Monthly Archives: November 2012

Don’t steal my idea now….

Last week before we left for Disney, I was in a panic. Boo elopes, she has gone missing for short (thank God, SHORT) amount of times. If we are in the backyard and blink, she is in the front. She managed to escape a therapy session, school and her bedroom. We have been so lucky that we (or some one) has been able to chase her. 

But the fear never stops. 

When we left for Disney I made up a little sign and used packing tape to laminate it. It went something like, “My name is Boo. I am severely developmentally delayed. I cannot tell you my name or age. If you are reading this, my mom is freaking out. Please call Kerri at XXX”. 

When we got back, I noticed a friend on Facebook was using a Nike product combined with her IPHONE to track her running. I thought, YES This is what we need! Since Boo will not wear a bracelet or necklace and I am at my wits end trying to keep a ponytail in her hair, I thought something in her shoe? That would be perfect.

Unless of course, she threw it in a fire or out of the jeep. Then that would be a very expensive OOPS. But, if it would work for her or in my moment of philanthropy any child/adult who if they go missing would not be able to help themselves, it is worth the risk. We just would keep our promise of never letting Boo wear shoes in the jeep!

So, I wrote NIKE. I got a response which is slightly better than the no reply that FOX News, the Boston Globe or my local newspaper provided when I wrote to Ann Coulter. But still, the reply made me laugh:

I appreciate you writing us with your idea of having a GPS tracker in Children’s shoes. Your idea is wonderful.

At this time, Nike is unable to accept outside ideas. This is primarily due to the problems in adapting those ideas to fit our objective, but also because of the ownership issues, which could be raised if we happened to be working on a similar idea at the same time. Consequently, it is our policy not to share outside ideas and not to use those ideas in any way.

Thank you for your interest in Nike and I hope you have a wonderful day.

Well, at least they hope I have a nice day. And that my idea is wonderful. But really, they cannot accept outside ideas? I know there is probably some legal reason why they have to respond this way. So, Nike just do it, make a product that will keep our kids safe.

I promise you,it will be much more rewarding than making athletes faster.
 

Time just flies….

Boo turned four today. I am amazed how the time has gone. I find it is kind of funny that her milestones are recorded in her medical record. I never really have to wonder when she first sat up, I find it in some EI report or doctor report. This makes filling out the start-of-the-school year forms MUCH easier to fill out.

I am impressed that the mom who wore gloves to change Allie’s diaper (yep, me) now looks at a hazmat and thinks to herself, well Boo is no longer constipated. I can now deal with vomit, drool, heck any type of body fluid with out embarrassment. Heck, I recently changed Boo’s diaper on a bench in the Animal Kingdom. I swear the area was private right before I took the diaper off and around the corner came about 50 other sightseers!

I am still astounded that Boo’s first word was “Allie”. She might still call every woman (and sometimes her father) ‘ma’ but “Allie” is reserved for her favorite person. I love that I know by the tone of her voice when ‘ma’ means “Mommy”. I crack up that a child that has never lived in the city has a Boston accent. I think it is all the times spent at Children’s!  

I am thankful for the doctors, nurses, therapists and teachers that have made Boo all that she can be. Which frankly, was more than any of us could hope. Although, I do think the doctors should send me a thank you note for providing for their child’s private school education! Especially the one who told me spinal surgery was a ‘piece of cake’.

I am so in love with this girl. When I had Allie I was one and done. I never thought I would have the love, the time or the patience to love another child. I am still in disbelief that I do. I think back to those first days in the NICU, when I never imagined that this child who I barely knew would live. When in a moment of sleep deprivation and worry I actually forgot her name for one (I swear, brief) moment. 

I never imagined she would deepen our hearts and strengthen our family. She also strengthened our friendships, new and old. Some friends became acquaintances, true friends became family members. True, faithful friends became our support system.  

Four years ago, I never dreamt that she would have a friend. One with DS who would use the sign for “B” to call her friend, Boo. That this girl’s family would tell me that “J” would use the sign all weekend long. The “B” sign no longer stands for anything other than Boo. That this mom and I would be in awe of our daughters. Two girls with completely different diagnoses would meet and become friends. 

Or that a little boy “E” in Boo’s integrated class, one who it the peer child with a bad-ass attitude, would take Boo under his wing. He sits next to her during snack and helps her. He makes sure that she gets her turn on the slide at recess. Boo has turned this trouble-maker into a hear throb. His mom told me the other day that when we were on vacation, he went into class kicking and screaming.

She and “J”‘s mom asked me not to go on vacation again, without forewarning them.

 Truthfully, I wouldn’t change a thing. Not the 14+ doctors, not the amount of time spent at doctors offices (although I do kind of wish I could change the commute!), not the time spent in therapy. If I had one wish, would I wish that she was perfect? Well, to me, she is already perfect. So if I could make a wish on the birthday cake (that she refused to eat), the wish would be to know her diagnosis, so I could understand her prognosis.

