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.

Part of the blog-version of Tagged is that I now get to be nosy with some of you. Hmmm…who to chose? How about

Leah over at Sunshine in a Hypotonic World. Since she just finished painting a beautiful masterpiece in her daughter’s room she should have time to answer some questions. I am seriously jealous of anyone with that kind of talent!

Becca over at The Bates Motel. Her daughter Samantha is a beautiful girl with Down Syndrome. But DS does not define her or their family.

Sylvia over at Faithful Mom of 9. Honestly, not only does she have NINE children she is faithful. I am not quite sure how she does it. 

And last, but not least…Rachel over at Tao of Poop. Because any blog with the word Poop in it is just funny. And she is.

Unlike, Kristi I did not ask permission before tagging!

Okay ladies, it is time to answer 50 or so questions about you and yours! (FYI, you don’t have to answer all of them, but it would be fun if you did).

1. Favorite movie?
2. Would you sky dive?
3. Would you rather be a Pirate or Cowboy?
4. Who would you rather have over for dinner: George Clooney or George Carlin (yes, I know Carlin is dead!)?
5. What song do you want played at your funeral?
6. Cruise or hike?
7. Are you athletic?
8. If you pretended you were athletic, what sport would you play?
9. Are you afraid of bugs?
10. (this one is a toughie) What is the hardest part of your day?
11. (not so tough) What is your favorite part of the day?
12. What is your dream job?
13. How did you meet your spouse/lover/partner?
14. If you could change one thing in your life, what would it be? And NO you cannot answer have more money. Unless you are Donald Trump answering this question.
15. Would you prefer a dozen roses or a box of chocolates?
16. Speaking of George Carlin (see question 4) how weird was it that he was the conductor in Thomas the Train?
17. Speaking of Thomas the Train Conductors, who is the strangest person to play the conductor: Ringo Starr, George Carlin or Alec Baldwin?
18. Favorite charity or cause?
19. If you could spend a weekend with any famous person who would it be and why? Oh, and if you pick a Kardashian be prepared for me to heckle you.
20. Favorite book or author?
21. What country would you like to visit, other than your own?
22. Do you remember your first kiss?
23. Favorite decade?
24. How happy are you that you are now half-way thru this list of personal questions?
25. What was the last thing you ate?
26. If you could change places with anyone for the day, who would it be and why?
27. Of the many quirks that make your child special, what is the most endearing one?
28. What book are you currently reading?
29. What would you tell your 20-something self NOT to do?
30. Favorite take-out food?
31. How did you get started blogging?
32. Speaking of blogs, which one must you read every day? No, you don’t have to pick me. BUT it would be cool if you could provide the link so we could meet your favorite bloggess. I promise no one’s feelings will get hurt. Okay, I cannot promise but I don’t think they will.
33. How many languages do you speak?
34. Have you ever hidden in the closet to eat the last piece of chocolate in the house?
35. What is your least favorite chore?
36. Would you want to rule the world?
37. What adventure would you tell your 20-something self they had to do before getting married and/or having children?
38. If you could be a super hero what would your name and super power be?
39. How happy are you that I could only think of 39 questions?

Okay, now you must go forward answer the questions and then torture some one else with 50-or so questions of your own!

This Friday’s Finish That Sentence….is asking my opinion of social media.

I think it is great. I mean really, how else would I know….

• That Brittany Spears is now a brunette?
• That a friend on Facebook cooked dinner, did their laundry or better yet just woke up from a nap?
• That some idiot at Nickelodeon thought it was a brilliant idea to have two actresses pretend they were moms in charge of a PTA bake sale and make fun of kids with food allergies? (although I do admit that their line about guilty us to volunteer since 2010 was quite comical)
• That there were so many videos of cats acting crazy

However, there are some great benefits to social media. I found most of you that way! I also found out…

• That Boo was not the only undiagnosed child in the world.
• That Yoga for the Special Child is not only available, but available locally.
• That my brother who lives across the world from me can play Words With Friends at the same time as I do. We are just playing on different days of the week.
• That Allie has a half-day of school. (Honestly, I forgot and if it wasn’t for someone posting it on Facebook well it could have been disasterous!)
• That I can stay in touch with friends without to have them over for dinner.
• That you can raise money and awareness for great causes.

