Fall is here. Time for apple pie, apple cake, apple sauce…if we get the apple out of Boo’s hand!

In New England we have an expression, if you don’t like the weather just wait a moment because it will change.

Last week it was still summer. Yesterday it was spring (Allie wore shorts to school). Today it is freaking freezing! As sure sign that summer is over? Boo woke up this morning with blue hands and feet. Thankfully, not the first time, so no worries.  We have battled this for the past couple of winters. Right on contact, they pinked right up.  

The bad news? I had a mad scramble to find her fleece.  The good news? I didn’t have to check the weather report this morning. Boo is more accurate anyway!

Last night Boo had an epic meltdown. Not just last. Her entire day was off. It as my fault, really. I posted recently about the weekends with company, then going to see the grandparents, then having to go to her appointments rather than school. So she was already not up to her best. She fell asleep on the way home from school yesterday, exhausted. Boo had been waking up crying in the morning and crying herself to sleep. Not her normal. I know she is constipated and is going to take a couple of days to get back to sleeping on her own. Boo loves her routine, she just needs time to get back to it.

So, why oh why did I decide that today was the day for her to wear new shoes?

Boo wears sneakers (when she is not throwing them in the fire or out the window). Boo does not like to wear shoes at all on her left foot. So why would I, when we were already late for school, decide to not only put her in a dress but new shoes?

Because I’m an idiot. That’s why!

Needless to say the morning was not fun. Boo was screaming and banging her head uncontrollably. She threw the shoes at my head. I finally got her calmed down and Allie proclaimed:

Boo had a tough week, so far. This weekend was wonderful, visiting my parents. The girls were spoiled for the short time we were there. Even though we were only gone for a couple of days, it was enough to mess with Boo.

To add to her difficult week, yesterday not only did she have to travel 3+ hours to Children’s for a GI check-up afterwards she had to take Allie to an orthodontist appointment. After spending 12+ hours in the car driving home from being spoiled, to spend 6+ (round trip) hours in the car then have to pick up Allie and just to sit in another waiting room for Allie was a bit much to ask of her.

While in the orthodontist waiting room, Boo was….shall we say….exuberant in her joy over a book of puppies.  I don’t think the receptionist or the other families in the waiting room have ever experienced such exuberance. I was just happy that Boo was in the stroller (although I had a funny moment when I imagined their experience of an unconstrained Boo). Rather than being embarrassed I was so proud at how Boo was labeling the things in the book. Okay, I was embarrassed at the volume of her expression. But I was proud too 🙂

When it was time to leave, I asked if there happened to be a handicapped entrance/exit. Allie and I had to carry Boo’s stroller up 5 steps to enter the office building. The look of utter surprise from the receptionist face was priceless. Turns out, the building is not handicap accessible. Something that would not have occurred to me pre-Boo.  Now we are lucky, I could have either carried Boo into the building or she could have walked. But that would have meant that Boo would be racing around the office (as would anyone after spending so much time in a car seat). So instead, Allie helped me get the stroller up and then down the stairs.

As Allie and I were carrying Boo’s stroller back down the stairs she commented on how Boo was so loud, she could hear her way in the back of the office. I asked if the doctor said anything about it, here is Allie’s reply:

They asked if the person making all that noise was Boo and I said yes.  Then they said, wow she is really loud. I told them she was special needs–just deal with it.

Any embarrassment I may have felt faded in that moment.  Allie is right, we have to deal with their building not being handicap friendly and they just have to deal too.

Boo is very lucky to be a patient at Children’s Hospital Augmentative Communication department (one of her many specialists!). In honor of Down Syndrome’ Awareness month. Rebecca Therriault, SLP of the Augmentative Communication Program for this handout on Visual Schedules with a focus on supports for Children with Down Syndrome.


I am not adept enough to post the schedule here. But I recommend liking the CHB Augmentative Communication Program on Facebook where you can download a copy of the schedule to help with your child.


Boo’s school uses a similar schedule for her day. I have not attempted it, yet. After all we failed miserably with PECS! But this is so cool. Because I am totally inept, I tried to put it here for you to see:

I am hoping you can see Rebecca’s work. You can tell that she really thought out the best way to inform the uniformed how a visual schedule works. I am definitely going to try it. If it works, I will have Boo’s ACC SPT thank Rebecca for me. If not, I will never mention it at all at Boo’s next appointment :0

Sleeping in on the weekends.

Girls night out.

Wearing high heels.

Getting massages.

Having a clean house. 

Because they will ride the carousel as long as Boo wants!

These are the moment when I know there is no love like Allie & Boo

Hoping you have a peaceful weekend and remember….

Did you happen to read the Love that Max post yesterday? Ellen writes (beautifully, I might add) about the “R” word. From those that sell apparel with the word to the recent article in the NY Times.

