Posted in Autism, Bethany Moments, Special Needs Parenting, Uncategorized

She’s a Control Freak!

It’s no big secret that my daughter, Bethany wants to be in control of…EVERYTHING!

Most of the time this really doesn’t bother me because I understand why.

I mean, when you really stop to think about it, her whole life has pretty much been out of her control ever since it was taken over by a great big, nasty brain tumor when she was just a baby!

She had absolutely no control over anything that happened to her body while doctors saved her life from the afore mentioned brain tumor.

And let me tell you, most of those treatments were pure, physical torture and there were many of them over a two month period.

If I had done to her what those doctors did, I would have been arrested for child torture and put away for life.

Then you add a life long unpredictable and untreatable seizure disorder into the mix and it’s no wonder she feels compelled to fight for every little shred of control she can get.

So, I’ve tried to let her have control over as much as possible.

She is twenty, now for cryin’ out loud, and even though she is developmentally only about age two, she does deserve to make as many of her own decisions as she possibly can.

I must be ever so careful though, because she also forms rigid routines very quickly.

It seems like if she does the same thing twice, we run the risk of it becoming a rule, written in stone, that her OCD and need to control will not let her waiver from!

And so now, because I let her pick out my outfits a few times she thinks she can dictate to me what I will wear everyday…even what color underwear!!

What started out as a fun little “fashion” activity for us to do together has become an obsession!

I know I need to get a handle on this because it’s getting out of hand.

However, it’s a delicate situation for sure, because even though 99.9% of the time, Bethany is as sweet as pie, she does get aggressive at times!

If you have any suggestions please do tell!!
Thanks so much for stopping by!

If you have a minute, please check out our Etsy Shop where you can purchase handcrafted junk journals, instantly download prints of vintage ephemera and copies of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

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Posted in Autism, Bethany Moments, My Vlogs, Special Needs Family Life, Special Needs Parenting

Helping My Autistic Daughter Cope With Change

One of Bethany’s most significant struggles as a person with autism is handling change.

She wants everything in her life to always be the same!

A change in her routine, throwing away old, worn out clothes and accepting new ones are tough on Bethany.

Even a change in her environment, like getting a new kitchen table, for example, can be extremely hard on her emotionally!

Our recent move into a new house in a new city has sparked a bit of anxiety for Bethany, even though she had been looking forward to it for a very long time!

For the first two weeks, she coped with her new environment amazingly well!

Before we moved, I had shown her pictures of bunk beds online and asked her if she wanted one for the new house and she did!!

She talked excitedly about getting her new bed for days and when we finally got it she was thrilled!

My husband and I anticipated that she would have a change of heart when we took apart her old bed and drug it away.

She shocked us, however, by excitedly climbing up to the top bunk and happily settling in.

She even slept all night, which is highly unusual!!

She also surprisingly, had no issues with getting a new couch.

But then one day we decided to hang up curtains and for reasons known only to her, she freaked out and had a very aggressive and potentially destructive tantrum.

She did not want those curtains hung up and she let us know it!

However, we didn’t back down and  a month later, other than occasionally asking if I can take them down and me telling her no, she has accepted them being there without further incident.

At about the same time as the curtain incident, Bethany started waking up twice a night, every night.

Her need to control everything has also magnified, especially her need to try to control me.

She even tries to dictate to me what outfit I should wear each day, including what color underwear she wants me to wear!!!

TMI, I know!!

The latest issue we’ve had actually happened just yesterday.

We bought a new smaller kitchen table and chairs that fits better in our new smaller house.

Bethany watched Malcolm take apart and remove our old table and chairs without a problem.

She watched him put together the new one without even so much as a hint of distress.

It wasn’t until we put the new table and chairs in place that she blew up!

She wanted the old table and chairs back and was willing to fight for them!

She threw a few things around and threatened to pinch me.

Her tantrum didn’t last long, thank God, but she was grouchy for the rest of the night.

