Our friends have a house at the beach. Every year we go and freeload for a couple of days. Allie is always excited to go and so am I. Who doesn’t love a beach house? Cocktails, sun, sand, surf and a clean bathroom you don’t have to share with strangers.

Boo would rather be in occupational therapy. She hates the beach! The past couple of years have been torture for her. Last year was probably the aha moment where I realized that Boo not only had sensory issues but that they could and would be paralyzing.

This year was much easier for Boo. During low tide, as far from the water as possible. She stood on the hard-pack sand!

 All Allie wanted to do was surf

Even crazy puppy got in on the action (Boo was no where near the water, preferring to stay at a safe distance!)

As the tide came in, Boo felt that it was safer back at the house, so she stole Allie’s board…

 But Boo spent the day at the beach and was content to go home and relax with her pup

 We are going back this weekend. We hope to get Boo a little closer to the water!

This first week back to school has been hell. No other words for it! Let me list the ways I have made mistakes this week:

Yesterday was the 75th anniversary for SPAM. Allie asked if we could have a celebration because she loves SPAM. This is the meal of choice when I am not home. My husband makes Allie & Boo SPAM sandwiches, SPAM with Mac & Cheese, SPAM with hot dogs, SPAM with SPAM.

No offense to SPAM lovers out there. But I just do not get it. First, it smells up the house. Second it has this weird gelatin thing on top. Lastly, it looks (and smells) like cat food.

I admit to being a picky eater. Although I have grown in the years to like a variety of foods, as a child I was impossible to feed. My husband thinks I still am! Becuase of this, I was determined to expose Allie to a variety of foods. And failed. She will eat chicken in a nugget form, but heaven help me if I roast a bird and expect her to eat it.

Boo was more difficult as she had feeding issues, allergies and the list goes on. I always tried: avacado, meats, stews. Her feeding therapist was adamant that we explode her palate with flavorful foods so that the food would ‘wake up’ her mouth. Now that we have worked out her allergies and given her solid food and graduated feeding therapy I thought we were in the clear. That I would have a child who ATE and ate well.  But again, she will only eat chicken in a nugget form!

Yet they both love SPAM. I guess in a way that it is a nice bond they have with Daddy.

But my snarky side thinks that anything odd about the girls is from their daddy and not my fault! 🙂

Today was Boo’s first day in the summer program. She is in a half-day integrated preschool followed by a half-day of one-on-one special needs learning. I was really nervous dropping her off because she has been out of school on a 3-week break. Usually we have regression issues as she forgets what she is supposed to do in the program.

I thought for sure there would be an issue with drop-off as for the summer program each teacher works 2-days a week. The teacher today was not Boo’s normal teacher, nor was she in the same classroom that she is acclimated.

It was complete chaos when I dropped Boo off. First there was about 25 children just running around. The teacher could not tell who was coming and who was going. I bring Boo into the room in her stroller as she cannot walk long distances. Thank goodness! She would have been lost in the mix.

And then the teacher told me that she Boo not supposed to be there. There was some mix-up and she thought Boo was only there two days a week, today not being one of them. Hello? We had how many meetings about this program!

Thankfully Boo’s aide (the one the school didn’t think she needed) was present and stepped right in. She explained that she had been assigned to Boo for the day in both programs. She unbuckled Boo from her stroller and off they went to the stair climber.

So while I had anxiety about drop-off, apparently Boo did not!

But this being summer vacation, Allie has to attend Boo’s therapy appointments. Yesterday was a LONG day. She had SPT and OT back to back. Since Boo would much rather do pool or physical therapy, Allie’s attendance was a HUGE advantage. After a half hour coaxing, Allie got Boo into the ball pit!!!

Yesterday I just wasn’t quick enough. I had given Boo her morning medications and everything was fine. Until the Ex-Lax. Just as I turned away she took it out of her mouth and POOF it was in the puppy’s.

This was just as we were walking out the door for a 3 hour therapy session. I locked the puppy in the breeze way and hoped for the best.

After therapy I returned home and realized hoping for the best just wasn’t good enough.

Lesson learned: never, ever, ever walk away from Boo after giving her medication!

I really TRY no t to compare Boo to other children. I just don’t often succeed. Take last yesterday. While other children (including Allie) were enjoying the fire department muster, Boo was to overwhelmed to participate. I tried to take her off to the side to play in the foam, but she could not over come her fears. Too many people, too much foam, too much noise. I don’t know which of these factors were too much for Boo, because she cannot tell me.

It is so difficult not to think, look at those little ones rolling in the field. They are having so much fun. Watching the utter joy on the other children’s faces as they played with the water and foam I had to continually remind myself of Boo’s progress this year. At least this year, she watched from afar. She kept calling for Allie to come out of the fun, certain she was in danger. But she wasn’t crying or clinging to my arms. She just wanted to watch and laugh from a safe distance.

It was the well-meaning family members that bothered me. Trying to force Boo into a situation she wasn’t comfortable. Trying to force her to touch the foam or play in the water. They were trying, I know, to help. 

But they were not helping. 

They just think this is something Boo will outgrow. They do not understand that the hours of therapy a week are necessary. That Boo needs to explore the world at her own pace. You cannot force Boo to do anything. She has to wait and make sure it is safe (thankfully Allie is a willing guinea pig). Boo does not like for you to take her shoes off and make her walk onto the grass. That it took me a week for her to be able to wear the crocs in the first place, so please do not remove them!

They do not truly understand that the doctors, surgeries, procedures, therapies are essential for Boo’s life. And that they are probably unending. A friend actually said to me that Boo was a typical 3YO, why is she in so much therapy. Then I pointed to the actual 3YOs that were playing with the firemen in the muster.  The ones who were playing on the playground unassisted, going to the ice cream truck and eating without a problem. If Boo wasn’t in so much therapy she wouldn’t be rolling over let alone walking.

I understand that all children reach milestones at different times. I just wish well-meaning friends and family would begin to understand that Boo’s milestones may be in the distant future. They should rejoice in where she is, not where she should be.

And so should I.