Monthly Archives: March 2013

Five minute friday…or 2 posts in 1 day I am adventurous like that

Lisa-Jo Baker started a 5-minute blog writing funcapade I don’t know when. I always thought I would join, but never have. Until I saw today’s thought and laughed out loud. So here I go 🙂

Today’s prompt: REST

Why is rest so funny to me? Because I don’t remember what it felt like. Seriously, this week alone:

Monday–Boo was up all night with her stomach issues
Tuesday–Husband was in and out all night on Fire calls, making the puppy go nuts each time he came home
Wednesday–that puppy? Well he managed to eat FIVE of Allie’s toys including: a clothespin (why she had one I still don’t know. Seriously didn’t even know we had one in the house), a Barbie, a block, a brush (bristles and all) and a maraca. Yes, a maraca. He then proceeded to throw up every 2 hours until 6am. And guess where Hubs was? You guessed it: FIRE STATION!
Thursday–Allie got a pallet expander. I thought all was well. Sure she was a little swollen but who wouldn’t be? Until 3AM when she woke up in pain. Rather than really deal with the pain, I let her crawl into bed with us. Guess who was home? Right, husband. So why do mom’s always end up in the middle of the bed, getting kicked, drooled on, punched and I don’t know what?


And this was just this week. Put that over the past 4 years with Boo (sadly, cannot blame Allie she is usually my champion sleeper) and I think the last time I ‘rested’ was before I had grey hair.

Now check out the rules and go visit the host for 5 minute friday below!

Five Minute Friday
Go link up now 🙂



I did something really stupid once….

It’s Friday and I am joining in on Finish that Sentence. And this week’s starter is “I did something really stupid once…”

Well, how to attack that one? I mean, I would love to say I did something really stupid ONCE. But let’s face it, my track records is really not the best. To say I did something stupid once would be an understatement.

After thinking about it, and not for very long, I realized I usually do something stupid when a party is involved.

There was the time when I arrived a half-hour early to my surprise baby shower thinking I would help the host set up for her housewarming party. I arrived before most of the surprisers! Last year, I took Allie to a birthday party, knocked on the front door and the mom answered in her pajamas to tell us that the party was the next day.   More recently, last weekend I took Allie to a birthday party. We arrived at the location and we were not just 15 minutes early, but a week! Thankfully it was not at the person’s house but at a gym. I thought I was in the clear until the next day at CCD she told her friend, guess what my mom did AGAIN…..


Now make sure you join in. I cannot be the only one who did something stupid once, I mean twice or thrice!!! And as a note of caution, may I suggest double checking the invitation to a party before you leave the house?


Finish the Sentence Friday
 
Be sure to visit the hosts at:
 


Making it all come together

Yesterday at speech therapy Boo was in a mood. Not a bad mood, but a mood. She didn’t really want to participate in speech. She wanted to move around. Thankfully our speech therapist  “C” is awesome and quickly tuned in the best way to make the 45 minutes productive.

They moved to the floor, where Boo could lay/flop/jump/sit on C’s lap. Was Boo really focused on speech? Nope. But C was patient and demanded that Boo not only interact but follow thru in using her words to request.

Of course it got me thinking.

Her other therapists don’t do that. We went from speech to occupational. Where the therapist worked wtih Boo but didnt’ make her use her words. Then onto physical where again, the therapist worked with Boo but didn’t make her use her skills from OT or SPT. And in reviewing the afternoon, “C” didn’t make Boo use her OT skills (unless trying to eat the playdough counts as OT skill).

I’m not short-changing any of the therapists. I adore them all and am always so thankful for the love and attention they show Boo. But….

Wouldn’t it be more effective if the insurance company would allow them to co-treat? Instead of spending 3 hours in therapy (after spending 8 hours in school) working on different skills, wouldn’t it make more sense to have the therapist work together?

We did get authorization for one co-treat a couple of months ago. While it was for PT/SPT and OT was neglected, it was awesome because we got to see how many missed opportunities we had to encourage Boo’s language development.

I think it would also help us at home. By the time we finish 3 hours of therapy, we forget to integrate everything in the home.

If only I ran the Insurance world!



3/21 (yes, I know I am early!)

My child does not have Down syndrome. However, a lot of the strategies and treatments that have proven success on children with DS work for Boo. So I am so thankful for the children and people with Down Syndrome who happen to be in our lives.

We have learned so much from their struggles and successes.

March has been named Down Syndrome Awareness Month. World Down Syndrome Day was established in 2006 by Down Syndrome International, with the goal of raising awareness and mobilizing support and recognition of the dignity, rights and well-being of people with Down syndrome across the world. March 21, the 21st day of the third month of the year, was chosen to symbolize the third copy of chromosome 21 present in Trisomy 21, the most common form of Down syndrome. In 2012 the United Nations began celebrating this wonderful day.


