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My Kind of Normal

Have you ever compared what your life is like on a daily basis with your child to someone else’s life and wished your life was just a little bit more like theirs?  I used to do this all the time and truth be told I still do this occasionally when my life with my child with special needs is chaotic.  With social media always showing us all the happy, smart people out their leading exciting lives it is hard to not compare even though we know that is not reality.  It is just a snapshot of a bigger picture.

Dreams of a Norman Rockwell Holiday

The worst time for me to do this is during the holiday.  I love the holiday season for many reasons.  I love the feeling of happiness, giving, generosity, love and acceptance during this season.  In the past, I used to not like it for many reasons as well.  I would watch all the children excitedly tell their parents what they wanted from Santa, join in with all the holiday games and parties, look forward to decorating cookies and see their faces light up when they unwrap their gifts and so on and so forth.  I so wished and prayed I would have these very same experiences with my child.  But my reality with my child is very different. 

Adjusting, accepting & embracing a new kind of Normal

My life looks a little different during the holiday season just like a lot of our mommies of special needs children.  My son could care less about presents.  As a matter of fact, he screams and lashes out when I give him a present to open.  I think he thinks it is therapy (occupational therapy to be exact).  I take him to St. Augustine every year to soak up the holiday spirit with all the holiday lights and people singing.  I try to get his photo under the big Christmas tree.  I want to have those fun photos to show people my son during the holiday season.  This year he screamed from the time we were parking the car to the time we left 30 minutes later. I decided to settle on driving through the neighborhoods with light displays to try to “catch” the holiday spirit.  After several failed attempts to help him experience the holiday spirit, I had a light bulb moment.  This is not what brings him holiday joy and spirit.  The extra noises, lights and excess people during these events is a sensory overload for him. He likes places and things that he is used to within his routine. This is how I am used to celebrating the holiday and I wanted to pass this on to him.  Traditions are very important to me and I wanted to have these traditions with Brandon.   It is time for a change.

Starting a New Tradition

I realized it is time for me to start new traditions and have a “New Kind of Normal”.   I started writing down all the things Brandon likes to do during the holiday.  He loves to eat, he loves to jump, he loves to ride in the car, he likes hanging out at the gym because he is used to going there, he loves music and he loves his Chewelry.  So, this year instead of giving him toys he will never play with I got a big basket and filled it with his favorite snacks and a year supply of chewelry’s. I filled his stocking with sensory toys and fidgets. 

On Christmas morning, I waited for him to find his fun stash on his own time.  No prearranged time to open gifts, no coercing him to sit on the floor and get his presents out from under the tree, no flash of the camera going off.  I had to learn to give him space to experience the holidays on his terms, not mine and when he was comfortable. When he finally saw his fun stash his eyes lit up, he looked at me and started jumping up and down and grabbed one of his snacks and excitedly gave it to me to help him open it.    I smiled and enjoyed that moment and was thankful for the many lessons my son teaches me on a daily basis.   Our holidays are not perfect, but we are working on better traditions that suit our family.

Ideas for New Traditions

It is difficult to start new traditions. This is an amazing book with lots of great ideas for traditions for your family. You could use this book with your family to choose new traditions that fit your unique family.

2019 Most Exciting, Cool Swings and Hideouts for your Child and Why Every Child Needs One

Have you ever stopped and watched your child in action and wondered “where does he/she get all that energy or “I wish I had their energy”.  If you have then you know exactly how difficult it is to keep your child entertained and happy.  I know because I have a son that is very busy.  One great solution for keeping your child active and happy and giving them endless fun at the same time is buying them a swing.  Swings are great to increase vestibular strength.  If you are wondering what the heck is vestibular, I will make it short and sweet.  Your vestibular system gives your brain information about balance, motion, and spatial awareness.  This information helps your body coordinate that movement and maintain balance.

Take a look at these exciting, fun, sturdy swings for your child!

This Rectangle Platform Swing is such fun. It holds up to 250 pounds. Very well made and easy to assemble. This price won’t last long. But it is an amazing durable swing that will provide so much fun for your child.

This is a great swing. It is a Full Support Swing for children that might be bigger that need a little of extra support while swinging. You have the ability to have it sit up or have the swing tilted back for more support. This is the teenage swing which goes up to 180 pounds. If you require a smaller swing this is the link to the next one down.

Play Platoon Flying Saucer Tree Swing is a very sturdy swing. Don’t let the name fool you, it can be hung outside or indoors Holds up to 300 pounds and the company gives you a lifetime warranty. This swing comes fully assembled, so you can’t beat that.  This is still is one of the favorites for my son. You can sit on this with friends, lay down and stand up if you like.