She kept moving the new chairs into another room.

My husband and I decided to leave them there and he would put them back in place before she woke up and he left for work the next day.

It’s now 3:30 the next day and she seems to have accepted them.

Anyway, that’s what I’m optimistically assuming because she hasn’t said a word about them all day.

With all that being said, when I know a change in Bethany’s life is imminent,  I’ve learned to try to prepare her ahead of time for the transition.

A feat which can be tricky, because there is a fine line between giving her enough time in advance to successfully process the change, while, at the same time, not giving her too much time to stew about it, which can end up causing her even more anxiety!!

I’m certainly not saying we’ve cured Bethany’s dislike of changes, but below are some suggestions that have helped and might help others with autism cope with changes in their lives as well.

      • Social Stories: I am a big fan of social stories. In Bethany’s case I use photos or realistic drawings to explain to her ahead of time what kind of change she can expect to happen soon.
      • Timers: For transitioning from one activity to another in her daily schedule I’ve had great success using the Time Timer. This timer lets Bethany see time passing. She knows she must change activities when the red part is all gone. I have to be careful to put the timer up high enough that she can’t reach it though, or she’ll keep giving herself more time!!
      • Create a fun transition signal: I use counting to prepare Bethany for changes in activity.  For example: When it’s time to get out of the tub, I tell her that I will count to 20 twice, say, “Peek a boo Bethany”, ( She likes to hide behind the shower curtain while I count) then it will be time to get out.
      • Practice changes: Practicing the gradual acceptance of small changes in Bethany’s routine, activities, and environment has proven to be very helpful in helping her deal with the more significant changes in her life that cannot be avoided.

I truly believe that Bethany’s attendance at Flash Club, a social club for children with autism, has played a huge part in helping her accept changes better.

She participates in several eight week sessions of activities on a rotating basis. At first changing activities was very stressful on her. She melted down a lot!

But concentrating on one activity for eight weeks gives her plenty of time to enjoy each activity while also processing the idea that a change is coming.

Now she realizes that changing activities gives her more fun things to do and she looks forward to each new activity.

In the video below, my husband and I discuss the potential change to Bethany’s environment!

* A version of this post was previously published in February 2015.
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Thanks so much for stopping by!

If you have a minute, please check out our Etsy Shop where you can purchase handcrafted junk journals, instantly download prints of vintage ephemera and copies of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

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Posted in Bethany Moments, Holidays, Siblings of Special Needs Children, Special Needs Family Life, Special Needs Parenting

Our Autism Friendly Christmas Festivities

Each year, just after decorating our Christmas tree on Thanksgiving, I start thinking about what holiday activities our daughter, Bethany might enjoy and be able to tolerate.

For those who may not know it, Bethany has autism.

She’s also a brain tumor survivor and has developmental disabilities and seizures.

Even though she’s 20 years old now, she still usually enjoys little kid stuff!

Though sometimes she does surprise us by enjoying more age appropriate activities.

So, it’s not always easy to come up with activities she might enjoy doing.

We usually figure it all out by trial and error!!

When Bethany was younger she loved visiting Santa, so we took her every year.

But last year, whenever we drove past Santa’s igloo and asked her if she wanted to go see him she said no every single time.

This year, however, when we drove past that old familiar Igloo and saw Santa walking down the sidewalk, she got super excited and wanted to go see him.

Luckily, he was heading straight toward his igloo!!

She had a blast visiting him and in fact, the very next day she asked her aide take her to see him again!!

For those that may live near Norwich, NY,  in my opinion, this Santa is the best one to take kids with disabilities and little kids to.

There is almost never a line and Mr. and Mrs. Santa were super sweet and accommodating!

autistic girl sitting on Santa'a lap

For many years, Bethany also enjoyed riding the Christmas Carousel in Johnson City, NY.

This is just a fun night time ride with Santa.

They turn off the overhead lights during the ride so everyone can enjoy the Christmas lights better!

