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Summer Concerns

As we move into warmer weather the ticks seem to be especially prevalent. Having special needs individuals in your house is difficult enough without adding Lyme disease to your list of things to deal with. Not only should you remember to check everyone when they come in from being outside, but also when kiddos come home from school.  Remember that Lyme disease comes from deer ticks that are extremely small. A sharp eye is needed to detect them.

Last year my daughter came home from school and obviously had picked up a tick from the playground wooded trail area. Luckily that was as far as it went for her. From then on we sent a hat with her and the teachers were much more aware when taking the students into their trail area.

Make sure to look out for yourself as well, caregivers need energy to provide good care. Nothing can zap it quite as quickly as Lyme disease.

Myths and Truths about IEP's

On its face an Individualized Educational Plan (IEP) is a plan developed to ensure that a child who has an identified disability is attending an elementary or secondary educational institution and receives specialized instruction and services.

Myths and Truths

All staff providing services read the IEP.

Staff providing services do not have to read the IEP. Seems like such a no-brainer. You write an educational plan for your child and the school staff is supposed to follow it, but they never read the plan!?!

IEP’s are completed once per year.

IEP’s HAVE to be completed at least once per year. You can request an IEP at any point during a school year should you feel a change is needed. The school has to hold the meeting—even if they do not agree that there is a need.

You must accept and sign the IEP.

If you do not agree with the plan DO NOT sign indicating your acceptance. If you leave it unsigned then that indicated your acceptance. Continue to work with the school to iron out issues until you have a plan that you are satisfied with.

School staff know what will work best with your child in the school setting.

School staff have worked with your child and may have great ideas for how to work with your child, but so do you. Do not discount yourself in this process. Remember that not all learning happens at school—you must work as a team and YOU are the advocate for your child.

School staff always look for the least restrictive environment for your child.

Let’s face it our kiddos may not be the easiest to engage or control in a school setting. Disruption of other students plays a role in what setting they are taught in.

School staff in center-based or transitional classes teach to your child’s specific educational level.

Staff must teach to all the students in a class and truthfully that means teaching to the most common student level.

Even if your student is in a transitional based program or a center-based program, that may not mean they are being taught at their educational level.

Bottom Line:

If something is not written into the IEP, the school does not have to do it. Advocate for your child.

A story in the NBC Nightly News segment "Inspiring America" warmed my heart.  As a parent of 2 special needs children I often think about what my children's adult life with hold for them.  Foremost in my mind is if they will be able to hold down a job that will provide them with a feeling of accomplishment and purpose.

A story on the news caught my attention and offered hope.  The "Hugs Cafe" located in McKinney is staffed in large part by persons with special needs.  It was clear to see the positive impact the cafe has both on its staff and its customers.  Click on the link below to see the entire story.


Sensory Rooms

What is a “Sensory Room”? This term is used very broadly these days. Basically it is a space to specifically designed to meet an individuals need for sensory integration, calming and to promote positive self-change.

I can remember back to my childhood when I was sent to take a time out. Interestingly enough at that time the space children were sent was often a corner or specific chair devoid of distractions or activities. When I felt “calm” I was allowed to return to my previous activity.  We now know so much more about meeting the need for persons with special needs benefiting still from a calming/soothing environment, but also benefiting from one that also is stimulating to their senses.

Sensory Rooms are specifically designed to provide a wide range of stimuli and positive input for an individual using a safe environment. Colors, lights and sounds are used to set a soothing environment. Crash pits, soft balls, indoor swings, climbing walls, monkey bars, etc. are all examples of items that can be used in a Sensory Room.

Would a sensory room work for your loved one? Take note of external indications of someone who may benefit: hands over ears, rocking, disengaging from group activities, becoming agitated—sometimes to the point of lashing out physically all may be indicators. Some may indicate verbally by asking for quiet, telling others to go away and saying they want to be alone, yelling, or crying.

If you believe this may work well for your loved one—start small by taking note of activities they may gravitate towards in non-structured times, next, set aside a specific area working to build a tailor-made space to meet your loved ones needs. The space should not be used for punishment, but instead encourage them to utilize it in moments where they are displaying distress. Leave it available for them to seek it out 

Dealing with “Outsiders”

I use the term “Outsiders” to refer to people who do not on a day to day basis have family members or other loved ones with Special Needs.

It is hard to deal with the day to day requirements of taking care of loved ones with Special Needs—it is even worse when you also have to deal with negative comments of others. Let me start this by saying that only you understand fully what it takes to care for your loved ones. Looking at your situation from the outside is a very limited view; unfortunately, knowing this does not make it easier to deal with “outsiders”.

