This weekend we went on our annual trip to my husband’s semi-family reunion. It is just a couple of in-laws and cousins. L opens her barn (yep, she lives in a barn) to us the first weekend in August. We drive up with our camper so we have AC and a quiet place to sleep. We play in her pool, eat a lot of food and just catch up with one another. Boo is the youngest and Auntie D is the oldest at 88 years young (side note, she and Uncle O have been married 67 years, can you imagine?).

L’s town does an annual homecoming with a fair and fireworks. Generally the girls and I watch the fireworks from the car.  The fireworks literally go BOOM right over your head and the noise is a little much for both girls. Last year Allie graciously offered to keep me company in the safety of the car. But this year she was determined to film the show.

Not only did Allie take an awesome video (with commentary, of course) and great photos, both she and Boo watched the entire show with the family. Okay, Boo didn’t really watch the show. But in between asking if she could give the lights a hug, she was vocal in telling me “I don’t like” (a whole sentence, speech therapy in action).

A milestone for both girls, watching fireworks!

Boo was on vacation last week from her summer program. Today when I dropped her off I was a little nervous that she would not want to go. Not that being home is so much fun, but that she would have forgotten her friends.

As I stood in the hall with the other vacation weary moms I realized I was not the only one looking forward to drop off. Hey, we love our kiddos but it’s tough being home with them all weekend let alone a full week!

I shouldn’t have worried. Boo left me without a backwards glance!

I HATE packing. Don’t get me wrong, I love going away. I just hate packing. Then add having to pack for 3 people (hubby is on his own) and I see the joy of staying home.

The problem with packing is I always forget something. Like the time we went camping Shenandoah and I forgot Allie’s underwear. The nearest store was over an hour away! Or the time we went to Disney and I packed for Florida weather and instead we got Antarctic weather. Then there was the time I forgot to pack Boo’s stroller. Or the time I forgot the toiletries. The list goes on and on.

My saving grace is there is usually a Walmart within an hour’s driving time.

It has gotten to the point where even remote family members ask if I have forgotten anything “this time”. I am quick to remind people that I have to pack for three people (husband is on his own) not just myself. At least I haven’t forgotten to put the girls in the car!

To compensate I tend to pack, well, enough for an expedition that would last 30 days rather than 2 nights.

This weekend we are going to our annual homecoming at our cousin’s house.  Although the weather report is calling for hot, humid and in the 90’s I’ve made sure (this time) that if it snows we are prepared.

And if not, I have the nearest Walmart logged into the GPS.

A couple of weeks ago I saw information on Yoga for the Special Child. I admit to being hesitant about yoga. I tried it myself years ago and could NEVER calm my mind. I would always be thinking stuff like, darn I didn’t paint my toes or crap look at the way the belly hangs over my pants in this position (not pretty) or worse, what am I having for dinner? Have you seen/read Eat, Pray Love? There is a whole chapter in there about meditation that could have been taken right out of my head.

But, off I went yesterday and met with a wonderful woman whose daughter has Down Syndrome. She used to take her daughter to Yoga for the Special Child and then became a Yogi instructor herself. I think that is the right term, Yoda doesn’t seem quite right.

ANYWAY, as she sat there serenely as Boo buzzed around her studio she went over the benefits her own daughter had seen by using Yoga. The program was designed by Sonia Sumar, a woman whose own child had Down Syndrome. (You can find out more about the program here: http://www.specialyoga.com/)

She did warn me that it would take years of patience and practice to see a difference. She almost gave up herself and then one day her daughter ‘clicked’ with what the instructor had been teaching.

One of the biggest benefits, she told me, was that her daughter’s constipation issue resolved.

Completely.

And she knows it is due to yoga. If they skip a week of yoga, her daughter suffers. But daily practice decreases any constipation suffering.

Now, I am not one to believe in fate or karma but I had never even mentioned Boo’s bowel issues. I mean seriously, how could you in polite company?

I admit it, I will not / can not, stop looking for ways to make Boo have a week without a stomach issue. I have tried diet changes, medications, XLAX, suppositories, Miralax, surgery and physical therapy.

Nothing has worked. Every week we face the same cycle: Constipation followed by diarrhea caused by the medications to relieve the constipation. It is not a pleasant clean-up.

I asked what it was about yoga that would relieve IBS/constipation. She believes (in the interest of full disclosure, no scientific fact) that it has something to do with toning the muscles. That the twisting and stretching of yoga has a direct benefit to the bowel system and gets everything, well…moving in the right direction.

So while I am unsure if Boo will ever calm down enough to sit thru a meditation, she will be starting Yoga for the Special Child as soon as possible.

I hope we have better success than we are currently having with the PECS program.

Most 3YO are like that–Really? Because Allie was once a 3 year old and she never escaped the back yard, the car seat, the class room, etc… Allie must not be the neuro-typical child after all.

I don’t know quite how it happened. It’s not like I don’t have enough to do in the hour, let alone the week, month year. I think it went something like this:

An innocent mom (hey innocent until proven otherwise!) picks up her daughter from school. The assigned aide asks the innocent mom to come to this week’s PTA meeting at the older child’s school. They need someone to ‘just help out’ and take notes at “the” meeting (notice I said “the” and not all”). Would I please just help out?

Two minutes into the meeting and I am voted in as the co-Secretary. But ‘don’t worry’ there is very little to do, 2 hours a month. The meetings are at night (in the school so no adult beverages). During the school year. There is a co-secretary who will do most of the work.

