Posted in Autism, Disability Awareness

Strategies That Make Waiting Easier for My Autistic Daughter!

When My daughter, Bethany, an autistic brain tumor survivor, was little she found it extremely difficult to wait for just about anything!

In fact, waiting often threw her into major meltdown mode!

Since there are many situations in life where we must wait, It was very important to me to help her learn to wait better, so I came up with a few strategies that helped avoid Bethany’s waiting meltdowns!

Now I won’t lie and tell you that the following strategies and products completely eliminated all of Bethany’s waiting issues, but  I will say that they have made waiting easier and more enjoyable for Bethany.

Strategies

1) Make a schedule of events: I prepare Bethany in advance when she will need to wait- such as while waiting her turn to see the doctor, while standing in line to see a movie, or while checking out at the store. She understands situations best when shown photos of what will be expected of her, so I try to use actual photos of her doing the activity then create a detailed schedule of events. I use Google images if I don’t have any pictures of her actually doing the activity herself.

For example: I have a “going to the doctor” schedule which has pictures of her sitting in the waiting room,  sitting on the examining table with her doctor, and a picture of what ever activities we’ll be doing after the doctor visit so she knows she’ll also get to do something fun when the hard part is over.

2) Put together a “waiting kit” that is only used while waiting. This could be a special little back pack, a little container, or even a Ziploc baggie filled with little dollar store toys, fidgets, books a juice box, snacks, or whatever else you think will hold your child’s interest for a while.

3) Bring a tablet or iPad along. A word of caution about this suggestion, though:  Using an iPad during waiting periods can be hazardous if your child must finish what they start before moving on. At one point, Bethany had created such a lengthy routine of iPad games that she her OCD made her have finish before she could go when her name was called at the doctor’s office!

If you suspect that this might be a problem for you, it might be advantageous to practice interrupting your child during activities at home in a safe environment so that he or she can grow accustomed to being interrupted and learn how to deal with it. For example: Make a game out of interrupting your child during an activity with a favorite snack or promise of a game!

3) Explain ahead of time the rules: Again, I use pictures, but you do whatever is best for your child. You can have a conversation or write a list or social story explaining the rules and kind of behavior that will be expected of your child during the waiting period.

4) Bring along some music. Listening to music can be very helpful for lots of people to keep calm during waiting times. Having a device filled with lots of songs can be a very helpful tool to use while waiting, but don’t forget to bring the ear buds!!

5) Reinforce successful waiting. When the waiting has been successfully achieved always reinforce with high fives, words of praise and encouragement, and rewards for a job well done so that waiting begins to be associated with fun!

I hope these suggestions will make your next waiting time a happier one!
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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 Autism, Disability Awareness, Homeschooling, Product Reviews, Special Needs Parenting

Activities for Visual Learners and Kinesthetic Learners.

Many individuals with autism and other special needs are visual and kinesthetic learners.

In other words, they learn best by seeing, touching, and doing!

Temple Grandin PhD who is perhaps the most famous person in the world with autism says that she, herself thinks in pictures.

*(This post contains affiliate links.)

She describes her mind as actually working like Google Images! (My Mind Works Like Google Images)(Autism: The Way I See It).

She believes that if students with autism are to be successful learners, their teachers must discover what their dominant learning styles are, then teach them accordingly.

I have had the awesome privilege if hearing Dr. Grandin lecture in person and I respect her opinions and suggestions immensely!

I believe she speaks with authority, therefore, when she speaks, I pay close attention!

 

My daughter Bethany, has been diagnosed with autism as well as a few other disabilities.

Through trial and error, I have discovered that her dominant learning styles are visual and hands-on (kinesthetic).

Her language processing speed is quite slow so it’s almost impossible for her to learn by listening only.

Consequently, I’m always on the lookout for fun toys, games, and activities that are designed with visual and kinesthetic learning styles in mind.

I’ve compiled a list of visual and hands-on educational products below.

Some of them I have personally used in Bethany’s homeschooling program.

They have passed the “Bethany likes them” test and have also been effective in teaching her new skills.

The others are either very similar to items that we have or items that I think would be a good fit for her.

Flash Cards

  • Flash Cards, especially photo flash cards are one of the handiest and most effective tools for teaching a variety of concepts. You can find Flash Cards that will enforce matching skills, teach about feelings, emotions and categories. You can even find vocabulary flash cards. The teaching possibilities with flash cards are endless!