But two years ago, when they turned off the lights, Bethany flipped out and changed her mind.

She refused to ride and actually let it ruin her whole night.

Because it’s so far away and Bethany still hates having the lights turned off, we’ve decided not to try again for awhile

No sense in chancing making her miserable again.

Happy to be on her way to the party!

But one Christmas activity we can always count on Bethany enjoying is our annual ugly Christmas sweater cookie decorating party with her sister Rebekah and brother-in-law, William!

This year was no exception!

She was so thrilled to give Rebekah and William the presents she had made for them.

She enjoyed eating her 5 pieces of pizza and feeding Sophia the hamster some treats!

She especially loved checking out Rebekah’s manger scene and little Christmas village.

After watching, The Christmas Chronicles, on Netflix, she and William had a little dance party, then we all settled down to decorate our cookies and gingerbread house!

Keeping the gingerbread house from falling apart proved to be a bit frustrating, but brother, Jeremiah solved that problem by duct taping the insides of the walls together!!

All too soon, the party was over and it was time for us to say our goodbyes.

But we’ll all see each other again on Christmas Day for dinner at brother, Josiah and sister-in-law, Katy’s house along with a whole bunch of other people Bethany loves!

Do you have any holiday traditions you enjoy doing each year?

 


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Thanks so much for stopping by!

*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at no extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

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Posted in Autism, Bethany Moments

I am a PushmePullyou

A long, long time ago, in a galaxy far, far away I saw the original 1967 version of the Dr. Dolittle movie!

Just about the only things I can really remember about that movie are Rex Harrison singing, “If I Could Talk to the Animals” and that crazy PushmePullyou!

The PushmePullyou was an animal that looked kind of like a llama with two heads.

It had two sets of front feet, one set on each end.

This poor animal couldn’t go anywhere because both ends of it wanted to move forward!

As the mom of an autistic daughter who is also a brain tumor survivor, I often feel just like that PushmePullyou, especially when I am faced with making decisions about her and for her!

Just when I think I’ve come to a firm decision and move forward, I have second thoughts and step back.

I feel like I’m damned if I do and I’m damned if I don’t.

My husband and I can come up with plan after plan and make decision after decision about Bethany’s medical treatment, her behavior treatment, her education, her therapies and her future.

Then just when I think we’ve really made our final decisions, BAM!!! all the doubts, fears, worries, and what ifs come flooding in and I begin to think about all the bad things that can happen if we carry through with those plans.

We could have sent her to school on the bus in which by law only a nurse could administer the life saving medication she needs to stop seizures.

However, we would have had to fight the school district to provide said nurse.

And besides… I was not at all comfortable with a stranger exposing my daughter’s teen age derriere on a school bus to administer this RECTAL medication anyway.

Nor was I at all confidant that I would actually be able to make Bethany get on the school bus in the first place if she decided that she didn’t want to do so.

Should we we pull up roots after 32 years of living out in the beautiful countryside, sell our house and move closer to a city?

In the city it might be more convenient to find staff to work with Bethany and be easier for her to participate in community activities so she can have a more fulfilling life.

Should my husband and I send Bethany to live away from us in a group home in preparation for our eventual deaths?

Should we give her certain medications and hope for the best?

Or should we decide against them because they might damage her liver, make her aggressive, or suicidal or even kill her with a fatal rash?

If she were to suffer any of these side effects we would never forgive ourselves.

On the other hand, if we don’t try these medications we will always wonder if our decision has prevented her from having an improved life free of seizures and behavior issues.

So you see…I’m damned if I do and I’m damned if I don’t.

Because, no matter what decisions we make concerning Bethany’s health, well being, and future, there will always be pros and cons, there will always be regrets, doubts, and what ifs.

I will always wonder if the other decisions… the ones that we abandoned, would have been the better choices for her.

I will always wonder if because of decisions that we did or didn’t make whether we have prevented Bethany from having the happiest and best life possible.

