Becoming a parent comes with so many responsibilities. One of these responsibilities is making healthcare decisions on your child’s behalf. For the last 20 years, my career has been dedicated to supporting people with disabilities and their families. I have met hundreds of families. It is not uncommon for a mother to say, "my baby was fine. She was meeting her milestones. After she got a shot she got a high fever, had seizures and has never been the same." I am not a medical professional. You can do a google search and find evidence and testimony to validate whichever side of the controversy you lean towards. 

I had my first child 7 years ago. I was really torn about vaccinations. On one hand, the shots protect against vey serious childhood illness. On the other hand, the recommended shot schedule fills tiny little bodies with many chemicals and viruses at the same time. Can that really be safe? (That was my biggest question). I was so fortunate to meet the man who became our family doctor. He is a homeopathic doctor who is in support of childhood vaccines. But he let me know we have options. After discussing pros and cons with our doctor, we agreed on a delayed schedule. We chose to start vaccinations at age two. We chose to do only one vaccine series at a time (for some reason it comforted me to have as little co-mingling of chemicals and viruses as possible). This schedule assures that our children have all of the required vaccinations in time to start kindergarten. (Each state has different vaccination laws regarding public school).

My intention is not to persuade you to either side of the controversy. My intention is to let you know that you have options. You will not be told of your options unless you bring it up to your child’s healthcare provider. Do your research. Talk to your Pediatrician. Most will give you pressure to follow the APA shot schedule, but please know that you don’t have to. 

Proud can find the ingredients in each vaccine by doing a simple google search.

The new school year is in full swing. For a lot of children, homework time is no fun. For children with ADHD, homework can be down-right painful. According to Vicki Siegel in an article published on ADDitudeMag.com, " Homework demands more discipline and consistency than many children with attention deficit disorder can muster." You can make homework time easier for yourself and your child by creating a routine built around three key questions: When? Where? and How?

1. When?

• Schedule homework for a set time each day. Base this on your childs temperment rather than what is most convenient for yourself. Perhaps he is at his best right after school, or maybe after an hour of down time. Avoid late evening.
  
• Be consistent from day to day. If after-school activities interfere with consistency, post a daily plan or weekly calendar that includes homework start times each day.
• Schedule enough time to complete assignments without rushing.
  

• Give advance notice of homework time. This is so important. Children who have ADHD do not easily shift from one activity to another.

2. Where?

• Help your child select a homework place. Try the kitchen table, where she can spreat out materials. Or perhaps your child would like a desk in the quiet den.
• Steer clear of proximity to electronics. But if your child concentrates best with soft noise, try some gentle background music.
• Stay nearby (if possible). Kids with ADHD concentrate better when they know you are near. If your child needs to use the bathroom, remind him to come right back.

3. How?

• Set up rules. Print a copy of the rules to review with your child. Specify start and finish times, place, when and how long breaks are, and that you will be nearby to help.
  
• Help, offer assistance, but do not do the homework for your child.
• Avoid arguments–calmy refer to the homework rules.
• Help him start. Make sure your child knows what the assignment is and how to proceed. Offer assistance that matches his learnal style. For a verbal processor, read directions out loud to him. For a visual learner, show him how to use highlighters and colored markers to outline key words and sentences.
  
• Keep him going. If your child tries to stop before he is finished, encourage him to go on a bit longer, and remind him there will be a break soon.
• Give her a break. Kids with ADHD may become fatigued due to distractibility, challenges to concentrating, frustration and restlessness. Help your child recharge by scheduling frequent, short breaks.
• Review your child’s work when he is finished.
  
• Offer praise. Compliment not only the work, but staying on task and focusing. Don’t only praise when the work is finished. Praise the process!
• Give rewards. This may be a favorite snack or extra playtime.
• Don’t give up. Homework time can be challenging in any household. Helping your child set a routine and feel good about academic accomplishments will go a long way.

Services for people with disabilities are changing. In this economic environment, it seems all government funded programs are competing for dollars, and there are fewer dollars to compete for. I urge you, in this election year, to get to know the people who are running for office locally, at the State level, and for President. Learn their stance on Medicaid funded programs for people with disabilities. This is your opportunity to let your voice be heard. Educate yourself and then go vote! This is such a critical time for services for people with disabilities. I am currently navigating through drastic cuts in Indiana which have resulted in a new service delivery model. This model is much less client oriented. I will be at the polls on election day taking a stance for children with disabilities. My voice will be heard. Please join me!

This post was not researched. I have no famous quotes to share. This
post comes from my heart. It comes from 35 years of experience. I want
to preface this post by saying that my parents are great people. I truly
believe they did the best job raising us that they knew how. They had
no instruction book on parenting, especially when one child has
significant disabilities. My sister has Spina Bifida.
My brother was six years old and I was four when our sister was born. I
remember very clearly the day my mom came home from the hospital after
my sister’s birth without a baby. I remember my mom and dad telling my
brother and me that our sister was sick and couldn’t come home. From
that moment, at the ages of six and four, my brother and I knew that our
sister would need our parents more than we needed them. Without ever
saying a word, we knew that we needed to take care of each other. And so
it was. Our parents spent almost every summer at the Children’s
Hospital three hours from our home. Our grandma stayed with my brother
and me most summers. I made sure my brother’s clothes matched. He made
sure I drank my milk and ate something healthy. We both had summer
birthdays that we celebrated in the fall when everybody was home from
the hospital.
Now, I’m not trying for a sob story here. I just want to paint a very
clear picture of the responsibility I felt to take care of myself so my
parents could take care of my sister. They never asked this of me. It
just was. And I accepted it. And I love my family to pieces. But there
are memories of my childhood that do not include my parents. And their
are things I didn’t get to do because my sister needed them more. The
purpose of this post is to give parents some insight into what siblings
of children with disabilities may feel. Of course no two families are
the same, but I would like to give a list of things that I wish were
different about my childhood:
 
1. I wish I could have celebrated my birthday on July 20 every year. That is the day I was born.
2. I wish my parents could have gone to watch my gymnastics lessons and softball games.
3. I wish I didn’t have to learn how to give an enema at the age of 8.
4. I wish I didn’t have to leave class in fifth grade every 2 hours to take my sister, who was in first grade, to the bathroom.
5. I wish I didn’t feel guilty for wishing these things.
 