It is important to celebrate World Down Syndrome Day on March 21 because there should be a day to celebrate the needs of people with Down syndrome. We are able to do things that other people can and can’t do – just like anybody from around the world,” says National Down Syndrome Society (NDSS) Goodwill Ambassador Chris Burke. “No matter who we are or where we live, give us a chance to do something with our lives so we can look forward to the future.”

Photo credit: Google images



And by the way, how super cool is it that Chris Burke lived his dream to become an actor? Talk about breaking a glass ceiling!  Okay, back on point…(yes, I did have one)

So anyway, Boo does not have Down syndrome. But she does have special needs and I think that a lot of her needs are helped by the tools created for Down syndrome. So in the self-interest of solidarity I am shouting from the bottom of my heart about World Down Syndrome Day.

And I am asking everyone I know (either in real-life or virtual) to show their support of all the awesome people with Down Syndrome. How can you? Well, I have found a couple of cool ideas. So on 3/21 choose one or more and join the party!



Photo credit: Lot’s of Socks

The first is to participate in Lots of Socks. This year the International World Down Syndrome Society is encouraging people to wear two or three or more different socks. Why should you participate? It is a great visual to people that even though the socks you are wearing may be different they are still socks. Just as children with Down syndrome (or plug for Boo “Special”) they are still children.
 
Wear a light blue or yellow shirt. These are the colors of the National Down Syndrome Society. They also have wicked cool shirts go here to order: 3:21 Signature Clothing

Photo credit: Google images
 
Tell your friends and family about the day. Tell them how your child may/may not have Down syndrome. But that we support all of the differently-abled children in the world. And wearing socks is just too fun not to participate.
 
Acknowledge how awesome a person in your life who has Down syndrome. Give them a shout out on Facebook, e-mail, send a card proclaiming their awesomeness. Better yet, educate some one on the facts of Down syndrome not the myths.
 
Here is another thing you can do….give to a charity that provides services to those families who have Down syndrome. Heck, offer to babysit! There are many organizations out there. This is the one that I know about: 

Heartbeats for Down Syndrome. This organization was founded by four mom’s whose children happen to have Down syndrome. Together they collect care packages and deliver them to Children’s Hospital Boston. Their loving packages for the patient and families with Down Syndrome give a moment of comfort when they are facing cardiac surgery or long-term hospital stays. To find out how you can help please visit their  website or Facebook page!

Sign-up or support some one who is participating in this year’s Best Buddies event(s). Best Buddies is not limited to Down syndrome, but encompasses all of our children with developmental disabilities.

There are many other organizations that provide support and encouragement. But acknowledging World Down Syndrome Day doesn’t mean you have to give to charity. You can just wear Lots of Socks, a blue or yellow t-shirt or all 3!
 
 
So spread the word, we have 9 more days to let everyone know about this cool event. And bonus, you won’t have to worry about that missing sock the dryer ate.


photo credit: ndss.org

 

 

 

Fear….

You know fear as a parent. When you are pregnant you fear that your pregnancy will be difficult, you fear labor, you fear an imperfect child, you fear that you will never again be able to see your feet.

Then your child is born and you begin to fear a whole different set of things. You fear they will never sleep thru the night. Then they do and you fear something happened so you go in to check on them, waking them up in the process and start the whole process over again.

And then the first day of school. You begin to fear a whole bunch more!!!!

But when your child is special needs, you end up fearing all of the above with an extra dose of holy crap.

One of my fears with Boo, is actually about sisters. Allie has always loved Boo. From the beginning, she was attentive and patient. We are extremely lucky. Allie has never shown the sibling rivalry, jealousy or acted out like we have been warned.  Allie has always been a loving, if photo hogging, protective big sister. She is Boo’s biggest champion, her favorite person and not to give her too much to gloat over, the most patient with Boo.

First love


I wonder how long it can possibly last. I was recently reading a book called, Easy to Love but Hard to Raise. In the book there is a chapter called A Tale of Two Brothers. Laura Shumaker tells of her two sons, one with autism and one a typical boy. When they were little, the younger brother always defended his older brother.

But as they grew up, the younger brother became embarrassed. He no longer invited friends over. Laura didn’t notice until the older brother went away to a live-in school. That was when the younger brother thrived. Her house became kid central, there were more activities, etc…. Laura never realized how her younger son had to change the boy he was meant to be because of how his brother shaped their world.