I will also always wonder if because of the decisions that we did or didn’t make whether we have prevented our other children from having the happiest and best lives possible.

So, you see, I will forever be a PushmePullyou.

*(A version of this post was first published in June 2013.)

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Thanks so much for stopping by!

*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at no extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

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Posted in Bethany Moments, Holidays

6 Tips for a for a Happy, “no meltdown” Holiday

Getting through the holidays with a loved one who has additional needs can sometimes be tricky!

Many families with sensory sensitive members actually dread the coming of the holiday season.

Changes in routine, traveling, large and crowded family gatherings, noisy celebrations, and even unfamiliar smells can all wreak havoc on our kid’s sensitive sensory systems triggering extreme overload and major meltdowns.

My own daughter, Bethany, is an extreme creature of habit and a total control freak!

She wants her routine to always be the same, and she wants every person in her life to always be in the place that she has designated to be theirs.

Changes in routines–hers and everyone else’s can throw her into an anxious, angry, and aggressive tailspin.

She can barely stand it when her sisters have to go to work.

In her mind they should be sitting by their phones waiting for her to call them. All. The. Time.

When her brother is not in his usual place playing games on his computer she goes looking for him.

She even tries to control where the cat can and can’t roam!

By now you’ve probably guessed that celebrating holidays is hard on Bethany and even harder on the rest of us.

If it was just Bethany, my husband and I, we would be content just having a quiet holiday at home with the most minimal of changes to our routine.

But since we have eight other kids and two absolutely adorable grandchildren to consider, we can’t, nor would we ever even want to exclude them from our holiday festivities just for the sake of avoiding a difficult day.

That would be just too darn sad for all of us.

Over the years we’ve tried different coping strategies in our attempt to keep holiday anxiety and meltdowns to a minimum.

Without a doubt, each of the following tips has been successful for our family at one time or another.

Tip #1: Stay home for the holidays. If your loved one is most comfortable in his or her own home, then plan on staying home for the holidays if that would afford you the best chance of having the happiest holiday possible.

Tip # 2: Go somewhere else for the holidays. Our daughter, Bethany, actually does better spending Christmas away from home!  The last couple of years, our very large family has been gathering at our son’s house for Christmas dinner. This arrangement works out much better for us because Bethany is not forced to give up her normally quiet and calm “safe zone” to a giant noisy crowd!

Tip #3: Let your loved one opt out of joining your holiday festivities altogether. Although not ideal, if your child can’t tolerate going out or having their own home invaded for the holidays, then Mom and Dad might consider taking turns celebrating elsewhere.

Tip #4: Prepare ahead for the big day with a personalized holiday social story. A couple of weeks before the big day write a social story using pictures or words (if your child is a reader) describing what will happen on the holiday. Go over the story with your child at least once a day. Be sure to include any changes in routine that may happen and who holiday visitors will be. We want to eliminate as many surprises for our kids as possible.

Tip #5: Plan ahead to eliminate potential meltdowns. If you’re spending the holidays at home, designate an area of the house as a “calm down” spot where your child one can retreat to in case the celebration proves to be overwhelming. Be sure to inform holiday visitors ahead of time what area of the house will be off limits and explain why so no one will be offended.

Tip #6: Declare some items off limits to visitors. Does your child have a favorite toy or other item that he might be anxious about if visiting kids get a hold of it? Make this item one that he or she will not be required to share and let visitors know ahead of time that this item will be off limits. Again, explain why so they understand and hopefully will not be offended.

Do you have any suggestions you could add to our tips?

Bethany, Malcolm and I want to wish you all a very happy holiday season!

*Please note, that I have edited this post to remove the term, “special needs” and tip #7 which referred to using a reward system to prevent meltdowns as these were both pointed out to me as being offensive to autistic individuals. I greatly value the opinions and criticisms of those with autism and would never knowingly offend anyone, most of all my own precious daughter who is an autistic brain tumor survivor.

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Thanks so much for stopping by!