Hugglepod is a great versatile swing. They are very sturdy. It can double as a hideaway for your child. Easily fits up to 3 children inside. Great reading nook. It can be placed on a rotational spin hook so the children can spin while in the swing. Holds up to 250 pounds.

Trekassy 660lb Giant 60″ Platform Tree Swing for Kids and Adults Waterproof with Durable Steel Frame and 2 Hanging Straps. We have this swing hanging in my son’s sensory room. This is a great swing for several reasons: 1) It holds 600 pounds 2. It is big enough for multiple friends, so great for social skills 3. Can be hung up outside or indoors (we have it hung up indoors) 4) versatile, can sit, lay down or stand while swinging  This is a great choice also for children that cannot sit up for it is large enough to lay down in. You can use bean bags or pillows in the swing so the child is propped up more.

 

Hope this helps with some fun choices for your child that will bring a smile to their faces long into the future.

HCBS waiver what is it and how can it help my family?

Can someone just tell me where to start…..

Like most of you parents of children with special needs, I was constantly researching ways to help my son Brandon get the services he needs.  Also, like most of you parents I ran into many stumbling blocks in getting those services due to income restrictions, asset restrictions, lack of information, lack of funding availability, not knowing the right person or even not knowing how and what to ask for on top of all the lengthy, complicated paperwork that had to be filled out in its entirety without mistake or said mistake would cost you months or even years of non-service.  Totally frustrating system. Let me help you!

What does HCBS mean?

Home and Community Based Services.  This is person centered care delivered in the home and community.  It is designed to allow for individuals to stay in their homes instead of receiving services in a facility for care.  This program is housed under Agency for Persons with Disabilities.  It is considered the payer of last resort.  Meaning all other means to pay for service has been exhausted.

What can it cover for my child (under 21)?

  • Respite Care so you can take a break
  • Personal Care Supports
  • Environmental Modifications such as making a bathroom handicapped accessible
  • DME (Durable Medical Equipment)
  • Consumable medical supplies such as vitamins
  • Medicaid for as long as child is on waiver and more

Eligibility Criteria

Must be diagnosed with one of the following: Intellectual Disability (Full Scale IQ of 70 or below) Severe forms of Autism, Spina Bifida cystica or myelomeningocele, Cerebral Palsy, Prader-Willi syndrome, Down syndrome, Phelan-McDermid syndrome

Must live in Florida, must be at least 3 years of age or more and have a disability that started before the age of 18.  This is not based on income of the parents/guardian, but it is based on the income of the child. (There are ways to safeguard this income criteria for your child that we will talk about in another blog post)

Now you have qualification, and you get excited, but hold on they now tell you there is a 7 to 10-year waitlist. What to do next.

What is the Waitlist?

The Waitlist is exactly what is says. I list of individuals waiting for services.  Due to budget issues not all people that qualify for the waiver will get services right away.  This depends on if you have an emergent need.  Even though they tell you it will take 10 years to get off the waitlist, apply and get on the waitlist.  Periodically they will give temporary services to people on the waitlist.  Also once you are on the waitlist your can apply for a crisis defined as  homeless, exhibit life-threatening behaviors that place them or others in extreme danger, or have a caregiver who is in extreme duress and can no longer provide for the applicant’s health and safety.  Examples of this can be a caregiver that is having difficulty transferring a child due to back problems, a child that runs out of house or away from the parents putting himself in danger, a child that is aggressive to others causing injury or a self-injurious child.  My son got services due to PICA (he eats un-edible items.)

How to apply

Click on the link below and get your application

http://apd.myflorida.com/forms/Attachment-D-Application%20for%20Services%2017-09-06.pdf

After completing the application, include proof of eligibility (i.e. medical records showing diagnoses, psychological evaluations etc.).  Also, must send proof of domicile such as driver’s license, voters’ registration, homestead exemption etc.

Call 1-844-865-1172 Easter Seals for directions to send documents.

Don’t feel overwhelmed, take it one application at a time.  You are a superstar!

Resources for Special Needs Children in Jacksonville

     

Birth to 3 

You may have already started scrolling the internet for available resources for your child that has been newly diagnosed or needs some additional assistance.  It can be very confusing and overwhelming.  Lets start at the beginning:

Northeastern Florida Early Steps

If you suspect your child has a delay or is newly diagnosed, you can seek help through the State of Florida’s Early Steps system.  This program is at no cost to the family and is not income qualified.  It is for children birth to 3 years of age. You can self-refer or get your child’s pediatrician to refer you for an evaluation.  If your child was a preemie and weighs under 1200 grams at birth they automatically qualify as an established condition.

No Cost to you Developmental Evaluations

They will do a developmental evaluation to determine if your little one needs services.  Here is a link to qualifications. Early Steps Qualifications   Services can be speech therapy, physical therapy, occupational therapy, infant/toddler development specialist and more.  Therapy is done in the natural environment, so in the home and/or daycare or community. They have playgroups so that you can meet other families and your children can have opportunities to play in an inclusive environment.  To reach them to schedule an evaluation you can call 904-360-7022.

