Yesterday morning I was cleaning out Allie’s backpack. I know, most mom’s are on the ball and clean out the backpack the night before to make sure there wasn’t homework. Me? I wait until 10 minutes before the bus comes. Innocently enough there was some St. Patrick’s paperwork. A piece of paper with a 4-leaf clover where Allie had to write four wishes.

1. To see Selena Gomez
2. For Boo to stop having special needs
3. To stop having bad teeth
4. I would love some nice horse books

Okay, wish #1 is probably out. I do not think Selena Gomez tours. But I will set a Ticketmaster alert!  For wish #3 I know this is due to her having a pallet expander put in her mouth last week. It has not been fun. And I can totally grant wish #4 in her Easter Basket next week.  But back to the wish that broke my heart. How do you explain to your child that their sister/brother will not be ‘cured’?

Allie seems to take Boo in stride, I thought. Out of everyone Allie seems to take Boo as she is, just her little sister.  Of course I had to ask. First I asked what Allie meant by special needs. In Allie’s mind, special needs meant that Boo takes longer to learn stuff, things are harder for her and she has to spend so much time in therapy.

I explained to Allie that Boo cannot be ‘cured’ (I know, MOM–with exaggerated eye roll) but that she improves with every therapy appointment.  That only a year ago Boo barely talked and now she has about 60 words and just started using 3-word sentences. That today she can jump, ask for a cracker and climb up and down the stairs.

Allie told me that if Boo wasn’t in so much therapy then maybe we could do girl scouts, gymnastics, play-dates. I didn’t want to shatter her innocence that it was my fault she wasn’t enrolled in any of that stuff. Team sports gives me nightmares. Have you seen Dance Moms? No way in hell am I going down that road. I will take 15 therapy appointments a week!

But this comment opened my eyes to what we are doing wrong with Allie. I thought that by having her attend Boo’s appointments she would have a better understanding and be able to work with Boo in a positive way. And she has, I have seen Allie tell Boo to use her words or how to make her use skills learned in OT. She can explain to her friends why Boo doesn’t understand or act like a typical 4YO. However, I did not realize that Allie is beginning to resent having to spend 2 hours a day after school at the therapy center. She wants to be home or with her friends or anywhere else. This is something, though, we can fix. We can have some one pick Allie up afterschool so she doesn’t have to attend every therapy appointment.

However, she is not going to be able to do team sports. I am not that accomodating!

The United Nations has designated March 21, 2013 as World Down Syndrome Day, a day to recognize terrific individuals who have Down syndrome. Countries from around the world will be wearing Lots of Socks to celebrate! I want everyone I know, either in real-life or this blogging one to participate.

On 3/21/13, to celebrate the unique Down syndrome person, please participate in Lots of Socks! I am inviting you (and everyone you know) to wear brightly colored socks, mismatched socks, long socks, short socks, printed socks, one or two or three socks. If socks are not your style consider wearing a blue or yellow t-shirt in recognition of our friends who have Down syndrome. Or better yet, do both!

This is a great way to demonstrate that although the socks are different, they are still socks. Just as a child with Down syndrome (or any special needs) is still a child.

For those who may not know, children with Down syndrome are born with an extra chromosome 21, giving them 3. The good news is that with knowledge and medical advances the life expectancy for people with Down syndrome has risen from age 25 in 1983 to age 60 today! People with Down syndrome attend school, work and participate in sports and other extracurricular activities. And while all people with Down syndrome experience cognitive delays, the effect can range from mild to moderate to severe.

So just like any child, a child with Down syndrome has unknown possibilities.

I hope you and your children will celebrate the extraordinary lives of people with Down syndrome by wearing lots of socks on 3/21.
For more information:
Massachusetts Down Syndrome Congress http://www.mdsc.org/
National Down Syndrome Society http://www.ndss.org/Down-Syndrome/
World Down Syndrome Day http://www.worlddownsyndromeday.org/

Remember the grand plan I had to whisk my husband away for a weekend? A great friend even offered to watch both girls. How lucky was I, that Boo didn’t terrify her? I guilted a family member into taking crazy puppy. Well, not really guilted. I told her that if she took crazy puppy for the weekend her husband would stop asking to get a dog.

We were all set for this weekend. Except, I told my mother. Whom I love! But then she asked if we were coming down for Easter. I explained that I didn’t want to travel two weekends in a row nor could I afford two trips in less than 7 days. I could tell she was disappointed.

I get home and tell Hubs. He “was looking forward” to going down South to get out of this freaking cold weather. I told Hubs my dilemma. His response? Whatever you want to do. HONEY.

Oh, so helpful.

Going back and forth all night, I decided I was being selfish. That the girls would love to see their grandparents. That we are the only ones ever willing to travel down there to see them. They always have to travel to see family. That the holidays are tough when it is just the two of them.

And then Boo got sick at about 3am. (side note, guess who was working?) Again, I was on the fence.  I know our friend will be awesome, and am so thankful for her offer. But…..

Between the guilt and the worry it just isn’t worth it. I cancelled our reservations and I will beg “J” to keep her offer open for when it is warmer. That we will try again for some time away. I was also thinking that this is something our parents never worried about. They never traveled without us. Back in the day, people just didn’t travel as often period. Let alone a vacation from their kids.

Yes, I admit, it would be a vacation from the girls!

I called Hubs and let him know that I cancelled the reservations. His response: Why? I told him my reasoning. His reply: Well if that’s what you want to do.

Did I mention how helpful he is?

St. Patrick’s Day is my favorite holiday. First, I don’t have to go into debt buying a bunch of presents that no one really wants. Second, hello music and wine. Enough said! I joke that Hubs will work Valentines Day every year, but will make sure he takes March 17th off for me.

He does know the way to my heart. He even got a sitter for yesterday! Well, his mom. But woo hoo.

We decided to early for a late-lunch/early-dinner and then get the girls by 5-ish. Yeah right. See, there was this fire…..we had barely got into the Pub when his radio went off. You could tell he wanted to leave. He was like a little kid doing the night before Christmas dance. Luckily we were with friends so off he went.

A couple of glasses of wine, Irish jigs with strangers teaching the young ones how to clap to “No, Nay, Never” he returns. He felt it was the best holiday ever: beer, Sheppard’s pie, and a brush fire. And this happened:

Instead of leaving at a respectable 4pm, it was more like 7-ish. (hey at least it was 7-ish pm and not am!). We went to pick up the girls all was well. They had a fantastic time with their Grammie.

Best holiday of the year. No cooking, no shopping, no credit card debt and a picture I can embarrass my husband with!

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!

Go link up now 🙂 

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?

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!

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.

“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

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

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.

photo credit: ndss.org

 

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.

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

           

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!