I never want that to happen. I fear the day Allie becomes embarrassed by her sister (more than the run-of-the-mill sibling crap). Allie is Boo’s champion and caretaker. I overheard Allie recently say that when she is older her house will be big enough for Boo to come live with her.

Selfishly, I want it to remain that way.

This weekend I was honored to attend my two nephew’s Eagle ceremony. The brothers, while they aggravate one another to know end, have this wonderful bond. They do everything together. Born just 17 months apart, they act like twins. Where one is you will find the other. They have that “normal” sibling relationshipk, one that Allie and Boo might never have.

I remember when I had Allie. I was a one-and-done mother. I saw my nephews (who are much older) and thought no way in hell can I handle two.  I didn’t think I had it in me to love (or have the patience for) another child. Now, I cannot imagine my life without Boo. She has completed our family in ways I never imaged. 

But….she does impact in ways we never thought she would either. 

We try not to let Boo’s many appointments, therapies and Boo-ness affect Allie. She has her riding, her friends and I joined the darn PTA to become more involved with what is going on in Allie’s life. But Allie is not always invited to birthday parties,she is not invited for play dates and hardly ever has friends over. I am not sure if it is due to Allie being Allie, just 3rd grade politics, our own business (I don’t ever think to offer to have more kids running around!) or if her friend’s parents feel Allie cannot go because of Boo. That we are too busy or stressed or whatever.

Boo is Boo. And she is to be valued to for the love and joy she has brought into our lives. I worry how to keep her Allie’s joy and not her burden.

I wish, pray and hope that Allie will always love Boo more tomorrow than she does today.



Beautiful Blogger Award

I need to thank Sylvia over at Faithful Mom of 9 for awarding me the Beautiful Blogger Award.

 beautiful-blogger-award           very-inspiring-blogger-award11

I cannot tell you how touched I am that this great lady, a mother of 9 kids (my head is spinning over that one, seriously 9???) According to the rules, I have to list seven facts about myself and then answer a bunch of questions. So here I go!

Seven things you might not know about me:

1) At 19 I wanted to be married by 21 and have 4 kids by 28. I didn’t get married until well into my 30’s, had Allie and rethought the number of children I wanted.
2) I love to travel and married a man who thinks camping is traveling.
3) I miss living in the city where you can have something other than pizza delivered.
4) I met my husband playing volleyball. I am 5’2 and he is 5’4. What the heck were we doing playing volleyball?
5) I was completely shy until I hit 35 and no longer cared if I embarrassed myself. Or my husband and children.
6) I work in clinical research. This gives me enough knowledge to be dangerous when it comes to Boo’s care.
7) I am not a nurse because I do not like naked people or bodily fluids.

As if that wasn’t enough information about me, I also have to answer Sylvia’s questions.

1) What is your earliest memory? Is my brother trying to feed a deer at Santa’s Village. He had those mittens on that were strung together so he couldn’t lose one. Do you remember those? Anyway, the deer ate the food, and then tried to take off the mitten. That was still attached through his coat to the other mitten. Did I mention there was a fence?

2) What is your favorite out door activity? Sitting on the beach with my toes in the water and my ass in the sand. (love Zac Brown). Is sitting considered an activity?

3) What is your favorite cause? Probably St. Jude’s because I love that they are dedicated to research AND that there is never a family bill.

4) What is your favorite charity? NSTAR’s Walk for Children’s Hospital because it allows us to pay tribute to the wonderful staff who saved Boo’s life and make her the Boo she is and will be. We have walked the past four years and have raised almost $10,000 since 2009.

5) What job is your dream job? Not having one. But if I had to have one, it would be to be an advocate for Special children.

6) What is your favorite song? Right now it would be Ho Hey by the Lumineers. All time favorite would be Devil Went Down to Georgia or anything by Jimmy Buffett (yes, I know he doesn’t sing Devil).

7) What is your favorite movie? the Princess Bride. My name is Inigo Montoya, you killed my father…

8) Do you have any phobias? If so please tell us what they are! I am afraid of heights. But I love skiing and roller coasters. I close my eyes.

9) What is your favorite animal? Dogs. Even if they are crazy puppies.

10) What is your favorite flower? The Gerber Daisy. They are just so happy looking.

11) If you could live anywhere you wanted to, where would that be? Right where I am, but with a maid.

Thank you Sylvia for making me feel beautiful!

I tried to cook….

I am a good cook. I swear. But this one time I made spaghetti sauce. From scratch. I used a starter sauce from the freezer that had been left over from the last time we had pasta. I added tomatoes, fresh spices, all the fixings to make a wonderful sauce.

It simmered all day, enhancing the flavors.

My boyfriend, now husband, came home from the fire station. There was wine. There were candles. There was pasta. He took a bite. Got a funny look on his face. Tried another. Took a sip of wine. And….