Puzzles

  • Manipulating puzzles is one of Bethany’s favorite ways to learn new concepts! Working with puzzles incorporates both visual and kinesthetic learning styles!
  • She loves learning how to spell words with her set of three letter word puzzles. She also enjoys using two piece puzzles to work on concepts like go togethers or opposites. These self correcting number puzzles were instrumental in teaching Bethany one to one correspondence.
  • For a bit more of a challenge and to develop language and critical thinking skills I suggest this three piece sequencing puzzle.

Math

  • Math manipulatives are fun for younger kids or even older individuals who still need practice with basic early learning math skills such as identifying colors, shapes, sequencing, patterns,  sorting, and more!  They are great for getting  your precious one’s gross and fine motor skills involved in the learning process!
  • You are sure to find a Domino game for teaching just about any early learning math concept such as counting, addition, fractions, and even time
  • Rolling and throwing Dice is a fun for kids and as an added bonus it gets their muscles involved in the learning process! Any kind of dice game is Bethany’s favorite at the moment. She loves the excitement and anticipation of wondering whether she’ll get a good roll or a bad one!
  • You can use Dice to teach basic math operations, the metric system, place value, and money skills.
  • Tenzies is a fast and frenzied calculation dice game that would be perfect for fun family game night as well as actually sharpening your eye hand coordination!

Language Arts

  • Dice games aren’t just for teaching math skills either! Dabble is a fast paced word game that is sure to wake up the language areas of the brain which are located in the temporal & frontal lobes.
  • Crosswords is like doing a crossword puzzle with dice!
  • And speaking of Word games, Bethany loves getting her whole upper body involved in language processing development while playing Zingo games. You can choose from either Zingo Sight Words and Zingo Word Builder
  • Word Whiz is an electronic word building flash card game!

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You may also find Six Tips for Modifying Lessons for visual learners helpful!
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Whether you are finding in yourself in need of adding a little excitement and pizzazz to your homeschooling program or you just want to reinforce skills your child is currently learning at school, you’re sure to find just the right item by clicking on any of my affiliate links!



Please enjoy this video of Ethan a young man with autism. All his teachers said he was not capable of learning. Watch the miracle of learning unfold as his parents begin homeschooling him and teaching him visually!

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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, an autistic and  brave brain tumor survivor !

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

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

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 Autism, Disability Awareness, Homeschooling, Product Reviews, Special Needs Parenting

Occupational Therapy Products!

My daughter, Bethany was diagnosed with a life threatening brain tumor when she was just two years old!

After she had the surgery to remove it some complications caused her to have a stroke.

The stroke caused right sided hemiplegia, which basically means she lost the use her right arm, hand, leg and foot!

In addition to all that, when Bethany was five, she was also diagnosed with autism and sensory processing disorder.

Intensive physical therapy was effective in helping her regain the ability to stand and walk again.

However, even though Bethany “graduated” from official occupational therapy, physical therapy, and sensory integration therapy years ago, if we aren’t constantly stimulating her right arm and hand, she seems to forget that she can actually use them!

She also experiences an ongoing struggle with regulating her delicate tactile, vestibular, and proprioceptive sensory systems.

As a result, I’m constantly on the lookout for the latest, state of the art, therapy products to include in our home therapy program.

I’m always on the prowl for something new that just might entice Bethany to use her right arm and hand more often and items to help regulate the three sensory systems she has trouble with.

You can really see Bethany’s hemiplegia in action in the video below!

(*This post contains affiliate links.)

Over the years, I’ve come across many products that I feel have helped Bethany recover from her stroke and accommodate for her sensory issues.

I thought I’d share them with you all here on the chance that you or your loved one with similar challenges might benefit from them as well!