Comments come from strangers, friends and even family members. Some questions you get asked straight out:

“Why would you bring a child like that to a restaurant?”

“You actually get paid to parent your own children?”

Other comments are made behind backs, but are clearly meant to be heard.

“I hear they got a fence put in for free—well not so free, we taxpayers paid for it.”

“They are why insurance costs so high for the rest of us.”

And my favorite of all time was a comment from my own father who no less gave our children this ringing endorsement—“They are not as bad as I thought they would be”.

I have easy comebacks in my head for all of these remarks, even the ones not directed to me. I choose to hold my tongue as I do not know the situation of others. It should always be enough to know that we all care for our loves ones and strive to get every need they have met. If it means stretching out to find resources and the ability to pay for them—so be it. Hold your head up high with the knowledge that you are doing all you can to allow your loved one to have the best life possible.

OMG..I have a sensory room

It took me a few weeks after investigating and blogging about sensory rooms to realize that I have a sensory room! Maybe you do too. My bedroom has been designed around my tastes and to create a calming environment. It is done in rose, purples and green. I have a beautiful tiffany-style lamp beside my bed that really beyond its dim, warm light it is not bright for any use as a light source. I love to burn candles and have potpourri to provide scents to calm my frayed edges. I use bath products and oils to enhance long warm soaks in the tub.

My husband and my bed has an electric blanket on it that my husband and I will turn on for each other to ensure we are welcomed into a cozy sleep in the fall and winter months.

Whether it be called your bedroom, your craft room or even your man cave; I want you to ask yourself—Do I have a place that feels made for me? Do I have a place in my home that surrounds me with good feelings? For all the things you do for others—this you do for you.


Preparing for Summer Camp

It is that time of year again…Summer Camp can not only be a wonderful experience for your camper, but it also can provide much needed respite for Caregivers. I have found for many parents it is also a time of great concern. The most often heard comment by families is that they are unsure how their loved one will do away from home.

There are a number of things that can be done to decrease the anxiety of both the campers and the caregivers.

1. Make sure all medical devices and medications go with campers in a manner approved by the camp. Be sure to pack incontinence products if needed—a little above the number you expect to be used.

2. Provide stamped, addressed envelopes and paper for letter writing or drawing. Pencils and crayons are also good to include. Make sure to include a number of different address information so they can send notes to whomever your camper should choose. (Personally I include a sheet of labels with address for home, grandparents, friends, etc.)

3. Include a beloved stuffed animal, favorite pillow, blanket, book, etc.

4. If allowed, send free time activities…reading books, activity books, outdoor things like a Frisbee. Let your camper's functioning level and interests be your guide. Also remember the limited space to keep camper items and specific exclusions the camp may have.

Although this can be scary; remember that inclusive camps can provide wonderful opportunities for social growth and increasing levels of independence. The first time I sent my daughter to camp we were actually able to send her own Support Staff with her, so don’t think for a minute that I have not had my own anxiety regarding camp. After her first time, I received the camp report about her experience and they indicated she would do fine without her Support Staff. She took to camp staff well and has gone alone ever since.

Personally, my favorite camp is True Friends. This camp is the one I have found to have the most services to offer people 5 and over--yes, they have camp for adults also! They are solely for disabled campers. This can be a great experience for your loved one to be surrounded by peers experiencing challenges similar to their own. True Friends also offers different staffing ratios and a host of assistance for those with high medical needs. My daughter, for example, uses the 1:1 staffing ratio due to her needs. 

Some camps also offer family camp experiences. This may be a good way for you to check out a camp and make an introduction to the camp experience for your family member.

Happy Camping!

Shop and Give

You can place an order on Amazon and help a chosen Charity at the same time. Log into Amazon using: The site will look exactly the same as when you log into Amazon normally, but now you can place your order and choose charitable organization that Amazon will donate a portion of your purchase to.

Just as an example our chosen (local) charity generated $46.82 from our family last year... That same charity has received a total of $1,230.62. All charities receiving funds from have received a combined total of $321,230,298.08 (figure is as of August 2021).

You will see a short list of charities to choose from—they highlight different charities. Do not despair if you do not see your favorite. You can search for a charity in the “Browse” area. They have nearly one million organizations to choose from. You can also change your charity should you choose to spread your Amazon portion around to different organizations.   

Happy Shopping--and Giving!!!

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