Him: You know honey there is a funny aftertaste.

Me (quite insulted): What do you mean a funny aftertaste? I spent all day on this meal!

Him (bashfully–we were not dating that long): No, it’s “fine”.

I took a bite, yup. It had a weird taste. But there was no way in hell I was going to admit it. A couple of more bites and then….

Him (astounded): Is this a potato? Wait, is this a piece of meat?

It seems that I may have defrosted the beef stew and used it as my starter. It was some time before either of us trusted my sauce again.

And that is how I Finished This Sentence Friday…I tried to cook! Please click on a link below and join in!

Finish the Sentence Friday
 
 
Hosted by….



Trying to spread the word…

Today is spread the word to end the word day. It should probably be renamed to DO NOT spread the “R” word day. That kind of rolls of the tongue easier, doesn’t it?

Anyway, I was always on the fence with this one. The “R” word didn’t really bother me until freaking Ann Coulter decided to say the President was like my child. Which if we were kind we could say that she was trying to give him a compliment. I mean really, how nice for some one to try to emmulate Boo, the best hugger out there. But we do know better. 

And still as much as her ignorance set me off (a kind word for swearing at the television), I have really not been that staunch an advocate. And here is why.

I’m from New England. Now I know that is not an excuse for anything other than knowing how to drive in a rotary, where to find the nearest Dunkin & Donuts, that in Somerville there are more liquor stores than streets and what mall-bang are.

In New England it is not uncommon to hear the words ‘wicked’, ‘awesome’ and ‘retarded’ without any malicious intent. And sometimes in the same sentence: Those wicked awesome Sox played retarded last night. (And by the way the “r” is silent and becomes an “h”).

But here is where I have a hard time melding where I live with who I live with. I have friends, family, co-workers use that word. I have heard Boo’s therapist (one of my favorite people) use the “R” word to describe something benign. I have asked them to find another adjective. They immediately apologized and then repeated the R word again 5 minutes later.

I “hear” the word now. Before it was an adjective, now (for me) it is like dropping an “F” bomb in front of a preschooler. And just because they might use the word, for me, is not worth losing a friendship over.

I believe in the freedom of speech. I also believe in living in a world without hurt. I am also a realist and know that those two concepts cannot live in harmony.

So the next time you say the “R” word, think of this face….



And ask if you would say that the wicked awesome Sox were playing like Boo or are you just hoping they would try as hard?

So, please just find another word. The dictionary is full of them.





Allie-ism of the day

Allie was telling me about something that happened at school. Now I admit to half-listening because it was a very long story. But then she ended it with….
 

They should know that I have trouble making decisions. I mean really, I cannot even decide what socks to wear in the morning

I still do not know what she had to make a decision about (I think it had to do with something about a Wizard Club and what spell to use) but man, I love that girl!

Strange weekend happenings

We seem to have strange relationships with Boo’s team. From her teachers, to her aides, to her therapists and physicians. They text us, just to say hello. They meet us out for walks. They meet us out for drinks. We recently had a fundraiser for Children’s Hospital in Boo’s name and every member of Boo’s  therapy team were there. None of whom is associated with Children’s.

Of course, the fact that the fundraiser included Sam Adams helped the turnout.

But this weekend took the cake. The wedding cake that is. Boo had an OT who has left the center Boo goes to in order to work in the school system. Unfortunately for us, not in Boo’s school system. But we were so happy that K got a job close to her home, with better benefits and much nicer hours.

About a week ago I got a text from K asking me to go with her to shop for a wedding dress. It was a mass text (I know because I got replies from other people). So I figured she texted me by mistake. Until she re-texted me to see if I would be able to get a sitter.

So off I went with Boo’s previous OT, her current SPT and pool PT therapist to look at wedding dresses.

I am so glad I am not a bride.

But I am so glad I went. After the torture of dress shopping, we stopped at a Korean Hot-Pot restuarant. It was so much fun. I also proved that I am completely inept at chopsticks. Thankfully 2 out of the 4 of us were experts. They ‘fed’ the pot and then myself and Boo’s SPT got messy trying to eat.

It was funny to see them out of away from the therapy rooms. To learn their sense of humor matches my own (we almost got thrown out of the bridal shop), to learn more about their families (which is only fair since they know so much about us) and to NOT focus on Boo. Sure we talked about her, but as friends not as therapists. It was even better when we all realized we were NOT in the wedding, but invited guests. 

I was kind of nervous going off for the day with people I have known for 4 years but not really known. I am glad that I stepped out of my comfort zone.

The night ended at an Irish pub, as the nights should.