*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at no extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

Enter your email address to follow this blog and receive notifications of new posts by email.

Posted in Bethany Moments, Childhood Brain Cancer Survivors, Day in the Life, Siblings of Special Needs Children, Special Needs Family Life, Special Needs Parenting

Day in the Life of an Autistic Adult

Last Sunday was a great day and not only for my  daughter,  Bethany, who is autistic and also a brain tumor survivor!

It was actually an awesome day for me and my husband too, because when Bethany is happy, everybody is happy!

(*This post contains affiliate links.)

As a matter of fact, making Bethany happy is what life is all about for us!

Bethany woke up on Sunday morning happy and in the mood to be social and that does not happen very often, trust me!

So, when she asked to go to the park in a nearby city we were thrilled and jumped at the chance to get her out into the fresh air!

Malcolm and I love to spend time outdoors!

Bethany, not so much!

Most of the time, she’s more of a indoorsy, couch potato kind of a girl!

Now, our son and his wife just so happen to live in the city where the park is located, so I quickly hatched a plan to make the day even more special for Bethany!

I secretly called my son and his wife to let them know we’d be in town, then we came up with a plan to surprise Bethany with a visit to their house after we took her to the park!

This particular brother and his wife are two of Bethany’s most favorite people in the whole world and she loves loves their dog, Oliver as well!!

So, we arrived at the park.

It’s not really a new park for us, but it had recently been completely demolished and rebuilt, so the playground equipment was brand spanking new to us!

This playground is so awesome now!

Bethany and Dad had a blast climbing around and trying out everything!

I feel like it was set up as a sort of obstacle course with all kinds of weird and funky ways to climb up and maneuver around!

It was great exercise for Bethany!

When she was all done at the park she asked to go to the store and that’s when we told her about the surprise visit to her brother’s house.

She was ecstatic!

We decided it would be cool to go to Dollar Tree and get Oliver the dog, some treats and a toy!

Bethany was quite particular about what she wanted to get for Oliver!

We also enjoyed looking around at the Christmas stuff.

I was shocked at how patiently she waited in line!

Usually she wants to wait out to the car with Daddy while I stand in line to pay!

With our items purchased, we headed over to Oliver’s house.

We all had fun showing him his new purple zebra striped bone and feeding him snacks!

Funny, but when it was time to go, Bethany wanted to take the bone and the remainder of the treats back home with her!

I guess she wants to hold onto them for safekeeping until the next time we visit him!!

So, once again, we all had a fantastic day out in the community and hanging out with family!

And that’s just one way of turning the crappy situation of living with a brain tumor and a seizures into a happy life!

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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at no extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

Enter your email address to follow this blog and receive notifications of new posts by email.

Posted in Autism, Bethany Moments, Childhood Brain Cancer Survivors, Disability Awareness, Special Needs Family Life, Special Needs Parenting

The Inconvenience of Disability and a Throw Away Culture

Public opinion considering that disability is an  inconvenience to others mixed with the growing trend towards becoming more and more of a throw away society is both disturbing and frightening to me!

Can’t cope with your child’s annoying and inconvenient disability?

Then just get rid of him or her.

Now please don’t get me wrong.

I’m well aware that many loving parents of children with disabilities make the very difficult decision to place their children into living situations outside the family home.

In fact, I personally know several children who are happy and thriving living as independently as possible away from home.

I’m reasonably certain though, that most parents who place their child to live outside of the home did not come to that decision lightly or because they felt that their child was too much of a burden.

Sometimes as our disabled children become young adults, they want to explore and experience growing up, leaving home, and living as independently as possible.

Other times, parents make such a decision for the safety of their child or for the safety of other family members.

I’m sure there also are a myriad of other good reasons why parents sometimes choose to place their disabled child in living situations other than at home with them.

And then, of course,  as parents of children with special needs age, we would be negligent if we did not at some point, begin preparing them for life without us and to do so involves eventually transitioning them into other housing options.

