My Autistic Brain Tumor Survivor

Bethany Goes to Day Program!

day habilitation

Bethany is almost 19!  Wow!!  She’s an adult now!

She’s an adult with profound disabilities who has aging parents.

The time when my husband and I will no longer be able or even be alive to take care of her is getting closer by the minute!

My own severe arthritis already renders me unable to keep up with her or take her anywhere in public without a helper.

But since we want her to continue being active in her community as we get older and get some practice letting others take care of her we had to come up with a plan!
day habilitation program

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Many of you know that Bethany had several happy years with her awesome assistant, Kristin, who took her out to the movies, the pool, the library, and shopping etc.

Kristin also spent time taking care of Bethany at home while Malcolm and I went out into the community as well!!

But Bethany’s time with Kristin sadly came to and end and we had great difficulty finding someone else to fill her shoes.

Actually, Kristin is irreplaceable!

Then all hell broke lose and I broke my shoulder.

I was forced to live away from Bethany for about 2 weeks until she could handle the fact that I would need to keep my sling on until the doctor said I could take it off.

Bethany was forced to do without me and let others help her.

Unfortunately, we still could not find an assistant to help out in our time of great need,  so her sisters, Rachel and Rebekah stepped up to the plate!

Her brothers, Jerry and Nate even pitched in!

It was rough, but somehow we muddled through, but not without Bethany becoming very depressed!

She became uninterested  even in doing the activities that she has always  loved.

All she wanted to do was lie on the couch with a blanket over her head.

Something had to change and fast!

It was heartbreaking.

So, in addition to trying Bethany on an antidepressant, we made the decision to try sending her to a day program.

We thought we’d start her out slow and gentle.

We took her up there for several visits before sending her alone.

When we felt she was ready to attend on her own, we picked the one day a week that the program often takes trips out into the community because we thought she’d enjoy that the most.

I really did not think she would cooperate with our plan.

But on the big day she shocked us all by acting excited and getting ready to go!

When the big white bus rolled into our driveway, she didn’t hesitate!

Her parting words to me were, “Take a shower now and put on your pink shirt!”

Then she climbed up into the bus and never looked back!

It’s been three weeks now and she’s still excited about going!

She often asks when it’s going to be program day again, which is a good indication that she is eager to go again!

When she comes home she says she had fun and actually gives me a few details about what she did there!

Infact, today she told me that a new boy named George came and she shook his hand.

She also colored pictures of Barney and went outside to play baseball and swing!!

And according to her teacher, she is a great dancer!

Take a look at this super encouraging note that her teacher sent home.

Then, on top of all that goodness we finally found another awesome assistant for Bethany, who will be working with her for 20 hours a week!

We are so thankful that life is finally getting back on a happy track for the Phillips Family!

Thanks be to God, our crappy is finally turning back to happy!

 


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2 Comments

  1. Phyllis at All Things Beautiful

    I know how you feel about being aging parents with an adult child with severe disabilities. Fortunately, Alex seems to be a bit more willing to adapt than Bethany and our older kids are willing and able to care for him. The younger two are even beginning to pitch in with his care. They all say that they will work together to take care of Alex as we become unable to do so. I only worry about how it will work without interfering too much with their own adult lives.

    Reply
    1. Sylvia (Post author)

      Thank God we both have lots of kids that love their special needs sibling so much! I do worry that future spouses might not want to help out, though. But so far so good. All my kids spouses are very sweet to Bethany.

      Reply

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