Being an advocate for your child

In a perfect world, all children would get their needs met; however, in the real world, the only way children get the services they need is when they have a strong advocate. You know your child better than anyone else and are the best person to advocate for them. Being an advocate for your child requires you to:

 

·        Know your child’s needs

Being a parent is sometimes difficult when you are determining if your child does need special services. Pay attention to how your child plays around other children, watch how other children are developing compared to your child. Note if you are doing anything differently than other parents to help your child be successful. Also, do age appropriate educational activities with your child to see if they are on target. If you have concerns, get them addressed as soon as possible. Early intervention is the key to helping them overcome their challenges. If your child has a diagnosis, learn everything about their disability, so you can help them and educate others.

 

·        Know your child’s rights:

To be able to get your child the services they need, you have to learn the system. If your child is younger, familiarize yourself with the Early Intervention Program (EI) and the Americans with Disability Act (ADA). If your child is older than three, you still need to know about ADA, but you also need to be familiar with Individuals with Disabilities Education Act (IDEA) and Section 504 as you receive services through the Early Childhood Program at your local public school. Your child has a right to a “FREE appropriate public education” that includes “specially designed instruction” services (if they qualify), but you have to seek out these services.

 

·        Be prepared with records and notes

Being prepared is extremely important in supporting your child. I keep a file cabinet with organized folders of doctor’s visits, therapy notes/ assessments, examples of work, and personal notes. This has really helped me when filling out medical paperwork and applying for special disability insurance. It has also helped with talking to my doctor about evaluations because I have documentation of my child’s strengths and weaknesses.

 

·        Communicate the need/ ask questions/ be courteous

When advocating for your child, it is important to be specific about their needs. You need to let them know your concerns and have your documentation to prove your concerns. If you have ideas on solutions, share those ideas. For example: My child has a hard time with large crowds and noise, can he leave class a little early or late to avoid the anxiety that this transition causes? Remember to always be nice and courteous because being rude can work against you.

 

·        Have a good relationship with therapist/ teachers

Talk to your child’s therapist or teacher to check in on your child’s progress. Ask for things to work on at home, do those activities, and have your child show the therapist or teacher that they did it. This will show the therapist or teacher that you want to work with them to assure your child’s success. It will also open up the lines of communication if there ever is a concern.

 

·        Be involved:

It is very important to be involved in your child’s learning and growth so that you will know their strengths and weaknesses. By knowing their strengths, you can help build their self esteem and by finding their weaknesses you can learn strategies to help them overcome them.

 

·        Evaluate

Constantly evaluate your child’s progress. If your child is not progressing like he or she should, arrange a conference and discuss your concerns. If your concerns of your child are not being addressed, maybe you need to consider a different teacher, therapist, or a new environment. When we first moved to our new state, we tried three different pediatric therapy offices before we found the perfect fit. The perfect fit makes a huge difference in your child's progress. It is worth seeking out.

Sensory and Food- Sometimes a Little Change Makes a Big Difference

Last week was my husband’s birthday. For his birthday, my children wanted to make daddy a cake. They picked out the cake flavor, icing, and candies. When we got home, they helped me put everything in the bowl, stir, and prepare it in the pan. While it cooked for 20 minutes, they sat by the oven and watched. Then, they watched the cake cool. After cooling, they had the best time putting the icing and candy on the cake. I had to work very hard to keep them from eating it. All they talked about for hours was this cake and eating it; however, once daddy came home and we cut the cake, they were not interested. My son said he didn’t want it because the cake was now broken.

It is so interesting to me that the slightest change to a food can either keep my children from eating it or make them want more of it. I see this often with my picky eaters. A lot of the time, it is not the food itself that they are rejecting, but the presentation of the food. For example, they were eating the cake as a whole, but didn’t want it sliced.

Here are some changes we have made in the presentation of food that have helped:

1.      Separate all food into different sections on a tray/ plate or into different bowls

Last week my son wanted peaches and pancakes for breakfast. He was so excited to eat them. His child plates with sections were dirty, so I deicide to put his food on a regular plate. When I was carrying his plate to him, some of the peaches (on the opposite side as the pancakes) moved down the plate and were now touching his pancakes. He said that his food was now ruined. He wouldn’t even try it because the peaches touched the pancakes. I ended up remaking his meal and putting the peaches and pancakes in two separate bowls. He then ate every bite.