But if I was Mistress of the Social Media World I would have the following rules for social media (I would also have a cool costume)….

• That if you put a picture of the meal you just made as your status on Facebook you must invite me over for dinner.
• That if you just woke up from a nap and decide to brag about it you realize I will be dropping the girls off at your house for the next 6 hours.
• That any reporting of Kim K, Lady Gaga or any Real Housewife will not be on my evening news.
• That you will not have your Facebook Status proclaiming: FML unless your life really sucks. For example, you were just told you have 12 hours left to live and for those 12 hours you will be covered in fire ants.
• That you understand ‘de-friending’ really isn’t an insult. Sometimes it is a blessing.
• That you will not, for any reason ever, post a stupid video of yourself acting like an idiot. Especially if you are Ann Coulter.
• Better yet, if you are Ann Coulter you will never, ever be on any social media outlet. Like Ever.

And that’s what I think of Social Media. Aren’t you glad you asked?

Okay, I have so you can participate in Finish That Sentence Friday, visit the hosts below and link-up!

Finish the Sentence Friday is hosted by:

Quick update before I get back to being tagged….

• Boo’s potty training is off for now. She has had a hard week with constipation and while we finally resolved it, she now has the opposite problem. (TMI, I know). I have however picked a date (in my head) as a start date.
 
• We decided to go away. Turns out that husband is about as big a wimp as I am when it comes to leaving Boo. We played with leaving Allie with friends, she has been dying to have a real sleep over versus taking the girls with us versus just cancelling. In the meantime a great friend offered to take both girls for the weekend. Husband figures that we can always come back if we panic (we will only be 3 hours away). We also will be warning our friend that we might change our minds between now and then!

Okay, back to the game…

You know that Facebook game of 20 questions? Well, I was “tagged” by Kristi over at Finding Ninee. Instead of 20 she had just over 50. If you are feeling you are missing something by not seeing questions 1-27 you can catch up here.

So I was tagged. Not in a tattoo sort of way but in that fun Facebook way. Now there is no way in hell I am going to be as funny as my tagger nor can I draw. In real life or on the computer like Kristi. But here I go….

1. WHERE WERE YOU BORN? The US of A
2. WERE YOU NAMED AFTER SOMEONE? Nope. My mom did try to name me after County Kerry in Ireland because she thought we had relatives there. Turns out not only did she spell my name wrong, her relatives were from someplace else in Ireland.

3. HOW MANY CHILDREN DO YOU HAVE? Four if you count husband and crazy pup

4. HOW MANY PETS DO YOU HAVE? One crazy pup, unless I can count husband for this too.

5. WHAT’S YOUR WORST BOO-BOO? Well I fall, so are we talking recent or just in the past? Not to bore, but in recently when bringing crazy pup into the house I managed to Alley Oop onto the porch. Managing to knock the screen off the house, the kitchen chair to the floor and I ended up half in and half out of the house. There as no hospitalization but man I was sore!

6. WHAT’S YOUR FAVORITE THING TO BAKE? Spaghetti sauce. It is easy and makes the house smell like the North End

8. WHAT’S YOUR FAVORITE FASTFOOD? Wendy’s Chicken Sandwich. Plain.
9. WOULD YOU BUNGEE JUMP? Hell no. I like my spinal cord. Well, wait. After how many drinks did you ask me this question? Because sadly, that would probably change my answer.

10. WHAT’S THE FIRST THING YOU NOTICE ABOUT PEOPLE? Their hair. Since mine is always out of control and looks like Rosannadanna. Yup, I am that old I remember her.