I have no issue with any of these options!

My criticism lies with the opinion that if your child’s disability causes you an inconvenience, is annoying, or makes life difficult for you in any way, then by all means just get rid of him or her!

Tragically, the horribly despicable opinion that some aspects of my daughter’s disability are too much of an inconvenience to me, has reared its ugly head in my life.

This alarming attitude of someone close to me has broken my heart!

I feel as if I can’t express any hint of distress, despair, or depression when I am with this person because every time I do, she responds by telling me to place Bethany into an institution for the disabled.

She tells me that I deserve a less stressful life!

Perhaps she means well and has good intentions, but all I hear her saying is, “Throw away your inconvenient daughter so you can have a better life!”.

It’s heart wrenching for me that this person wants me to throw away my daughter as if she were just a piece of dirty trash.

As close as we once were, I have decided that I need to cut her out of my life.

Because no matter how difficult or inconvenient Bethany’s disability be at times, I will not give up on her or send her away out of selfishness!

Bethany’s happiness, safety, and welfare will always come first and she will always be worthy of  being treated with love, kindness, dignity, and respect.

My husband and I have absolutely no intention of placing her into another living situation until the she is ready for it.

Actually, Bethany recently turned twenty!

Now that she is an adult, the time to transition her into different living arrangements will soon be upon us.

In fact, we are currently working on a 5-10 year plan to purchase a duplex where we will convert one apartment into a sort of mini group home for her and roommates where she can learn to live more independently without us and my husband and I will live safely nearby in the other unit.

I’m sharing at That Friday Linky.
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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at no extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

Enter your email address to follow this blog and receive notifications of new posts by email.

Posted in Autism, Bethany Moments, Childhood Brain Cancer Survivors, Disability Awareness, Homeschooling, Product Reviews, Special Needs Parenting, Therapies, Unschooling in Action

Wikki Stix for Occupational Therapy Fun!

Bethany has enjoyed playing and learning with Wikki Stix ever since her first occupational therapist suggested we get her a set 18 years ago!

(*This post contains affiliate links.)

For those of you that may not know what Wikki Stix  are, they creative, colorful, non-toxic pieces of yarn covered in a waxy, non-sticky coating.  

For us, Wikki Stix have stood the test of time as being one of Bethany’s favorite activities and as being a sturdy, durable and indestructible purchase well worth our modest investment!

Wikki Stix are perfect for working on Occupational therapy goals!

Bethany’s goals at this time are to:

  • Strengthen her left arm, hand, and fingers.
  • Encourage her to reach her arm and hand across mid-line. This is the imaginary line that starts at the top of your head and travels down the middle of your body, dividing it in half. Reaching your arm, hands, (and even feet) across this imaginary line means that both sides of your brain are working well together.  A person needs to be able to spontaneously cross the mid-line in order to use both hands (and feet) together effectively.

If you think Wikki Stix might be a good fit for your child, then I urge you to check out these durable, creative, no-mess, non-toxic, sets for tons of fun, creative learning activities sensory integration and tactile experiences!

