APRIL, MAY AND JUNE NEWSLETTER
What does it mean to take care of you?
Do your parents manage your healthcare? Are your caregivers responsible for ordering your prescriptions, making appointments and talking to your doctor or nurse? If so, you may need to discuss sharing these tasks. 
 
One transition tool you might already have is a cell phone! Keep your provider information in your contacts, take a picture of your health history to have on hand for appointments.  Use the calendar to manage your appointments and the alarm for medication or treatment reminders. 

If you have a smartphone, health and transition apps are at your fingertips! Check out this YHT developed by McMaster University - My Transition App!

Learning to manage your health and your health care can take a while, so be patient with yourself. Learn about your health needs so you can 'Take Care of You'! 

Click here to read more about how to advocate for yourself! https://smoothmovesyht.org/yht-skills#d0966241-390f-45b7-a960-f14f8fa46a83

Summer Planning for Children with Special Needs

Summer vacation often poses a challenge for parents of children with special needs. You can find programs that will provide an engaging and enriching environment for your child, but it’s important to start thinking early about what kinds of activities your child would benefit from and what your options are.
Determining your child’s needs When choosing a summer program, it’s important to consider your child’s age, interests, and personality. You’ll
also want to think about how summer activities can help support your child’s year-round learning. Here are some questions that can help you determine what kind of summer program would be good for your child:
• What would your child enjoy? Many children have a particular passion, such as music or animals. If your child has a special interest like this, look for summer programs that would encourage her passion, such as a zoo pro-
gram or a music camp.

• What skills is he working on? A child who needs help learning to read could benefit from a program that provides
specialized reading tutoring. If he’s been focusing on socialization skills, a noncompetitive camp setting with lots
of interaction with other children could be a good opportunity to continue learning how to interact with others.
If he needs to acquire skills that will help him get a job in the future, maybe an internship would be a good idea.
Think about the goals he has been working toward during the school year and how he could continue making
progress over the summer. Your child’s Individualized Education program (IEP) can serve as a guide.

• Does your child have difficulty with new or unfamiliar situations? If so, a camp or other program may be challenging. Talk with other parents in your child’s class or your neighborhood to see if your children could attend a program together.

To continue reading click the link to the article: http://fcsn.org/camps/summer_planning.pdf
Children's Hospitals Grapple with Young Covid 'Long Haulers'
A slumber party to celebrate Delaney DePue’s 15th birthday last summer marked a new chapter — one defined by illness and uncertainty.
The teen from Fort Walton Beach, Florida, tested positive for covid-19 about a week later, said her mother, Sara, leaving her bedridden with flu-like symptoms. However, her expected recovery never came.
Delaney — who used to train 20 hours a week for competitive dance and had no diagnosed underlying conditions — now struggles to get through two classes in a row, she said. If she overexerts herself, she becomes bedridden with extreme fatigue. And shortness of breath overcomes her in random places like the grocery store.
Doctors ultimately diagnosed Delaney with COPD — a chronic lung inflammation that affects a person’s ability to breathe — said Sara, 47. No one has been able to pinpoint the cause of her daughter’s decline.
“There’s just no research there,” she said. “Kids are not supposed to have this kind of condition.”
To read this article click here: https://khn.org/news/article/children-covid-long-hauler-clinics-pediatric-hospitals/
Developmental delays: What you need to know
“How old was yours when she first rolled over?”

“Mine has been talking in complete sentences for months!”

Conversations about meeting milestones is common among proud parents and caregivers. It’s exciting to see your child learn new things and explore the world. As your child develops, you want to share the news with people. It’s also common to compare what your child can do to other kids — or even compare them to what your older kids did around the same age.

But it can be nerve-racking to see or hear about other kids passing milestones before your child does. You may be concerned about developmental delays, and what they mean. Here’s what you need to know.