11. WHEN WAS THE LAST TIME YOU CRIED? Boo’s spinal surgery. I don’t think I cried as much as I broke into little pieces.

12. ANY CURRENT WORRIES? What with a special needs child, working full time, a crazy pup, a 9YO going on 17 and a husband. Of course not!

13. THREE DRINKS YOU DRINK REGULARLY? Water, diet coke (nope, haven’t managed to break that habit yet) and Pinot Grigio. Not necessarily in that order.

14. WHAT’S YOUR FAVORITE BOOK? Hmm…anything by JD Robb for sure.

15. WOULD YOU LIKE TO BE A PIRATE? If I could look like Penelope Cruz in a corset, yes. If I looked like Blackbeard not so much

18. WHAT SONG DO YOU WANT PLAYED AT YOUR FUNERAL? Volcano by Jimmy Buffett

19. WHAT IS YOUR FAVORITE HOBBY? Reading. I just love getting lost in a book.

20. WHAT FUN THINGS DO YOU DO? Girls Night In

21. WHAT MAKES YOU LAUGH? Boo’s laughing, while holding her hand over her face and saying I FUNNY

23. DO YOU HAVE A.D.D? Nope, but I think my husband does.

24. WHAT’S YOUR FAVORITE LUNCH MEAT? I hate lunch meat. I mean really, who thought that pressing food into a compress making it slimy and then eating it was a good idea?

25. DO YOU LIKE BLUE CHEESE? No it gives me nightmares. Once as a teen working a Friendly’s a container fell to the floor, covering me from head to toe.

26. WHAT DO YOU THINK OF HOT DOGS? Same thing I think of lunch meat. But I haven’t told the girls my thoughts since that is the easiet dinner in the world to make them.

27. WHAT’S THE LAST MOVIE YOU WATCHED? Princess Protection Program. It was under the duress of an extended February Vacation.

Okay, nowI have like 25 more questions to answer. So look for tagged part 2. Oh and check out Kristi’s blog! Finding Ninee was recently in the top 50 Circle of Moms the Funniest Blogs and it was well deserved!

Sometimes I have to remember I have a husband. He is not home often, if he is not at his first job he has found a second or a friend in need of his help. I usually joke I am a single parent with a dual income. Not to minimize what single parents go through. But at night when the girls are in bed I realize it has been about a week since I last had a conversation with the man.

And that conversation had nothing to do with US but with the girls. What appointment Boo had that day or Allie needed help with something. Or hey, can you feed the puppy? These conversations usually happen as the other one is walking out the door.

Thank goodness for texting. Cause at this point that should count for conversation!

So I was trying to find a way to reconnect. Without the girls. In a moment of (what I now think was) sheer insanity, I booked us a weekend away. Just the two of us. No friends, not children, no family, no puppy. A short 3-4 hour drive away. Far enough that I won’t come back early. Close enough that I can get back early. (Yes, the extended February vacation had something to do with my insanity). Close to wineries and a hard cider mill. Shopping, hiking, who knows. Just being a couple for almost two days. Well, what I should have done was make the reservations for right then, rather than in a couple of months. Because….

Holy crap what was I thinking?

Now, in the interest of honesty I never had a problem leaving Allie for the weekend. Heck, we even flew across the country to Vegas one year for a long weekend. I could leave Allie anywhere with anyone. I am not saying that I love Allie less. It is just I could meet someone at the post office and they would gladly take her home.

Allie is easy.

I have a couple of friends that will take crazy puppy. Ones that want a puppy and then take Bailey and realize they like their house dog-hair free. But they love to take him from time to time.

Bailey is easy.

Boo is the hard one. And hard is the wrong word. First, I don’t like being away from Boo. I have done it before. We went away for a week and left Boo and Allie with my parents. I worried the entire time I was gone. I called home (FROM ARUBA!) at least 3 times a day to check on her.  Looking back, it was easier to leave Boo when she was not mobile or really ‘developing’. She was in a great daycare where she just hung out. So my parents were not with her for 24/7. They got 8 hours off during the day. And still they were completely worn out by the time we got home. But a weekend? That is 48 hours of non-stop Boo.