  • Bethany is working with the Basic Shapes set in the video below. This tactile learning activity helps develop fine motor skills, plus it encourages good eye-hand coordination! Children will learn about shapes as they connect-the-dots using Wikki Stix. This set features ten, durable, laminated shape cards, 72 Wikki Stix, 2 work boards, and a large full color fold out instruction sheet.
  • The Alphabet Set contains 26 individual alphabet cards plus 36 Wikki Stix. Each letter card has directional arrows that will help guide your child in creating the proper handwriting “strokes” making for a perfectly fun pre-writing activity!
  • The Numbers and Counting Set will get your child working on developing  fine motor skills as well as learning about counting. Kids will have so much fun with this set that they won’t even realize they are learning!
  • The Wikki Stix Multi Sensory Resource Set  provides a perfect tactile and sensory experience for children. This set is great for  visually impaired individuals just like Bethany, who is blind on the right sides of both of her eyes. It also provides lots of creative kinesthetic learning, which makes it just the right choice when working with autistic individuals!  This set contains: 6 activity cards, 144 colored wikki stix, a resource manual, and a grid board, all included in a zip-up bonus bag. Not made for children under the age of 3 years old.
  • The Wikki Stix Traveler Play Set is perfect for taking along on your family vacation!  Your child will work on their therapy goals as well as their fine motor skills. They’ll also explore their feelings, make critters and creatures, make a Wikkidoodle, create funny faces, make 3-D creations, play travel games, spin and create in the Do-Wikki Game, decorate cans and bags, and design cards. This travel kit includes: 96 Wikki Stix Creatables Wooden shapes Feathers Pompoms 4 blank faces 2 greeting cards Do-Wikki Game Wikkidoodle sheets Travel Fun Book of ideas plus project sheet Colorful fish and a butterfly to decorate , and it all comes  in a convenient, sturdy carrying case!

For more information about crossing the mid-line and other occupational therapy concerns, ideas, and activities please visit OT Mom Learning Activities
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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at no extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

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Continue reading “Wikki Stix for Occupational Therapy Fun!”

Posted in Autism, Bethany Moments, Childhood Brain Cancer Survivors, Disability Awareness, Siblings of Special Needs Children, Special Needs Family Life, Special Needs Parenting

The Reluctant Night Owl: A Special Needs Poem

I Can’t sleep

I desperately want to be able to sleep

I am not a night owl

I can’t get comfy

If I lie on my right side, I get a kink like a charlie horse in my right  hip

If I lie on my left side, my left shoulder hurts

If I lie on my back, my knees hurt and I get muscle spasms in both thighs

If I lie on my tummy, my sinuses clog up and I can’t breathe

I begin to feel that all to familiar creeping feeling in my legs

Restless leg syndrome

I get out of bed to try and walk it off

There is no way that I can lie down comfortably

So I toss and I turn and I walk around

While I am tossing and turning and walking around my mind wanders

I think about how much longer it is taking to get our house ready to sell than I thought it would

I worry that the good and affordable new homes will all be sold by the time we are ready to sell

I think about how much money it will cost to heat this house for the another winter

I think about all the things I don’t do for my kids and grandson

I think about all the disasters and catastrophes that could happen

I can’t stop thinking

I think about how there are no workers available to help with Bethany

My thinking turns into worry

I worry about what will happen to Bethany after I die

I morbidly imagine that scenario in my mind’s eye

I imagine myself being dead and Bethany hitting and shaking my cold and lifeless body trying to wake me up

After my body is gone

I imagine her constantly asking everyone when I will be coming home

I stop my funereal  fretting for a minute and turn to look at Bethany sleeping beside me

Yes, I still sleep with my sixteen year old special needs daughter because I am afraid that she might have a seizure in her sleep and die

I notice that she is not snoring

I listen and check to see of she is still breathing

She is, thank God

I resume my morose and unproductive imaginings again

This time I imagine Bethany dying

That thought is more than I can bear

I start to cry

I can’t sleep

*I originally wrote this poem 4 years ago!

I’m very happy to say that having both of my hips replaced has taken away most of the pain in my legs, thighs and knees and I no longer sleep in the same bed as my now 20 year old daughter.

Everything else is still pretty much the same, except our house is now up for sale and all the good houses have been taken!

I still can’t sleep because I worry about Bethany’s future all night!

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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at no extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

Enter your email address to follow this blog and receive notifications of new posts by email.

Posted in Bethany Moments, Childhood Brain Cancer Survivors, Special Needs Parenting

What If…My Daughter Had Never Had a Brain Tumor?

Even though I love, adore, and accept my precious Bethany just the way she is, I often wonder what she would be like if she had never had a brain tumor.

The theory is that Bethany was actually born with her brain tumor, but it wasn’t until she was two years old that we began noticing its troubling symptoms.