Private Insurance

If you have insurance and want to set up private therapy apart from Early Steps there is other really great resources in town.  Call you insurance company and ask for in-network providers for the therapy that you are searching for.  If your child has Medicaid then there will not be any copays for therapy sessions with Medicaid. 

Stay tuned to our blog for more valuable resources and services for your family.

Carrie

"I took my son here for his first birthday today and he had so much fun!!! This place is a hidden gem! It’s absolutely amazing ☺️ the owner is amazing and so friendly. I felt so welcomed and my son had a blast! Highly recommend this place!!!"

-Carrie (Parent)
Sensorytowne
2019-04-25T18:44:56+00:00
-Carrie (Parent)
"I took my son here for his first birthday today and he had so much fun!!! This place is a hidden gem! It’s absolutely amazing ☺️ the owner is amazing and so friendly. I felt so welcomed and my son had a blast! Highly recommend this place!!!"

Dalia

"My kid loves this place. Extremely clean and friendly staff. I highly recommend this place. Always have something new added."

-Dalia (Parent)
Sensorytowne
2019-04-29T20:58:29+00:00
-Dalia (Parent)
"My kid loves this place. Extremely clean and friendly staff. I highly recommend this place. Always have something new added."

Angelina

"Today we went on a field trip with our daycare to Sensory Towne and our students loved it! The staff were friendly, inviting, and very interactive with our students. The environment was very clean and engaging for not only the students but the parents as well. We will definitely be booking more field trips in the future."

-Angelina (Teacher)
Sensorytowne
2019-04-29T20:58:42+00:00
-Angelina (Teacher)
"Today we went on a field trip with our daycare to Sensory Towne and our students loved it! The staff were friendly, inviting, and very interactive with our students. The environment was very clean and engaging for not only the students but the parents as well. We will definitely be booking more field trips in the future."

Courtney

"Love it here. As a therapist I can bring kiddos in to play and accomplish goals we are working on. The staff is super friendly and helpful. This is a total judge free space and there is a lot of activities for the kids."

-Courtney (Therapist)
Sensorytowne
2019-04-29T20:58:46+00:00
-Courtney (Therapist)
"Love it here. As a therapist I can bring kiddos in to play and accomplish goals we are working on. The staff is super friendly and helpful. This is a total judge free space and there is a lot of activities for the kids."

Samara

"My toddler alwaysss has a fun time here! One of our favorites. And the owner is the sweetest.  Highly recommended!"

-Samara (Parent)
Sensorytowne
2019-04-29T20:58:49+00:00
-Samara (Parent)
"My toddler alwaysss has a fun time here! One of our favorites. And the owner is the sweetest.  Highly recommended!"

Clara Testimonial

"Amazing place! The owner is great, she is very enthusiastic and loves kids. There are classes, special events, and free play as well. It's perfect for a rainy day or when it's too hot outside for the park. There is always something to do at Sensory Towne!"

-Clara K. (Parent)
Sensorytowne
2019-06-29T01:51:39+00:00
-Clara K. (Parent)
"Amazing place! The owner is great, she is very enthusiastic and loves kids. There are classes, special events, and free play as well. It's perfect for a rainy day or when it's too hot outside for the park. There is always something to do at Sensory Towne!"

Danielle

"My son who just turned 3 LOVES this place!! We like to attend the Wednesday morning art classes!!There is so much to do, super clean and the owner is so sweet! We will definitely keep coming back!! ☺️"

-Danielle (Parent)
Sensorytowne
2019-05-07T00:59:00+00:00
-Danielle (Parent)
"My son who just turned 3 LOVES this place!! We like to attend the Wednesday morning art classes!!There is so much to do, super clean and the owner is so sweet! We will definitely keep coming back!! ☺️"

Lisa K

This birthday party was the most fun! The staff was fantastic.  I cannot give them enough credit for how amazing they were.  The made sure we were taken care of.  They handled prepping, clean up, make sure all guests plates and cups were full.  We did not lift a finger.  Miss Kimberly was engaging and sweet and has done a wonderful job with Sensory Towne. Best birthday ever!

Lisa K (Parent)

Sensorytowne
2019-10-14T18:50:49+00:00

Lisa K (Parent)

This birthday party was the most fun! The staff was fantastic.  I cannot give them enough credit for how amazing they were.  The made sure we were taken care of.  They handled prepping, clean up, make sure all guests plates and cups were full.  We did not lift a finger.  Miss Kimberly was engaging and sweet and has done a wonderful job with Sensory Towne. Best birthday ever!
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