 

2.      Change the size of the bite

At Subway, I tried to get my daughter to eat some of her turkey sandwich. I broke the sandwich into small bite size pieces and tried to feed them to her. She kept spitting them out. My son after five minutes of this told me that I was doing it all wrong. He told me that the therapist “just takes a pinch”. He took a pinch of bread, chip, and turkey and put them together. Then he told my daughter to open her mouth. She did and ate it! Instead of a bite, she wanted a pinch and a chip to be added in.

 

3.      Change the consistency

One of our favorite foods to eat as a family is beans. My husband grew up on beans and rice. Both of my children have refused to even try them until a month ago when my daughter’s speech therapist recommended changing the consistency. We gave the kids their beans and a fork to smash them. The kids had so much fun smashing their beans and for the first time ever, they put them in their mouth!

 

4.      Have the child pick out a special plate or bowl for their food

Sometimes the presentation comes down to a special plate or bowl. Feeding disorders have a lot to do with control. The child wants to feel in control of their eating. Letting them pick out the “Mickey” plate or “Cars” bowl can sometimes make the difference on whether or not they eat the food.

 

5.      Make sure the spoon isn’t making the bite too big

Last week during speech, my daughter was having a hard time with applesauce. The spoon she wanted to use was giving her a large bite. Once the spoon was switched, she had no problem.

 

Our Speech Therapist has really helped me look at food differently. If my child is struggling with eating, I try really hard to find out what I need to change to make a difference in their eating. To me, it is not a big deal if I need to make the bites really small or puree the food. I just want them to take a bite. Once they get use to the taste and texture, they will feel more confident in what they are eating. After they become more confident, I can increase the thickness or size of the food.

 

The Fourth of July with Sensory Processing Disorder

My least favorite holiday out of the year is the Fourth of July because it can be very difficult when you have children with Sensory Processing Disorder. The key with my kids and any holiday is preparation. To prepare them for July Fourth, we talked about fireworks, read a social story about fireworks, and did firework crafts. I started by talking to them about fireworks. When we drove past a fireworks stand, I told them that people were buying fireworks to celebrate America’s birthday, and we were going to celebrate too. Then, we read a social story about July Fourth:

In July, we celebrate America’s birthday. People love to celebrate America’s birthday by eating yummy food, listening to songs about America, and watching fireworks. During the day, we will eat yummy food. We will cookout on the grill and even eat cake. When it gets dark outside, people will start watching fireworks. Fireworks are very pretty to watch, but make a loud boom sound. A lot of people listen to songs about America when they watch the fireworks. They have to turn the music up loud, so they can hear it over the boom. When the weekend is over, people will put up their fireworks until next year.

 

After reading the social story, we did three fireworks crafts.

1.     We did fireworks in a jar by filling a jar ¾ with water. Then, we added four tablespoons of oil on top of the water. Last, each child picked a color of food coloring for their fire work, and put four drops of their color on top of the oil. We then closed the lid and watched our fireworks in a jar. For extra effect we talked about how fireworks go “boom”, and we started making firework sounds.

 

2.     We made fireworks with paper. My son cut multiple strips of paper for us using a variety of colors. While he was cutting, my daughter and I hand over hand drew three circles with a white crayon onto a black piece of paper. Then, the kids took the strips and glued them along the circle lines to make fireworks. Once glued the kids would touch the fireworks and say boom!

 

3.     We made fireworks with paint. We put our hands in paint, and put them all over black paper to make fireworks in the sky. Every time they put their hands down onto the paper, they said boom!

 

After I prepared them for the Fourth of July, my son was eager to watch the fireworks. I got excited, and thought that this year might be the year. On July 3^rd, we eased them into the fireworks by watching a firework show in our car while listening to patriotic music. Both children seemed to do okay with that. They both loved saying boom and pretty. Since our car was parked several miles away from the fireworks, it wasn’t too loud. This night was a success! Yay!

 

Since they did well on July 3^rd, we thought we would try watching some fireworks outside our house (That way it would be easy to retreat if we needed to). We went outside with both kids and waited. Once the fireworks started going off, my son yelled boom with each one, laughed, jumped around, and ran in circles. He seemed to love it, and was even seeking out the loud sounds. It is always hit and miss with him. Sometimes he loves loud things and other times he hates them.

 

My daughter hates loud noises though. She started crying and screaming, “No!” and “Bye, Bye!” She didn’t want the head phones, she just wanted to go. I took her inside while my husband stayed outside with my son. Her whole little body was shaking because she was so scared. I went ahead and gave her a bath to try to calm her down. Then, we put on our jammies and cuddled while being wrapped up in a blanket. Once she was calm, I turned the television on, and we watched the fireworks go off to music. Towards the end of the show, I even got her to stand up and dance with me to the music.

