My Autistic Brain Tumor Survivor

Special Needs and/or Homeschooling Blog Link Up #3

Special needs and/or homeschooling blog link up

Special needs and/or homeschooling blog link upWelcome to the Special Needs and Homeschooling Blog Link Up! I’m so glad you came!  I love hearing from old and new friends each week! This is the safe place for those affected by special needs and/or homeschoolers to share, support, and encourage one another! Please share your awesome and unique story with us!!

This blog link up opens every Thursday night at 11:00 p.m. and closes every Monday at 1:00 a.m. US Eastern time!

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We spent an awesome Saturday with the dream managers from the Dream Factory who came out to visit Bethany to try to discern what her dream might be.

I had a lot of anxiety leading up to this meeting.

I was worried that Bethany would be all grumpy, unfriendly, and just lie in the couch with a blanket over her head when they came to assess her dream.

I was also worried that they might want to give her a big, fancy, and expensive trip that she might not appreciate or even agree to participate in once we arrived at the destination.

But I was ecstatically surprised and delighted when she put on her charm for them! She was sweet, funny, and engaging.

She genuinely enjoyed every single second of the 90 minutes that they were here talking to her and trying to get to know her and what her dream might be.

In the end, we all agreed that the best dream for Bethany would be items to create a calming sensory retreat room for her, possibly with Barney presenting the items to her!

So Exciting!

They are going to put that proposal before the board and let us know in about 3 or 4 weeks what’s going to happen!!

The Dream Factory Managers with Bethany

The Dream Factory Managers with Bethany


Things then took a turn for the worse though, when on Sunday Bethany had a seizure right smack dab in the middle of the basket ball court at club.

Things just kind of spiraled down hill from there.

She was cranky and demanding Sunday-Wednesday. She insisted that she had to have 4 Taco Bell tacos every night for dinner.

We indulged her Sunday, Monday, and Tuesday.

I think she was hangry by those afternoons, because she refused to eat anything at all but 4 Taco Bell tacos on those days and then she didn’t even eat them until about 7:00 pm.

She refused to go to her activities on Monday and Tuesday, preferring only to get her Tacos and run!!

And when we refused to allow her to eat anymore tacos on Wednesday, she refused to go music Class.

Late Wednesday night she finally agreed to eat some home made refried bean tacos and Thursday she didn’t once ask for Taco Bell at all and ate home made tacos again for lunch and then ate tofu-veggie stirfry for dinner!

She was not at all crabby Thursday! In fact she was cooperative and happy as a clam all day until bedtime.

Hopefully she’ll continue on being happy!

Weirdly though, on the way to bed Wednesday night, Bethany just fell right down in the middle of the kitchen! It was very odd and frightening.

I heard a thump and found her slumped up against the freezer with a sort of stunned look on her face. Then she got up, walked into the bedroom and laid across the bed for a few minutes before carrying on with her normal bedtime routine!

I am worried that it was a drop seizure!

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In case you missed them:

  • I want you to know that when you see my daughter having a melt down and assume that she is a brat it hurts and it’s heartbreaking., because my beloved, precious, special needs daughter is so much more than a melt down. When people see my special needs daughter having melt downs, they often make the assumption that she does nothing but melt down 24 hours a day, 7 days a week. When people see our daughter having a melt down they automatically assume that she is just spoiled. They often mistakenly imagine that we basically just sit around, twiddling our thumbs and making excuses for her bratty behavior! No one who does not spend a substantial amount of time with our daughter can claim to be an expert on her behavior. A person cannot be summed up and labeled as a “special needs brat” based only on seeing him or her at their worst, most vulnerable moments when they are going through traumatic experiences, enduring unbearable sensory overloads or they have otherwise been pushed beyond their limits. Please continue reading at: My Daughter is More Than a Melt down
  • While we’re on the subject of brain tumors, which can be found in various parts of the brain, I thought it would be beneficial to talk about the anatomy of the brain and the various functions of each part. When Bethany was diagnosed with a tumor in her cerebellum and later a stroke in her parietal and occiptal lobes and seizures in her frontal and temporal lobes, it was important to me to understand what functions these parts of the brain controlled and how damage to these areas might affect her development. Please continue reading at: A basic Anatomy of the Brain.
  • It’s still brain tumor month here at Faith, Hope, and Love and today I’d like to discuss brain tumor statistics with you all. Most people think that the chance of being diagnosed with a brain tumor is so rare that it could never happen to them or anyone that they know. However, as we unfortunately discovered, brain tumors are not actually all that rare and can happen in families just like ours. Even doctors, as we personally discovered, often misdiagnose brain tumors because their symptoms match those of many other common and non-life threatening illnesses. When my daughter, Bethany was diagnosed with a pilocytic astrocytoma, I remember thinking, “This can’t be happening to us! This kind of thing only happens in cheesy, tear jerking TV Movies of the Week, or to people who write stories for Reader’s Digest!”!” Please continue reading at: Brain Tumor Statistics.

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Well enough about us!


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8 Comments

  1. Chris Tilley

    I am glad the meeting with the Dream Factory people went so well. When Philip met for his dream (age 4) he wanted to go on a real train ride and a real rollercoaster. We took Amtrak to Southern California and Legoland. They knew that he was too short for the coasters at Disneyland.

    I just went and read about drop seizures. Scary. Hopefully that wasn’t what it was. I will keep her in our prayers.

    Reply
    1. Sylvia (Post author)

      Sounds like Philip’s trip was awesome! I’m hoping it wasn’t a seizure as well. I’m hoping maybe the cat ran in her way and tripped her. That almost happened to me one night!

      Reply
  2. Phyllis at All Things Beautiful

    I think all the posts you have been writing from your heart lately are some very valuable things to get out there. I know all parents of special needs kids have gotten the attitude from other parents that we are just indulging our kids. I think we all need to hear now and again that we are doing the right thing to cater to their needs. They are needs, not desires. I am glad that it went so well with the Dream Team and it sounds like it will be wonderful for Bethany. Perhaps you can write some posts about what benefits are out there for people to get and what they need to qualify. You seem to be very good at finding them.
    I am sorry to hear that the seizures are plaguing her and that there might be a new drop seizure beginning as well. I will pray for you all about that.

    Reply
    1. Sylvia (Post author)

      Thanks Phyllis. I think when the disability is not a visibly identifiable one, people don’t want to believe it really exists. Most people are willing to bend over backwards to accommodate people who have physical limitations, but they do not want to accommodate someone who has sensory needs or low meltdown thresholds, because they think they are just being brats. I’m publishing a post on the Dream Factory tomorrow.

      Reply
  3. Karen

    I’m so glad that meeting with the Dream Factory went so well and I hope and pray she is able to have her ‘dream’. I am so sorry that she didn’t do well Sun-Wed. Prayers for you and your girl. I have missed reading your blog. I am going to make more of an effort to update mine. <3

    Reply
    1. Sylvia (Post author)

      It’s so good to hear from you again, Karen! I’ve checked in with you a time or two and now I’ll be sure to check in more often. I thought I was already subscribed to you, but I guess not, so I’ll do that today!

      Reply
  4. Jessy at Our Side of the Mountain

    I’ve never heard of the Dream Factory! Very interesting! My Sam would love a sensory room with swings and scooters and a ball pit…and quiet. Even though he is much more regulated now, he continues to love all those things he did at OT and Astronaut Training (spinning). It’s great to see Bethany excited!

    Reply
    1. Sylvia (Post author)

      I’m posting about the Dream Factory tomorrow! Maybe Sam would be eligible for a dream, too! Check it out!

      Reply

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