Happy Birthday, my Boo. I love you more than words can say.

And so does everyone who meets you. 

Monday Confessions V9

Monday confessions….five things I fear

That Allie will no longer be in love with Boo. Right now Allie is Boo’s strongest advocate. How do I prevent Boo becoming a burden and not a joy?
 
That I will not be strong or patient enough to be the mom my girls deserve.

That my marriage won’t continue to be strong. It’s already been stressed with longevity and Boo. Did you know that parents of special needs children have a divorce rate of twice those without?

That work will not continue to be understanding about my flexible hours. Especially this week, when my husband is away and I play single mom.


That Boo will never say “I love you”

 

Recovering from vacation….

One of the reasons I am always so hesitant about going away, other than the safety factors when it comes to Boo, is coming home. Now to be honest, I love being home. In my bed. Alone. Did I say that clearly….ALONE as in no child in a 10 foot radius. As in no child’s foot (finger, toe, hand, nose,hair) in my nose, back or any other place they manage to get comfortable. It even helps when we come home and my husband is immediately on duty. Not that I don’t love when he is home…but eight days of togetherness with one or both of our children sharing our bed and each one of us is left with an inch of mattress real estate?

Amazing, how one little girl can take up so much real estate.

Being alone in a closed room…that is dream come true my friends.

Does this dream come true? Well, not so much with Boo. It takes at least 4 nights of “cry it out” boot camp before she realizes that I am not her cuddle buddy. When we got home she was sick, so we warred with do we let her sleep with us where we can make sure she isn’t aspirating or do we decide to initiate project back to sleep without interrupting mine.

Safety won. I slept in her room on the guest bed. Husband got the cherished night alone. Without a child coughing on them, kicking them, drooling on them, having a foot (finger, toe, hand, etc…) shoved up their anywhere. 

But last night? Last night I was determined. Determined, I tell you to sleep. ALONE. 

It did not start off well. She cried for me, for Allie. Telling us she was all done ‘night night’. She started coughing. I was afraid she was choking, but erred on the side if she was crying she was breathing. I listened very carefully to make sure she wasn’t vomiting. I sat firm. On the other side of the door.

87 minutes later. Quiet. (by the way, what is UP with the professionals that tell you that a child will cry themselves to sleep after 10 minutes? I want them to meet Boo!). By 8:30 both girls were in bed. I had a nice glass of wine and a quiet rest was had by all!

Thanks…

Thank you to,

All those who hold me up when I fall down.

All those who look at Boo and see the miracle that she is.

All the doctors, nurses and everyone at Children’s Hospital. It is thanks to you that my child is home and healthy.

Thank you for (put whomever you pray to here),

Allowing me this place to vent, to cry, to rejoice and learn.

Giving me insight and innovations.

Giving Boo the best big sister possible.

Giving Allie the best little sister she could ask for.

Giving me the strength to advocate when needed.

Giving me the patience when I think I have none left.

Giving me the knowledge to know when I do not know enough.

Knowing that I never would have thought I would be a good enough parent to a child like Allie let alone Boo. 

Thank you for proving me wrong.
 

 

Monday Confessions V8

Four things I am thankful for….

Allie had the BEST BIRTHDAY ever when surprised with a trip to Disney by her grandparents. (Although I worry that next year they are NEVER going to meet her new expectations!)

My husband, the girls and I survived 8 crazy days vacationing with my parents. And we all still like one another.

Crazy puppy did not ruin my sister-in-law’s house while they babysat. But my brother-in-law is NEVER allowed to get a puppy.

This photo, because for one moment, Boo was a normal little girl enthralled with a Princess.

 
 There is A LOT more that I am thankful for….but for now this picture says it all.
 

YIKES

Last week, I’m traveled with Boo for the first time on an airline. 

I wrote this post before leaving and forgot (in my temporary insanity) to post it! So here it is with an update….

I am freaking out. I KNOW people do this all the time. That people with children, those with special needs and those who are perfect, manage to fly all around the world without incidence.

But they are not Boo’s mom. Allie’s mom, for sure could fly the world. I have flown with Allie and it has been a great, fun experience. I never had any anxiety or worry. This time, with Boo? I am a nervous wreck. I am worried about getting her through security, about making sure the airline will accept her need to sit in front of the wing to decrease the sensory overload. I am worried that she will disrupt other passengers, because I was one of those judgmental people who used to think can’t that mother control her child? (Stress the WAS) I am worried that my worry will be transparent and stress her out.