 

We now have one more night of fireworks. I am not sure what our plan will be tonight. Most likely, we will watch the kids, see how they respond, and go from there.

 

A Journey Not Planned

I am a huge planner. In college, I had mapped out what my future was going to look like. I planned on graduating, immediately finding a teaching job, marrying my college sweetheart after a year of working, starting a family a year of being married, and raising my children. My plan was on course until we tried to start our family. After five years of trying and going to a fertility specialist, I finally had my baby in my arms. A year and a half later when my baby stopped talking and wouldn’t respond to his name, my life changed. I didn’t need an evaluation or a diagnosis to know things were going to be different than planned. Our days filled with play dates, adventures to the park, and no set schedule were soon replaced by therapy sessions, evaluations, and extra practice at home. The best way I can describe the feeling is in this essay.

 

WELCOME TO HOLLAND    

By Emily Perl Kingsley (a mother of a son with Down Syndrome)  c1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

Everyday my children are showing great improvement, and one day we might make it to “Italy”. For now, we are in “Holland” and are doing great! We have met some of the most incredible people here that have changed our lives. We wouldn’t have met them if we would have stayed on course like planned.

In the past years, I have learned that life doesn’t always follow our plans, but we can still find joy and blessings in our new journey. I hope that this essay brought you comfort and encouragement like it did to me.

The Vaccine Debate

Last night a mom posted a simple question on a special needs support site. She said, “Debating on vaccinated my child. Did you vaccinate yours?” Within an hour she got over a hundred responses. Some people were informative, some were supportive, and some were just ugly.

It really breaks my heart to see people so ugly to each other. No one knows the responders stories who wanted to share with this mom, and no one knows this mother or her situation to judge her for asking a question.  At one time, I too, asked this question. Before my son was one, he was ahead on all milestones. Something changed months after his first birthday. He seemed distant, became nonverbal (only made humming sounds instead of words), and no longer made eye contact. As a parent, I did panic! I spent my nights researching everything. I wanted to know what caused this, and what I could do to help him. One thing that came up a lot was vaccines. I read several stories and watched videos showing the vaccine opinions of parents who experienced the same thing. I researched vaccines, MMR, and mercury in vaccines (thimerosal). Then, I arranged a meeting to talk to my son’s doctor. In the end, I did choose to vaccinate my son, and when my daughter was born, we chose to vaccinate her too. It was the right choice for our family. The pros of getting my children vaccinated, outweighed the cons.

I understand the feeling of being scared and not being able to sleep at night because you want to do the best thing for your child. I know what it feels like to be on your knees praying for God to direct your path in this decision. It is okay and great to ask questions, to debate, and to find truth. No one really knows your battles and the battles of your child like you do. Ignore the ugly, gather up all the information you receive, and follow your heart. I know you too are trying to do what is best for your child. This journey is not easy, but you can do it!

Special Needs Acronyms

This weekend I was talking to a mom that just started her daughter in therapy. She told me that she needed a pamphlet with all the new acronyms that are thrown around the special needs community. Immediately, I thought she was right, and I knew that I needed to have a blog entry about common acronyms used in a pediatric therapy office or during special educational meetings.

 

Special Needs Rights Acronyms- Here are acronyms explaining the rights your child has. As an advocate for your child, it is important to know their rights.

ADA = Americans with Disabilities Act

DD Act = Developmental Disabilities Assistance and Bill of Rights Act

IDEA = Individuals with Disabilities Education Act

NCLB = No Child Left Behind Act

 

Special Needs Paperwork Acronyms- Having a special needs child in school requires special meetings. Here are common acronyms discussed in those meetings.

ABA = Applied Behavior Analysis

 

ADL’s = Activities of Daily Living

APR = Annual Performance Report

ARD = Admission, Review, Dismissal Committee

BIP = Behavior Improvement Plan

BMP = Behavior Management Plan

CAP = Corrective Action Plan

CARS = Childhood Autism Rating Scale

DX = Diagnosis

FSP = Family Support Plan

IEP = Individual Education Plan

IFSP- Individualized Family Service Plan

IQ = Intelligence Quotient

ITP = Individualized Transition Plan

RTI = Response to Intervention

 

Special Needs' Programs Acronyms- These programs are offered for free. It is important to familiarize yourself with them and know their acronyms.