I worry about people not being able to handle Boo. She doesn’t always sleep through the night. She hits her head when she is frustrated. She needs a translater. We know what she is saying, but the uninitiated….Boo misses us now. She realizes when we are not there. And after this weekend, when she was so constipated she screamed for almost a whole day until I finally got the medication to work then we had the opposite problem. Will some one not used to this type of thing understand and not panic?

Boo is also lovely, a cuddler and a great little kid.  She has the best hugs and is freaking hysterical when she gets excited about something.

We have a few trusted babysitters. Those who can ‘handle’ Boo for a couple of hours. They are generally teens and don’t have to cook, clean or do anything other than hang with the girls for few hours.

But a weekend? There are maybe a handful of people I could ask. More importantly that I would trust.

I think they would rather have the crazy puppy.

Now I am in a quandry. Do we still take our weekend and act like adults? Or do we bring the girls along with us? Or do we just cancel and plan a more family-centered getaway?

When I brought this up to Husband he replied, in typical male fashion, “whatever you want to do”. Yeah, that helped.

So now I am in a quandry. Do I take a weekend to reconnect with my husband? Or do we take the girls with us and reconnect as a family away from therapies and other commitments?

What about you? How do you remember you have a husband? Other than when it is time to do the laundry?

A couple of days ago Allie had a grand plan of sharing a room with Boo. Well, not quite “sharing” as sleeping in the same room. Allie’s current room would become a play room. For Allie, the more I think about it….

Anyway, there have been several misadventures with this plan:

Boo now expects Allie to go to bed when she does. The other night she was crying hysterically. I found her in Allie’s ‘new’ bed searching for Allie. How Boo got up on the bed in the dark with her stuffed puppy and blanket is still a cause of wonder.

Boo woke up at 3AM and thought it was play-time. She bonked Allie on the head and said “Story”. (Again, I am thinking this counts as motor planning, speech and hey she had a thought and followed it through)

Allie woke up just before dawn to use the bathroom. Boo heard her, escaped the room and started playing with all the toys that make noise. You know, the loud ones. Allie was unsuccessful in getting Boo back to bed. Boo ended up with me. Which means for 2 mornings in a row I was awoken before dawn. Totally eliminating the perk of the the sleep over.

Allie has asked for an extension on the trial period. She is sure that Boo will eventually understand not to wake her before 7AM. I think she just has her eye on a play room.

So we compromised, for the short term. Allie has moved back into her bedroom for school nights. They will try again for weekend “sleep overs”. Boo has not adjusted so well. Frequently waking to find Allie. But in the end, only having one child up at 2AM rather than two means I only have one over-tired child. I am hoping with Boo returning to the routine of school (FINALLY) she will get back into the routine of sleeping through the night.

Did I mention the girls are finally back in school today? Yes, that was me doing the happy dance. I might not have rhythm but I definitely have enthusiasm!

I thought it would be fun to jump on the FTSF sentence of the week.

“Speaking from experience, I’m going to give you a little advice on…”

At first I thought, experience? Really, the Boo experience. I am so putting that on my resume! But the more I thought about it, and the reason I chimed in on this post by Finding Ninee was to me, this is the best part of blogging. Learning how we all cope in this Special Needs World.

Speaking from experience, I’m going to give you a little advice on….following your gut. I know, you are thinking seriously? Following my gut? I know how to do that.

And most of us do. Except when it comes to what I call white-coat syndrome. We put so much faith in the doctors, therapists, teachers that take care of our children we sometimes forget that their college degree does not trump our mom degree. (oh, another tag on the resume!)