How do I combat worry? Knowledge and obsessive planning! I got a note (two actually) from her neurologist saying that she had sensory issues and needed to be accommodated on the flight, in the hotel and at theme park. I called the airline, paid extra for early bird seating and told them I had a handicapped child that would need to be allowed pre-boarding (it was worth the extra money). I called the airport to make sure that I could get her stroller and car seat through security. I printed out a label below to pin to her t-shirt in the event she elopes:

 
Hello my name is Boo. I am unable to tell you my name or my age. If you are reading this my mom is freaking out. Please call her ASAP at xxx-xxx-xxxx. Thank you.
I thought I thought of everything. But yesterday (the day before the day before we leave) she woke up sick, with a fever, a croup cough and general malaise. We took her to the doctor who diagnosed an ear infection and possible bronchitis. I asked if it was safe to fly and was assured that we had enough days to get an antibiotic into Boo to make her comfortable.

So a new round of worries! How do I get the medicine (which needs to be kept cold) onto the flight using a carryon? The way Boo’s luck goes they will lose our luggage before we leave the airport! I recalled my friends at the TSA to find out what the protocol would be. I talked with her about Boo’s sensory issues and the need for a car seat and carriage in the terminal. The lovely TSA woman (I don’t know why they have a bad reputation) was awesome. I must have sounded frantic, because to rest my mind she even e-mailed me the do’s and don’ts.

And this where my sense of humor came back, regarding taking child carriers onto the plane the TSA recommends that:

“Babies should NEVER be left in an infant carrier while it goes through the x-ray machine.  For information regarding what is permitted or prohibited from being in carry-on luggage, please refer to our prohibited items section on our Web site”

Okay, you just know that if this is a disclaimer on the directions that someone MUST have tried to do it!  With my humor restored, we just might survive the flight.  

UPDATE: Boo (and her mom) survived. She did great, even with the ear infection. 🙂

The IEP

Today was the first anniversary of Boo’s IEP. Last year I walked into the meeting having no idea what to expect. This is something else left out of that What to Expect book…..

Last year, when Boo entered the integrated preschool I was not in love with the program. I did not know how to be forceful with Boo’s needs. I didn’t realize that if it wasn’t written on a piece of paper and signed off by 45 different people Boo would not get the level of care she needs.  Within 3 months her teacher realized that Boo needed more, and advocated that Boo continue in the integrated part-time but move to a program dedicated to special needs 1:1 education. Within 3 months of Boo starting that hybrid program she began to talk, interract more and just blossomed.

So, this year, I was more prepared. I read up on how to approach the meeting, what ideas to have at the ready, what concerns I may need to raise. Yes, I obsessed over this meeting.
And I honestly have to say, I was worried for nothing.


I have heard and read about the horror of the IEP meeting. And I am sure that my Polly-anna attitude is due to Boo being in preschool and not the lower elementary grade (or worse, the higher). Our town school system has such a unique program in place to capture children right after Early Intervention.

And it works.

I am lucky to live in a town that understands the quicker you start therapies in the child’s life the more likely chance the child will respond. That is willing to give an almost 4YO an aide, whose sole responsiblity is to make sure that 1. Boo doesn’t escape and 2. that Boo is engaged in the classroom.

What I didn’t understand is why we couldn’t just write, “Reviewed and Renewed” on the IEP. Instead of meeting for an hour, having to rewrite the plan and then send off the form for 45 signatures!

Dads are parents too!

I read this blog  They Walk Among Us posting by Robert Rummel-Hudson. It is a quirky little post about the mystical special needs father. They are such mysterious creatures they could have a support group with the Yeti, Big Foot and the Loch Ness Monster.

Now I know, Boo is an incredible lucky girl. She has two involved parents. Heck most “normal” children don’t have 2 parents who love and support them. Let alone a big sister who tells the babysitter that Boo cannot have peanut butter because it is dairy (well you can see her confusion butter).

Do I make the majority of decisions for Boo? Yes, but her dad is 100% on her side. We split the therapy appointments so we both know what is going on with her. And I am usually the one who stays in the hospital or up with her when she doesn’t sleep. I tend to do the majority of MD appointments. But that doesn’t mean her dad isn’t involved. It just means we have another child who needs a parent too.

He is the one who constantly goes over body parts, comforts her when she is frustrated and will blow bubbles for hours on end. He is more the playmate (to both girls) than I am. But he is never ‘babysitting’. He loves to brag about how far Boo has come.

Because I have an understanding boss and Husband has a very nice schedule Boo’s care doesn’t fall on just one of us. We are both the bread winner and the care giver. This makes it nice because while we get burnt out, we can keep our  rule that only one of us can get crazy at a time.

I’m not bragging because I know I am not alone. Sure I am probably one of the few who’s husband isn’t lucky enough to be home during the daylight hours. But I know there are more involved dads out there.

I for sure know that they are not a mystical creature!