Education | Lessons from my daughter

Yes, Emily said that over the weekend.

She was upset about something and informed us that she was planning on moving out.

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I moved away for school when I was 17 so technically, she could be moving out next year.

Technically, in another world, she would start Grade 12 next year and within a year could be moving out.

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I’m sad she won’t…

And

I’m delightfully happy she won’t…

I’m conflicted!

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Emily hinted before at the possibility of moving out but it was never like it was this weekend.

She made her announcement while sitting at the table waiting for food to be deposited on the table in front of her.

Life is hard in our house!

I get that the other kids at school are talking about career choice and going away to University. Hearing those things make her think.

I can’t squish her dreams and aspirations for a carreer or for one day moving to an apartment.

So, how did I handle the moving out comment?

I said:

Ok baby, if you want to be ready to move out next year we need to get you ready.

We need to look at how much money you will need to pay rent, electricity, internet, tv and your phone bill.

She looked confused.

We will need to make a budget so you know how much money you need. You will need to earn your money because I already pay for everything here, I can’t pay there too.

She just kept looking at me.

Next, we need to figure out how you will get to school. I won’t be there to drive you around so you will probably need to learn how to use the public bus system. Maybe we can start looking into that soon.

Complete silence.

And we should start looking at things to do around the house… Cooking, cleaning, laundry… Finding your way to the laundromat.

“Well, I’m taking a dog!”

Which one?

Maple!

Ok, well keep in mind, she has a nervous bladder and likes to pee on furniture so you will need to keep that under control.

She didn’t look as excited about moving out anymore.

What about night time? Will you be ok on your own? You should start staying home on your own for small amount of time so you can slowly get used to being on your own.

…

“Mom? I think I’ll stay here a little longer!”

Yes, life is not so hard here after all…

Today we chat with Brooke!

Hello Brooke, can you tell me about your family?

We are a family of 5, my husband Shane, Kali, Kera and Kasi! Kali and Kera are 6 year old twins, Kasi is 1 1/2 years old! We live in Avis, PA! I’m a stay at home mom!

Can you tell me about your daughters who have cri du chat syndrome?

Kali and Kera both have cri du chat syndrome! We found out Kera has 5p- when she was 7 months old and we found out Kali had 5p- when she was 10 months old! Kera is our adventurous one, she crawls, walks with a walker and recently started walking with one hand held! She is nonverbal and not potty trained yet! Kali is more content being left alone playing with toys that play music and light up! She doesn’t crawl or walk! She had corrective surgery on her foot in Feb 2015 and we are using an up and go to try and get her walking! Kali doesn’t do anything on anyone’s terms but her own, some days we can get her to walk in the up and go like she’s been doing it for years and some days she acts like she has no clue what she is supposed to do in it!

Tell me about doctor appointments, therapies and/or school?

Our doctors appointments for the most part have dwindled off! Kera still sees her neurodevelopment doctor every 6 months because she is on risperidone, Kali sees him every 2 years! They both see there PCP every 6 months still! Every other doctor, orthopedics and cleft clinic(Kera), we see once a year! Their ENT dismissed us now that Kera doesn’t have ear infections anymore and Kali got her tonsils and adenoids out! We drive 2 hours for orthopedics and cleft clinic, 1 hour for our neurodevelopment doctor, I did research and found the best doctors closest to us for the girls! They get PT, OT and Speech in school and then I take them to outpatient PT and OT once a week and I take them to Penn State University once a week for speech also! They absolutely LOVE school, they love being in their mainstream classrooms with all of their friends and they love being in their multidisabilities classroom too because they get to be on the floor and do what they want for a little bit!

Cab you tell me a success story?

We FINALLY got Kera to walk with one hand held, after years of trying! We are getting Kali there, like I mentioned above, she is our stubborn one and only does stuff on her terms and nobody else’s!

Is there anything else you want the world to know?

Our kids understand more than people think they do! Just because they are nonverbal doesn’t mean they don’t know what you are saying to them! If we are talking to them and tell them something funny they will laugh before we do!

Kali
Kera