Here is what I know. When Boo was born I knew there was something wrong. She was adorable, don’t get me wrong. It wasn’t that she looked like a troll or anything. But she breathed funny. And I listened to the doctor’s and nurses who told me I was just a new mom.

When Boo was being cared for Early Intervention, I listened to her nurse that told me she was just ‘mildly’ delayed. That Boo did not need the added therapies I was advocating. EI did not want us to seek alternative therapies. Our insurance company really did not. But they were wrong. Boo started physical therapy at 6M old. She could not roll over. It took almost another 6M to gain that skill. Boo also needed feeding therapy, speech and occupational therapy. When Boo was 2 and still not making any attempt to walk her PT decided to try a pediatric walker. Her theory was that although Boo was not physically I(or developmentally) ready. Each time, EI would say that I had Boo in too much. That she was going to shut down.

Bull crap.

Boo excelled. It took her a month to master the pediatric walker. From there she was chasing Allie around the house. She loved it and in just 8 months was walking independently.

In fact, this two-week vacation from her school/therapies once again proved that Boo needs intense therapy to succeed (slight pat on my own back there).

I am not pooh-poohing EI. I am not saying not to listen to your child’s doctors, teachers or therapist. We are so lucky. Boo’s peditrician has always backed us 100%. They have assisted us in advocating for Boo. But always remember, their degree while important does not make them an expert on your kid.

Your mommy degree always trumps theirs! I am just speaking from experience, and giving you a little advice on following your gut. (And we should totally find a way to put our experience on our resume!)


Finish the Sentence Friday is hosted by:

Boo is not potty trained. I know in my heart (and have a doctor’s note) that she is just not ready. But she may be ready to give up the diaper, if not for big girl pants. During this extended vacation, she has managed to take her diaper off…while leaving her clothes on.

I am giving her total points for the magic act. But am a cross road. Am I holding her back by keeping her in a diaper or is she truly not ready? I do so much for Boo that I would not have done for a 4YO Allie. I carry her, even though she can walk. Why? Because it is faster and I am in a hurry. I sometimes feed her, because she is tired and I want to get some food into her anyway I can. She cannot dress herself or manuever herself onto the toliet.

Or can she?

This is the girl that in the past week has managed to climb onto Allie’s bed in the pitch dark and remove her diaper while wearing jeans and a sleeper.

Am I just making excuses and being lazy? Because let’s face it, having her in a diaper is much easier.

Did I waste the time provided by Nemo when we were housebound for four days? That would have, in retrospect, been the best time to try to train Boo.

I just do not know. She doesn’t tell me she has to go potty, that her diaper is soiled or that she has to poop. She does not have the language skills for requesting anything other than “Charlie” on the IPAD. She is either constipated or having diarrhea, not the optimal thing to clean out of clothes. (there I go being lazy again)

But that doesn’t stop me from wondering if I am putting limits on Boo instead of pushing them.

I would like to take a moment and raise my wine glass to the stay at home mom. Especially the SAHM that has a child with special needs. Although if you have a ‘typical’ child like Allie that can numb your ear drums with her stories, my glass is up for you too.




twoasiansnabottle.wordpress.com

I am not sure how you do it. You are my hero. The girls have had an extended February vacation thanks to Nemo. I have played countless games of Sorry and Yatzee. I have tried to keep ahead of the mess that two children can make in under 5 minutes. I have tried, really tried, to keep Boo in a therapeutic environment.

I have failed. I have allowed more TV in the past 10 days than in the 9 years of Allie’s life. I think I can recite the words of every theme song on the Disney Channel. This morning Boo woke up and demanded “Charlie” (for Good Luck Charlie). It was 6am. I let her watch it on her IPAD.

Work has been an escape. Even if only for a couple of hours, work has allowed me some respite care.

There is only 4 days left until the girls return to their routine. I am starting to count down the minutes.

So I take a moment to raise my wine glass to the moms who survive the stay at home experience while maintaining their sanity. Cheers!