  • If you’re looking for items to help your child remain calm and able to focus, you might want to take a look at these noise cancelling head phones. They’re perfect for kids who become overwhelmed or are easily distracted in noisy environments.
  • One of the items that I asked The Dream Factory to provide for my daughter Bethany’s “chill out” sensory room is this awesome Peapod! She loves tightness against her body and this is perfect for providing that type of sensory input!
  • For helping Bethany with sensory regulation, we also asked for a special needs swing. It’s great for calming agitated kids and promotes proper sensory integration.
  • A bubble tube light was next on our list of items wanted for Beth’s sensory room. Bubble lights provide a calming visual stimulation that helps kids chill out and relax!
  • Looking for some fun and informal sensory toy ideas? Then check out this package of kinetic sand! You can even get tools like this sand molding tool set to enhance the sensory experience! Manipulating this sand between the fingers is a perfect activity for both sensory seekers and sensory avoiders! Playing with sand is also great for working fine motor skills and for encouraging body awareness, and tactile exploration!
  • Theraputty is a great tool for strengthing fine motor muscles! I used to hide little toys inside for Bethany to find!
  • This weighted puppy is sure to become a bedtime favorite for your little one! This furry friend will provide your child with all the sensory input, heavy work, and tactile stimulation he or she needs!
  • Perhaps your little wiggle worm might benefit from using a chair ball! Kids can sit and bounce on it but it won’t roll away! It’s perfect for kids that just cannot sit still in a a classroom situation!
  • Another unique seating option for the child who just can’t stop moving might be the Stabili-T-stool. Kids will work on balance, trunk control, core stability, motor planning and coordination while rocking on this unique stool!
  • Are chewing needs distracting your kids from learning at school? chewable pencil toppers might be just the ticket! These pencil toppers will provide oral stimulation in a somewhat discrete manner!
  • Using a slant board for writing assignments will help prevent wrist fatigue and encourage better posture while working on handwriting!
  • Is your child reluctant to wear certain clothes? Maybe compression clothing would help! If you watch our Youtube channel, then you know that Bethany wears wet suits for sensory regulation!
  • I appreciate all the special products to help kids with handwriting!
  • These cool Interactive reading bools were designed with special needs in mind! They come in seven ability levels and give kids practice in reading and motor planning. They also help develop speech and language skills.

While this list is by no means exhaustive, I do think it’s enough to get you all started on researching products that might be helpful for your family!

Do you have anything that has been helpful that you’d like to share with us? Tell us in the comments!
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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 Disability Awareness, Special Needs Family Life, Special Needs Parenting

7 Things to do When Planning Your Special Needs Child’s Future!

I know how it can be painful for parents to think about their special needs child’s future.

It’s heartbreaking to envision the time when we will no longer be there to love, care for, and protect our very vulnerable children.

But with a little careful planning and making a few informed, well thought out decisions you can achieve a measure of peace knowing that you have planned and provided for your child as much as is humanly possible!

Below are 7 things to think about when planning your special needs child’s future.

1. Set up a will: You must consult with an attorney who specializes in disability planning for this endeavor. Be sure to appoint a guardian and standby guardian for your child in your will. You don’t want the courts appointing one for your child in the event that something should happen to you and your child’s other parent. Your will must be set up with special instructions for any moneys your child may inherit or life insurance policy payouts he or she may receive to be deposited into a Special Needs Trust Fund.

2. Set up a Special Needs Trust Fund: You’ll need to hire an attorney to set this up for you as well. Leaving money or assets to your special needs child can be tricky. It is of the utmost importance that this be set up correctly!! You don’t want to jeopardize your child’s government disability entitlements such as SSI or Medicaid by leaving them money or property improperly.

3. Petition the courts for guardianship of your child: Until any child is 18, his parents are considered by the courts to be his legal guardians. Once he turns 18 however, that is no longer the case even if your child has a well documented disability!  The whole process of petitioning the courts for guardianship absolutely must be completed BEFORE your child turns 18, because the second he turns 18 it will be assumed that he is a responsible adult, capable of making his own decisions. It is highly possible that if you find yourself in an emergency situation after your child turns 18 and you are not his legal guardian,  a temporary guardian could be appointed by the courts to make decisions for him. (My husband and I just completed the guardianship process! Please click on the links below to learn more about our experiences!)

4. Apply for special needs government financial entitlements: There are many government financial resources available to qualifying individuals with disabilities. In the US we have Supplemental Security Income (SSI).  SSI provides a monthly income to children and adults with disabilities who cannot work. You can apply for SSI at any time in your child’s life, but until they are 18 their parents income will count in determining their eligibility. Once your child turns 18 however, parents’ income no longer counts and most individuals are determined to be eligible. Most states also have Medicaid Waivers available. Children or adults with significant disabilities and medical costs are usually eligible for this government medical insurance program. Parents’ income doesn’t count in determining eligibility. Some states even have a Home of Your Own Program that helps individuals with disabilities buy and maintain their own homes. Your child may also be eligible for food stamps and funds for heating their home.