And it wasn’t until after she suffered a stroke and brain damage during the surgery to remove it that her life was changed forever.

Then when she was five years old, she was also diagnosed with autism for good measure!

The theory behind her autism is that she was born with it and then everything else that happened to her worsened it!

But up until she got sick, she seemed like a perfectly typical two year old to us.

Although, looking back at old videos, we do think we see early signs of autism now.

But whatever her actual disability history is, it wasn’t until after suffering such horrendous brain damage that:

  • Bethany began having the debilitating seizures that constantly threatened to destroy her life for twelve years.
  • Her left side was significantly impaired.
  • She lost part of her vision.
  • She couldn’t sit up, stand, or walk.
  • She couldn’t talk.
  • She began displaying more obvious autistic like behaviors.
  • She began having occasional aggressive and violent meltdowns.
  • She permanently became a two year old emotionally and intellectually.

When Bethany was four years old,  I was desperately hoping to find someone to stay with her so I could attend my other daughter, Rebekah’s dance recital.

There was no way that she could have tolerated sitting in a dark, noisy, and crowded auditorium to attend.

I’m happy to say that my son, Micah, offered to stay with her that day, so I could attend the recital.

But while I was sitting in that darkened auditorium enjoying the dance recital and the adorable little kids the same age as Bethany skipped onto stage, it shockingly hit me like a ton of vicious bricks.

My heart sank and I began to sob because at that exact moment, I realized Bethany might never be able to join a dance class.

In fact, that was the first time I realized that there would probably be a lot of things in life that Bethany would never be able to do all because of that horrible brain tumor.

Sometimes, now, I wonder what Bethany would be like if she had never had a brain tumor.

  • What would her personality be like?
  • Would she still have that pesky stubborn streak?
  • Would she be perky and bubbly?
  • Would she be an active athlete?
  • Would she be super feminine girly girl?
  • Would she be a studious bookworm?
  • Would she have a boyfriend or a girfriend?
  • Would she be in college right now?
  • Would she have a job?

I know many parents who have children with disabilities say they would never change a thing about their child’s situation, but… If I had the power to change a few things about Bethany’s life I certainly would.

If I could, I would:

  • Erase every. single. seizure she has ever had.
  • Erase every. single. second of her aggressive behavior, because when she is raging, I believe she is also suffering.
  • Replace every. single. second of her struggles with triumphs.
  • Have prevented that nasty, evil pilocytic astrocytoma from ever growing in her teeny tiny, two year old brain.

However, on the other hand, I am thrilled to be able to say that 18 years after her brain tumor diagnosis, Bethany has astonished us all with her accomplishments and capabilities!

She has persevered through all her pain, suffering, and seizures to create quite a satisfying and happy little life for herself!

She also loves her social and fitness club where she meets her friends every week and one of their activities is dance class!!

She also loves to swim at the YMCA, go shopping, hunt for bugs, ride roller coasters, go to the beach, visit her siblings and so much more!

dance-3 If you are a special needs parent:

  • Would you change anything about your child’s situation?
  • Do you ever wonder what your child would be like if he or she didn’t have those special needs?

*A version of this post was first published on October 22, 2015.

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*This post may contain affiliate links. Thanks in advance if you should decide to purchase an item through one of our links at no extra cost to you. 100% of all commissions earned from sales go directly toward providing a better quality of life for our daughter, Bethany, a brave brain tumor survivor and special girl!

If you have a minute, please check out our Amazon Store where I have put together a list of my favorite books and resources and Bethany’s favorite games and products and our Etsy Shop where you can instantly download vintage book illustrations and prints of Bethany’s paintings!

We’d love for you to join our big, happy, family!! Please Subscribe to our blog and You Tube channels below and please consider sharing this post on your other social media accounts!! Thanks!!

Adventures of an Autistic Brain Tumor Survivor on Youtube

Crafty Old Lady on Youtube

Enter your email address to follow this blog and receive notifications of new posts by email.