Today, I was looking up something about Down Syndrome for the 31 for 21 challenge. And look what I found on About.com under Myths, Misconceptions & Facts about Down Syndrome:

“FACT: Most people with Down syndrome have only mild to moderate mental retardation.”

Um, Fact? I don’t think so! First, while people with Down Syndrome may have intellectual disabilities. They are not IN FACT retarded. Now, in all honesty the website that “most” Down Syndrome children have the ability to learn.

I am not making this up. It is simply amazing the misinformation out there!

The truth is, like all children, those who have Down Syndrome are not clones of one another! There are differences among all of us. The same is true with Down Syndrome, those with severe cardiac disease and those with mild. Those who need glasses and those who don’t. Those who are potty-trained at 3 and those who are not.

Hmm…sounds like Down Syndrome should not define the child.

The scary part, to me…is this “fact” is on the web. On a popular website that I am sure a lot of people may use for their information. Imagine Allie deciding to do a report on Down Syndrome? Sure, she knows not to use the “R” word. I am more concerned about another student (or parent) finding this “fact” and not knowing it is fiction.

But there is also guilt. I was one of those idiots who used the word as a noun. When Boo was obviously delayed and we met with the neurologist I remember asking, does this me she is retarded? (In New England we say RE-TAH-DID). I wasn’t trying to be politically incorrect, hurtful or worse. I just did not know what the proper term was supposed to be. I was ignorant.

Now I know, the power of words and how they hurt.  It took Boo to show me the power. It to Jillian, her friend with Down Syndrome to show me that not all kids with DS are the same. 

So while the only way to combat ignorance is with knowledge, I see a nasty e-mail to About.com in my future!



Proud to be participating in the

It’s been a tough week. And it’s only Thursday. 

We have had company the past two weekends. This has led to disrupting Boo’s routine. It happens every time. She is good while the company is here. But not sleeping in her room and having her routine interrupted leads to sleepless nights, constipation and general fussiness.

Company doesn’t understand why Boo must go to sleep in her room (still our guest room) and then be moved AFTER she fall asleep. They do not understand that Boo cannot fall asleep some where else. They also don’t understand that I cannot let them sleep in. Well, they can try. But Boo is pretty loud and her voice kinds of echos when she is excited.

Then Joey died. Allie’s pet beta fish. I don’t know why it surprised me. He was trying to hang himself for days in the plant roots. Joey was cool because he was low maintenance. Clean his bowl once a month and feed him once or twice a week.  Allie had kind of forgotten about him. But “fish” was one of Boo’s first signs and she loved him for awhile. But I think I am the only one who misses him. 

Probably because he was the easiest family member to take care of!

Which leads me to crazy puppy. He just turned a year and has forgotten all we have trained him. He just woke up wild this week. I think the company disrupted his schedule too.

Work has been nuts. Remember that co-worker whose “emotional plate was full“? (I still love that line). Anyway, she gave a week’s notice. She is leaving to take care of her sick mom. I find this admirable, if a little confusing. In this economy how some one can quit a good paying job with benefits, is beyond me.

I also feel guilty. Because I am not quitting my job to take care of Boo. I haven’t ever really considered it. Oh, I’ve wondered how I’ve KEPT my job. With all the time off for appointments and crazy hours to attend most of Boo’s therapies. It’s a wonder and I am very thankful for an understanding boss and coworkers. Now and again I have tried to cut back my hours. The job just doesn’t allow it. They are flexible, but at the end of they day the job has to be done. 

But in truth, if not for my job I would lose my sanity. Or be spending a lot more time with Pinot Grigio. I wonder how people do it. First on one income and second on the whole sanity factor. 

To top it off, the thing that put me over the edge…my mom wants us to bring the girls down for the long weekend. It is not the 12-hour thru the night drive that is bothering me. We do it all the time (it is much easier to travel that way). It is the thought of another weekend, a weekend I thought I could actually relax, being taken away from me. The thought of completing disrupting Boo’s structure. Of her missing her Yoga session. Of knowing that she will be sleeping in my arms for 2 nights which means when we come home I have at least 5 nights of misery until she readjusts to being home. Of her diet being off because you are on a pseudo vacation. Of my husband missing much needed over-time because it is a long weekend and a lot of guys are off. Of Allie having to miss her Pony Club. Something she has been looking forward to.

I always think my mom gets it. That Boo is harder than she seems. That Allie is getting older and more involved in weekend activities.  But her understanding is trumped by her desire to see the girls. And since mom is the best ever, you know I will be traveling thru the night this weekend. For two days to drive back thru the night to make her happy. Because my mom deserves it. 

I’m going to miss that fish.

 
Don’t forget: