we got the notice that the beach is closed through most of July due to some endangered birds. Apparently birds take precedence over summer fun.