5. Apply for special needs services: Your child may be eligible for other services that are available in most communities, such as the Home and Community Based Waiver or Self Directed Services. These services provide case managers or service coordinators to assist in ensuring that your child is receiving all the help that is available to him such as: respite workers, home health aides, home health nurses, community habilitation workers, job coaches, community transportation, gym memberships, hippotherapy, music therapy, art therapy. etc.

6. Decide where your child with live after you are gone: Where would you like your child to live after you are gone? There a a few options to choose from, including but not limited to: living with a sibling, in a group home, in a supported apartment, in a shared apartment with other disabled individuals, or in their own home with live-in staff.

7. Write a letter of intent and include your child as much as possible: This is a letter for your child’s future guardians intended to let them know how your child would like his life life to be after you’re gone. It should include where your child would like to live, community activities your child would like to continue participating in, your child’s place of worship, your child’s friends, favorite foods, favorite activities, and all medical information.

For more information and resources please visit:
Special Needs Future Planning 101
Weirdest 17A Special Needs Guardianship Citation Ever Served!
Special Needs Guardianship Doctor’s Appointment
Filing Our Special Needs Guardianship Application
17A Special Guardianship Approved
Social Security Administration
Home and Community Based Waivers
Medicaid Waiver
Self Directed Services

Please note that this post first appeared on Firefly Community Special Needs Blog
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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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Posted in Disability Awareness, Homeschooling, Special Needs Family Life, Special Needs Parenting

Technology for Special Needs

Way back in 1996 we had finally saved up enough money to buy our very first personal home computer!

We were so excited and amazed by what a computer could do!

The use of floppy discs, diskettes, cd-roms, chat rooms, email, paint and drawing programs, educational games like the JumpStart series, and surfing the Internet quickly became a part of our regular, everyday routine!

Now,  more than 20 years later, computers are now so much a part of lives and important to everyday living that I wonder just how we ever survived without them.

I am especially grateful for how much computers, iPads, and phones have improved my special needs daughter, Bethany’s quality of life!

The following is a list of basic computer and internet skills that I feel are important for Bethany to learn.

Some she has mastered and some she is still working on

• Turning on the computer

• Using the keyboard

• Navigating the desktop

• Learning to spell favorite websites’ names

• Learning to spell the names of the people they want to communicate with

• Using email, Facebook, Skype, and/or other favorite social media choices

• Using Google

• Using YouTube

In my opinion, the possibilities for computers to assist people with special needs is nothing short of miraculous!

People with disabilities can use computers to communicate, find information, earn degrees, and entertain themselves, though they may need special equipment to do so.

Advancements in technology have exploded in recent years making all kinds of technological devices, hardware, and software available to assist the disabled!

The following is a list of special needs technology available for people with special needs.

• Voice activated typing programs

• Speech recognition software

• Special computer access methods for people who cannot use a keyboard

• Dynavox

• Communication apps for iPad

One of my favorite resources for Special Needs Technology: http://www.mayer-johnson.com/

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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 Childhood Brain Cancer Survivors, Disability Awareness, Faith, Special Needs Family Life, Special Needs Parenting

Super Spiritualizing Someone Else’s Suffering.

It annoys me to no end when people exploit the pain and suffering of others to extol the super spiritual lessons they’ve learned from an illness or other misfortune that is not their own.

What irks me even more, is when parents use the pain and suffering of their own precious children to show off to the world just how super spiritually superior they are to their peers who have not had a child with a life threatening illness or disability.

Nothing quite says, “I Love You and Care About You” like declaring that your loved one’s cancer or whatever other horrible circumstance they may be dealing with, is a gift and a blessing!

Please, people…think about that for just one minute!!

That’s like telling your ill loved one that because their illness has taught you so many wonderful things and has brought you so many wonderful blessings, that you are glad they have gone through all this pain and suffering and that you are benefiting from their tragedy.

While I will be the first one to admit that I did receive blessings and I did learn many spiritual lessons through my daughter’s brain cancer and disabilities, I wish that I had not learned those lessons or been the recipient of those blessings at my daughter’s expense.

I would have gladly not received all those blessings or learned all those lessons to spare my daughter so much pain and torment.

I would rather have learned those lessons any other way than through my daughter’s pain and suffering.