A word from our Executive Director, Dr. Charles Michel!
Hi Everybody!
As parents of children with unique needs, I think we can agree that there is a certain amount of skill and a larger amount of luck necessary while raising them. As the old American Red Cross sign used to say (when referring to the picture of an adorable baby with a tag around his ankle), “If only they came with instructions.” My wife’s and my son was our first child to raise and we had absolutely no clue what we were doing. So, every time we made a decision about his life, we always experienced uncertainty as to the effectiveness of the proposed course of action as well as to what the long-term implications might be.
One such decision was the conscious choice to have him attend every IEP meeting from 1st grade through high school. Our intent was to ensure that he could identify and articulate his needs and to learn the difference between his needs and his wants as well as to know those things to which he was entitled as opposed to those things that would “be nice to have”. At the time (this was in the 80’s and 90’s), very few parents were having their children attend their IEP meetings.
Well…on Thursday, March 23, 2021, I watched as my son addressed a group of Louisiana legislators, individuals with disabilities, parents of children with disabilities and professionals during our LACAN Legislative Roundtable. Watching him address the needs he, and others who need the services of Direct Support Workers all experience, and why legislation and funding for a pay increase for those Direct Support Workers is so critical to those who rely on their services, made me realize that, at least, THIS ONE COURSE OF ACTION, has paid off. His mom and I now know that we did something good for him every time we had him attend an IEP meeting. He has demonstrated an ability to advocate for himself AND for others who have similar needs.
Craig has met many milestones during the 39 years past his extended life expectancy (which was only 18 months of age). He graduated high school, earned a university degree, held a full-time job, supported himself until he had to medically retire, lives independently with support and he has made a real life for himself. None of those things would have been possible were it not for the fact that he learned to differentiate between wants and needs, and he learned that anything worth having is worth the work needed to make it happen. So, while his IEP meetings focused on defining FAPE for his school years, his presence defined so much more. The experience of his attendance defined his life!!
As we all continue to struggle and wonder if what we are doing is what is best for our children, know that at some point, those things that you are doing today that are MOST right, will expose to you, at some point in your child’s future, just how great a parent you are being to your child today.
Much like waiting a year to be able to have a vaccination against COVID-19 (if you are so inclined) so that our lives can return to some semblance of normal, delayed gratification is the name of the game when parenting most children…but much more so when parenting children with any special needs.
I hope you can sleep a little bit better tonight knowing that we are our children’s best hope and just by virtue of the fact that we keep trying, we are also their biggest gift (even if they don’t know it yet)!! So, keep making those decisions that will shape your child’s future!
Have a great Spring season.
LaCAN (Louisiana Council’s Advocacy Network) furthers the Council’s mission by advocating for policies and systems that support inclusion everywhere people learn, work, live, and play. LaCAN advocates for service systems that support children and adults with disabilities to live in their own homes and be fully-included and participating members of their local schools and communities.
LaCAN provides information and support to individuals wishing to effectively advocate for systems change in the areas of home and community-based services, education, and employment. Regional LaCAN teams include individuals with disabilities, their family members, and professionals. These members are notified by email or phone when communication with state agency officials, legislators or the Governor is necessary.

For more information on LaCAN and to join please contact Julie Folse at jsmith@lacanadvocates.org or 985-447-4461.
UPCOMING WEBINARS!!!
Congratulations to our laptop winners: Chelsey Liebert and Davelyn Patrick
Welcome Our New Board Officers!
Erica Broussard, Board President
Tyra T. Mitchell-Poree, Board Vice President
Kim Basile, Board Secretary
Kimberly Simoneaux, Board Treasurer
Please visit www.blfhf.org for a complete list of our board members!
Our Staff!
Charles Michel, Ed.D
Executive Director
Phone: 985-447-4461
 
Julie Folse
F2FHIC Program Supervisor/Region 3 LaCAN Leader
Phone: 985-447-4461
.
Renee Frye
Education Specialist
E-mail: rfrye@blfhf.org
Phone: 985-447-4461
 
April Young
CSHS Parent Liaison
Phone: 985-447-4461

Nicole Neal
Early Steps Community Outreach Specialist
Email: nneal@blfhf.org
Phone: 985-447-4461