EC- Early Childhood

EI = Early Intervention

SPED = Special Education

 

People Involved with Special Needs Acronyms- Here is a list of acronyms of people that might work with your child.

BIS = Behavior Intervention Specialist

ED DIAG = Educational Diagnostician

IA = Instructional Assistant

OT = Occupational Therapist

PCA = Personal Care Attendant

PT = Physical Therapist

SLP/ ST = Speech Language Pathologist / Speech Therapist

 

Diagnosis Acronyms- Many parents will abbreviate their child’s diagnosis. Here is a list of the most common pediatric diagnosis acronyms.

ADD = Attention Deficit Disorder

ADHD = Attention Deficit Hyperactivity Disorder

APD = Auditory Processing Disorder

AS = Asperger's Syndrome

ASD = Autism Spectrum Disorder

BP = Bi-Polar

CAPD = Central Auditory Processing Disorder

CD = Cognitive Disability

CF = Cystic Fibrosis

CP = Cerebral Palsy

CVPD = Central Vision Processing Disorder

DAS = Developmental Apraxia of Speech

DD = Developmentally Delayed

DS = Down Syndrome

DYX= Dyslexia

ED= Emotionally Disturbed

HFA = High Functioning Autism

HI = Hearing Impaired

LD = Learning Disabilities

LFA = Low Functioning Autism

MR = Mental Retardation (IQ less than 70)

OCD = Obsessive-Compulsive Disorder

ODD = Oppositional Defiant Disorder

PDD = Pervasive Developmental Disorder

SI = Sensory Integration

SPD = Sensory Processing Disorder

TS = Tourette Syndrome

VI = Vision Impaired

 

Looking at this list, it is easy to see how someone new to the therapy / special needs community could get lost in the jargon. I hope this list helps you understand what people are talking about.

Help with socialization

When my son was about a year and a half, our therapist told me one of the most important things I could do for my son was to get him out and around other kids. She encouraged play groups, activities like gymnastics, and churches that had mother’s day out programs. Over the years we have added to this list. Here is what we have done to help with socialization:

·         Playgroups- This has not always been easy. Some parents and children have had a hard time understanding as we work through this process; however, we have found some that are a great fit. If you are having a hard time finding friends for your child, you can always look for someone at therapy.

 

·         Activities- We have done gymnastics, soccer, and swimming. They have been wonderful activities to work on socialization and are great for motor skills too. If you have a Little Gym in your area, I highly recommend it for gymnastics. They do learning units with the gymnastics skills to help with academics.

 

·         Mother’s day out- I choose a two year academic preschool for 3 and 4 year olds for my son, so he could improve socially, as well as academically.

 

·         Playgrounds- We go to indoor playgrounds like the ones at McDonalds and Chickfila, as well as local outdoor playgrounds.

 

·         Library- Our local library has been a huge blessing for teaching social skills. They have weekly activities including story time. During the summer, they have daily activities, and it is all free!

 

·         Social groups – With the rise of Autism and SPD, several cities have started social play groups that are facilitated by a behavior specialist or psychologist. Our son is in a group with five other boys, and they meet every other week in different social settings to work on social skills. You can find out if your city or town offers a program like this by talking to your therapist or contacting psychologist or behavior specialist in your area.

 

·         Church- Sunday school and childcare offered during bible study are also ways to help your child socialize. Along with socialization, they learn about God and his love for them which I think is pretty awesome!

 

·         Social programs- There are also social programs that you can purchase online to help your child. My favorite program is found at:  www.socialthinking.com . They offer social books for younger children. For school age children, they have a program called Superflex. It is a program about super heroes and villains. My son loves it! For middle school and high school, they have a book on social concepts, and it includes worksheets.

 

·         Social stories- These are short stories that you write or find online to help your child with a certain social skill like “Asking a Friend to Play”. If you write the story, keep it simple. One to two sentences per page. We have even drawn our own pictures in to reinforce what we have learned.

 

The best advice my therapist gave me was to get my child out there to help him not withdraw. It was very challenging at first. During social activities, he required a warm up time that sometimes lasted thirty minutes before he was able to join the group. There have also been several meltdowns while trying to learn social skills, but our efforts have paid off. Now, his warm up time is two to five minutes. On good days he walks right in. His eye contact and speech have improved, so he is feeling more confident talking to other children. There are days when he wants to withdraw, but on most days he is right there hanging out with children his age.