I would rather have been the one to go through all that pain and suffering myself, in order to learn those lessons and receive those blessings.

If you feel that YOUR own cancer (or whatever misfortune you may be going through) is a gift or has been a blessing to you, that’s a-okay, fine and dandy!!

I totally understand.

But, please do not claim someone else’s pain, suffering or misfortune to be your gift or your blessing.

Super spiritualizing someone else’s suffering, pain, or misfortune by claiming it to be YOUR gift or blessing is demeaning, cruel and insensitive to the one actually enduring very real physical and emotional pain and suffering.

Please, when speaking about someone else’s unfortunate experience or illness, stop and think before you speak.

Give thought to how the person may perceive or interpret what you are about to say.

Before you speak, choose your words wisely and carefully, with concern for how the other person may feel about what you say.
purple-divider-Copy-Copy Proverbs 12:18 ESV- There is one whose rash words are like sword thrusts, but the tongue of the wise brings healing.

James 1:26 ESV- If anyone thinks he is religious and does not bridle his tongue but deceives his heart, this person’s religion is worthless.

Proverbs 21:23 ESV- Whoever keeps his mouth and his tongue keeps himself out of trouble.

Proverbs 10:19 ESV- When words are many, transgression is not lacking, but whoever restrains his lips is prudent.

*A version of this post was first published on October, 20, 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.

Posted in Disability Awareness, Special Needs Family Life, Special Needs Parenting

Challenges of the Disabled: Problems they Face

Even with the passage of many disability rights laws in recent years, the problems and challenges of the disabled are staggering!

Bullying, accessibility, inclusion, lack of appropriate services, poverty, and safety are just a few of the issues that affect the quality of life for many people with both physical and developmental disabilities.

Below are just four of the challenges of the disabled (in a nutshell) and the issues that many cope with on a daily basis

1. Social Issues-

  • Far too many people with disabilities are ignored, overlooked, and forgotten at best. At worst they are mocked, ridiculed, bullied, mistreated, and abused.  Tragically, many disabled individuals live in fear. They live lonely, isolated lives, cut off from the mainstream of society.
  • Parents and schools need to teach acceptance as well as kindness, understanding, and inclusion! Supervised Inclusive sports and other school and community activities are a great place to start teaching positive interactions between the disabled and their typically developing peers!

2. Financial Issues-

  • In the US a person with is a disability is twice as likely as their non-disabled peers to live in poverty.  Government disability entitlements such as Supplemental Security Income (SSI) are the only source of income for many people with special needs. In my opinion, this system is inadequate and designed to keep the disabled poor and destitute.
  • Less than 1 in 5 people with disabilities are employed.  This may be because work places are not accessible, employers can’t or won’t provide accommodations, and employers still harbor negative attitudes toward the disabled.
  • Individuals receiving SSI are limited as to how much money they can earn or save. If they earn or save too much, they risk losing their much needed government entitlements!
  • Sadly, developmentally disabled individuals that are able to work are legally paid less than minimum wage to do so.

3. Safety Issues-

  • Disabled children are three times more likely to be sexually abused than their typical peers!
  • Disabled abuse victims are also less likely to get the help they need after an assault, because they can’t  tell what has happened to them.
  • As many as 83% of developmentally disabled adult women and 32% of developmentally disabled adult  men are likely to be sexually assaulted at some point in their lives.
  • Only 3% of those assault cases are likely to be reported.
  • Most assaults crimes against both children and adults are often inflicted by a care giver, acquaintance, or service provider, making it likely that the assaults will continue.
  • The disabled are also twice as likely as others to be victims of other violent crimes as well.

4. Accessibility to services- 

  • Availability of services to improve the quality of life for the disabled can be abundant or nearly non-existent, depending on the area. Funding, public support, public attitudes, attitudes of politicians and lawmakers, and location can make all the difference.  Rural areas may have great programs and policies in place, but tend to lack the man power to actually implement them.

Check out my posts, Top 5 States With the Best for the Disabled, The 5 Worst States for Disability Services, and Updated 5 Best and Worst States for the Disabled to see how your state rates in services for the disabled.

For more information please visit The National Disability Rights Network, Disability Rights Advocates, and civilrights.org

Check out the following affiliate links to books on disability rights and other issues the disabled face:

*A version of this post was originally published in September 2016.
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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!!

My 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.