On the other hand, I also have a list of things I am grateful for because I have a sister with a disability:
1. I’m glad I learned how to love people unconditionally and see the value in every human life.
2. I’m glad that my brother and I grew up as best friends and had such a special relationship.
3. I’m glad that, even though my parents seemed to care physically for
my sister more than they did me, I never doubted that they cared for me
emotionally just the same.
4. I’m glad that I chose a career where I get to impact change for
people with disabilities and help them to achieve fullness of life.
5. I really, truly, from the bottom of my heart, am glad that Jill is my sister.
 
Here are just a couple of practical suggestions for parents to learn from my experience:
1. Enlist a support system…friends, family, neighbors….whomever is
willing to be there for your family. Allow others in your support system
to babysit for your special needs child every  now and then so you
can do something fun with their siblings.
2. Seek services through your State when your child is young. There may
be a waiting list. You do not have to do this alone. Look into respite
services to give you a break so that you will be fresh and completely
present when your family needs you.
3. Do not forget special milestones of the siblings. The little things really do matter.
 
I want to end by saying I love my family very much. My experiences and
relationships within my family have shaped my career, my attitude, and
my values.

The topic of guardianship over a loved one with a disability can be emotional for some families. People with cognitive disabilities, and those who care about them, often have different ideas about whether guardianship is a good idea or not. Like most things, it depends on the situation. Below are some frequently asked questions about guardianship?

1. As a parent, am I automatically the guardian for my adult son or daughter with a disability?

No. At the age of 18, the law considers a person emancipated, regardless of the severity of the disability. Only a judge can appoint a guardian for a person over the age of 18.

2. How do I become my child’s guardian?

A parent must initiate a fairly simple court proceeding in order to be designated guardian. This can be done prior to the age of 18, or at any time after that. 

3. What does a guardian do?

A guardian makes all decisions about the care and treatment of the person under guardianship.

4. Who should serve as guardian?

A guardian is the person’s chief advocate, so he or she should have an interest in the person with a disability and be willing to take the time to learn about the person’s needs. Ideally, the person selected as a guardian should live close to the individual and know where to turn for professional help in making decisions. Most often, it is a parent or other family member who establishes guardianship. 

5. Are there alternatives to guardianship?

YES!!! If full guardian ship is not necessary, other options include Financial Power of Attorney or Medical Power of Attorney.

Most states will offer free legal council if you are wondering if guardianship is right for your loved one. This is an important decision to make as your child becomes an adult. 

This week is National Direct Support Professional week. If you know a person who cares for people with disabilities, please take a moment to show your appreciation for the work they do.

“In life you can never be too kind or too fair; everyone you meet is carrying a heavy load. When you go through your day expressing kindness and courtesy to all you meet, you leave behind a feeling of warmth and good cheer, and you help alleviate the burdens everyone is struggling with.”

– Brian Tracy

Lets face it–controlling the symptoms and behaviors associated with many diagnoses can be quite puzzling. While medications can be very beneficial, they can also cause unwanted side effects. Furthermore, there is a lot of trial and error when a medical practitioner is prescribing a medication menu. So, what is a parent to do if a proper “med cocktail” cannot be found? What is a parent to do who wants to exhaust all possibilities before subjecting their child to psychotropic medications? My answer to you is to switch up your child’s diet.
 
Most people, when they hear the phrase “gluten-free diet,” automatically think of celiac disease. While it is necessary for people with celiac disease to eliminate gluten from his or her diet, it is also proven to be beneficial for people who have ADD/ADHD, autism, multiple sclerosis, cystic fibrosis, thyroid disease, and other autoimmune disorders. People with these diagnoses often have a sensitivity to gluten.
 
For those of you thinking that the proof is in the (gluten-free) pudding, let me recount for you a story of a child who I know. He has autism and had many of the stereotypical behaviors that accompany autism. As he grew older, he became physically aggressive. His physician came up with a med cocktail that, indeed, decreased his behaviors. However; these medications totally changed his personality and left him a bit lethargic much of the time. After discussing their displeasure with the change in their son, the parents were told by the doctor to try a gluten free diet. This child was able to be successfully weaned off of all but one medication. He is displaying far fewer behaviors, and his own personality has returned.
 
To be honest, I don’t know if every family who tries this has the same results, but there is certainly no harm in trying. Once upon a time, it was very difficult to eat a gluten-free diet. However; this type of diet is growing in popularity, and most grocery store chains sell gluten-free brands. Out of curiosity, I took a group home menu that was developed by a dietician. I was able to find gluten-free products item for item on the menu at my local grocery store. So, if your entire family doesn’t want to switch to a gluten-free diet, you can still serve the same menu to everybody in your family. It should be noted that households that switched completely to gluten-free diet to support the need of the child report over-all better health across the board.
 
In  no way do I mean to discount the benefits of pharmaceuticals. I have seen much success with the right med menu. This article is meant to provide an option to those families who have not had luck finding the right med menu, or who want to exhaust other options before going the route of medications. I advise families who want to consider this change to talk to your child’s doctor about the benefits of a gluten-free diet.
 
Bon Appétit!