They neglected to mention the planning sessions (who knew, I am part of the executive board!) during the summer. And once a month has now turned into twice a month. The meetings are not 2 hours, but 3-4. With an additional couple of hours back and forth finalizing the notes.

The second meeting the other innocent mom, I mean co-secretary doesn’t show. Doesn’t respond to any messages. Of the 12 member board there were only 5 attendees. I offered to the PTA if the meeting was held in a Pub they would have a lot better attendence–I don’t think they saw my humor.

Last night was the third meeting to “plan” the coming year. The two hour meeting turned into three hours with very little resolved. Other than they “hope” I can help out with three events in August and there is another ‘planning’ meeting scheduled for three weeks.


I cannot even use the excuse that there was wine involved.

Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot .  It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.

In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.

Not only did the parents lose any hope of privacy, so did the other children.

It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.

The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.

But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!

When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.

We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.


When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.

I better make sure Boo’s socks match.

We have completed two days of implementing the PECS program at home. Here is how we did:

Day 1 “Creation”. Those that know me, understand that not only am I the least craftiest person on the planet the mere thought of entering a craft store makes me start thinking that it is 5 o’clock somewhere. First I went to http://www.do2learn.com and printed off the images (easiest part of this project!).

Then off we went, the girls and hubby came to help navigate the sheer quantities of craft supplies (really, who needs that many ribbons?). We picked up the felt, glue, laminating stuff and velcro. I then spent the next couple of hours cutting and laminating the images (this was not as hard as I thought although I see would still fail cutting w/scissors in kindergarten). 

With a sore thumb I began gluing the felt onto the cardboard. This was a spectacular failure. How could I possibly fail at glue? I have no freaking idea. But I bet I am the only one in the known universe who could not get felt to adhere to ANYTHING but my fingers. So instead we ended up with this:

After all this work, it was Boo’s bedtime and my wine time. Day two we are calling the crafty aunt (who Allie asked me to call while we were in the craft store).

Day 2 Boo is upset, I rush right over to the PECS window and try to offer choices. Except I forgot to take Boo with me. Go back, grab Boo and two choices.  Boo do you want bubbles or the ball? She points to the bubbles and I start blowing. As she walks over to the ball. 


This will be a work in progress!

Quick update: Crafty auntie answered my call of distress. Boo’s updated PECS:

 Now that we have the pretty tools, this should work. Right?

It’s funny how life works. At Boo’s recent Augmentive Communication appointment they asked us to retry the PECS system. We failed (in a quite spectactular fashion if I do say so myself) when we tried this about a year ago. Boo would just flip thru the picture book.

But I wanted to try. I just had no idea how. Then as fate would have it, this week at one of my favorite blogs (http://alongcamethebird.blogspot.com/2012/07/goin-old-school.html) the author offered some GREAT ideas of ways to implement the PECS system.

Yesterday at Boo’s regular SPT appointment she broached the idea of using the PECS system. Again, fate conspiring! Boo had finally started to respond (in a limited way) to using them in therapy. We both felt that the more exposure the better rate of success. (Yep, I’m a genius!).

So back to Along Came A Bird (really, you need to read her) and I find an update on PECS ideas. Read about it here (but then come back, okay!) http://alongcamethebird.blogspot.com/2012/07/more-pecs-talk.html#comment-form

Because Boo’s comprehension for PECS is so limited we are only going to use it for choices. i.e. take her to the board and use hand-over-hand to have her decide between two choices. Hopefully (fingers crossed) it will ease her frustration level and we can grow it from there.

Next step, I went to this website our SPT (have I mentioned she is a fabulous goddess!) gave us for free (yep, FREE) printable PECS. It is called Do2Learn and you can find them for yourself here: http://www.do2learn.com/ 

Now, I have them printed I just need to find some one with a laminater, buy velcro and a mat to hang on the door.

Guess I know what we are doing this weekend. And Allie says I’m not crafty.

Okay, I am not and there will probably be some laminating mishap. How bad could it get?

Today I am amazed. Simply amazed. I brought Boo to school and she went right up to  a little girl, called her by her name (Boo’s version anyway) and they hugged.

It was an awesome sight. Boo interracting with another child. Even more awesome, this little girl hugged Boo right back.

Then Boo called one of the teacher’s by name (again, her version but definitely the person’s name) as she passed by. (to be honest, I don’t even know the woman’s name!). She then saw another teacher and clearly said her name (this one I knew!).

The utter joy in Boo’s voice and expression was worth all the worry about this new school program.

There was month’s of anxiety leading up to the new school program. Originally the public school put Boo into an integrated preschool feeling that is all she needed. No one listened to us about her needs, etc… They would not give her an aide and did not start her therapies as directed. Thankfully the teacher in the program is simply awesome and took care of the aide herself and helped us advocate for the services Boo deserved.

In the Spring the teacher recommended a new program, a half-day in the preschool and a half-day with discrete (1:1) program that is dedicated to children with special needs. Those with CP, Downs, autism, undiagnosed like Boo. Okay, she is the only one “undiagnosed” but still the program seemed ideal.

Except I was beyond worried. I was afraid she would regress, that we wouldn’t have the communication we had when Boo was in Montessori.  You name it, I worried about it.

The first week was tough. It didn’t help that they forgot to feed her the first day.

The second week was less scary. It didn’t help that they lost her for a little bit.

The third week was without mishap so our fears were slightly less.

The fourth week, Boo met a friend and knew a teacher’s name.

The fourth week ROCKS!