We had a little normal

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.

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This weekend we had a sense of normalcy.

Bridget made coffee cake. We did laundry (not as much as most weeks, bonus!). David and I went for a hike in the woods (a lot more people in there than normal) and reconnected as a couple. Continue reading

Friday, time to wine

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.

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If we were having a glass of wine, I would tell you how this third week of the pandemic is going.

I would tell you that being a working mom is still tough, but it is much easier to get to work in the morning when you don’t have to make lunches or fight with the kids to get out of bed.

I would tell you that my children have been in pajamas the entire week (they have bathed), but the amount of laundry has significantly decreased. Continue reading

Welcome to life with Autism

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.  

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I saw this on FaceBook the other day and felt it best described Autism Awareness Day:

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Bridget lives on a routine. She does not understand why she is not going to the Y on Friday. She thinks she is on school vacation because the bus hasn’t come. She knows it is Thursday and is wondering why she does not have therapy. I’m lucky because she is not so rigid that this is causing a behavior (yet). She is used to our life which is generally barely controlled chaos. School was her savior because the routine never fluctuated.

It’s not an easy life, living with a child who has autism.  With the “social distancing” and the disruption to all of our routines, I’m beginning to understand how vital structure and routine are for Bridget. I’m hoping it will make me more patient and understanding as we navigate this new reality.

Well played Autism Awareness Month, well played.

 

 

Unlicensed Home Physical Therapy

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.  This will be a continuing series as we navigate how to parent a child with significant special needs.

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I am not a licensed Physical Therapist.

I am very lucky to have friends like Leah.  Leah was Bridget’s first ever physical therapist. She taught me how to have alligator arms to encourage Bridget to take her first steps.  Last week she taught me a way to teach Bridget her letters and do some physical therapy. Continue reading

What questions should we be asking?

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.  

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Bridget is very lucky. She has forged relationships from her first ever therapists (SPT, OT, PT) through her most current ones. Like parents, these therapists feel helpless during this pandemic that have left them home and our children without any (or limited) education and therapy.

Two of them that I admire most asked me recently to start a dialogue. How can they help us help our children. One previous therapist told me, I worked too hard with Bridget we are not going to let this pandemic break her. Continue reading

Special Education, homeschool style

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.

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I have a child who has lost all special education.

I am not an educator and I am not a Special Educator.

I am not a stay at home mom. I work full-time (yes, even now during the pandemic). Continue reading

We need a plan

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.  

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We are gearing up for online learning with Bridget. Her SPED teacher sent a few video links and set up up in Google classroom.

I played the video. An immediate shut down happened. We videoed the shut down and behavior that the video of seeing her teacher caused. (I am not going to share it to protect her teacher’s privacy). It looked like this… Continue reading

I lost 10 years

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.  

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At Bridget’s IEP meeting in the fall I warned the team that I wanted to begin now preparing Bridget to be as independent as possible. Continue reading

We might not be there

When you have a child you never worry about them outliving you. Heck you hope they do. I have big plans for Abby. Not huge ones. I don’t expect her to mediate world peace, I am not hoping she has a Walton family, I just want her to be a productive member of society and happy. Being happy is important.

As with so many milestones, Bridget is different. Continue reading

Happy PACS1 Day

February 7th is PACS1 Day. It’s true, the Governor declared it in Massachusetts. Also the PACS1 parents have declared it world wide. We are a small group of dedicated parents. I am not always sure if I ever give enough credit to the parents of our group. A group that has grown from 13 (when I joined) to over 130 families in the world. And some of the PACS1 parents are not (gasp) on Facebook. Continue reading