We have a new Featured Parent to introduce you to! Cindy is a parent to kids with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids?
Cindy Urso: My name is Cindy Urso. My daughter’s name is Ashley, she is 20 years old. My son’s name is January and he is 14.
FF: What is the nature of their special needs?
CU: Ashley has Down Syndrome and Jan has Aspergers Syndrome.
FF: What would you say is your biggest challenge in raising a child with special needs?
CU: I would have to say the biggest challenge for us has been ignorant people and bullying.
FF: What would you say is your greatest joy in raising your your kids?
CU: The greatest joy these incredible kids have brought to me is how much they have taught me about the world and what is really important!
FF: What would you say has been the biggest help to you in raising your kids?
CU: The biggest help I’ve had has been wonderful family and friends!
FF: Give us one tool you would hate to live without.
CU: One tool I absolutely couldn’t live without is the internet! It has brought me so much information, and I’ve met so many great parents because of it!
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
CU: One piece of advice to a parent just learning of a diagnosis is to be patient, don’t try to learn everything at once. Every child will do what they can, when they can. Love them just for them!
Cindy, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!
I’m going to be highlighting some products from the store on Wednesdays… Perhaps it’s just a cool tool, or maybe we’re having a sale. Frankly, sometimes we parents don’t have a helpful tool on hand because we just didn’t know it exists.
Today’s tool is the Versatile Tactile Cushion. Extra height for greater comfort! Fits smaller chairs — 12″ diameter Features one side with tactile “spikes” about 1/4 inch apart, and one smooth side. Can be used as a super fun tool to improve balance. Needle air pump required which is sold separately.
We have a new Featured Parent to introduce you to! Vera is a parent to kids with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids?
Vera Keane: Vera Keane and my kids are Maeve, aged 3; and Josephine “Josie”, aged 2.
FF: What is the nature of their special needs?
VK: Autism. Maeve has a severe diagnosis and SPD. Josie has a mild/moderate diagnosis.
FF: What would you say is your biggest challenge in raising a child with special needs?
VK: There are loads of challenges like grocery shopping, or traveling with them, managing ABA therapies as well as OT, but I would say the biggest challenge for me is getting Maeve to eat solid foods. She is on a puree yogurt type diet and has a hyperactive gag reflex that makes it difficult to get her to try new foods.
FF: What would you say is your greatest joy in raising your your kids?
VK: Every day, all day! I find that they are my source of joy, of inspiration, of unconditional love. Without them life would not be as interesting or motivating. They help me to see the wonder and amazement in the simplest things and I rejoice in even the smallest of accomplishments.
FF: What would you say has been the biggest help to you in raising your kids?
VK: My mother would have to be the biggest help in raising my girls. She is there for them no matter what and just because they have a “diagnosis” now it hasn’t changed them in her eyes.
FF: Give us one tool you would hate to live without.
VK: The knowledge of what I am dealing with would be hard to live without but as far as a functional tool… We use so many. I would say the most needed are my girls’ chew tubes.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
VK: I would say to them that even though they have a diagnosis now it doesn’t change who your child is to you, they are the same as they have always been. Now you can just understand their little quirks a bit better. Don’t strive to make them “normal,” just try to make them the best “them” they can be.
Vera, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!
I am a mom. I am a mom to kids with special needs.
I am a wife.
I am a daughter who cares for elderly parents.
I am a business owner – chosen so I can stay home geographically to care for all the relationships I just mentioned.
I am a caregiver. I have to take care of myself in order to take care of them. In the interest of full disclosure, I should add that I have stress induced ulcers (I test negative for the ulcer causing bacteria.) In other words, I’m not all that great at taking care of my stress and myself.
Are you? Are you getting enough rest? Going to the doctor – for yourself – as necessary? The dentist? Getting a shower in? Some quiet spiritual time for whatever path you’re on? A moment of meditation? How are you eating?
Obviously, I’m not all that great with any of the above – but I wanted to remind you that we all need to be. We are caregivers. We need to care for ourselves as well.
We have a new Featured Parent to introduce you to! Sue is a parent to kids with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids? Do you blog?
Sue: Sue. I am a mother of 6 kids with special needs, 2 are grown and out of the nest. My youngest range in age from 8-4. Blog: Mom on a Mission
FF: What is the nature of their special needs?
Sue: Isabelle is 4, she has autism and a seizure disorder. She was diagnosed when she was 16 months old. She is pretty much nonverbal. She does communicate with word approximations some signing and gestures and she is making great progress. She is very sensory seeking.
FF: What would you say is your biggest challenge in raising a child with special needs?
Sue: I think the biggest struggle raising a child with special needs is the isolation and lack of understanding and difficulty accessing resources. I have adult children who have disabilities. My children are not neurotypical. I have a child with bipolar disorder, 2 with autism, 1 with ADHD, and 2 with Fetal alcohol spectrum disorders. Four of my children are adopted. Having a child with unseen disabilities carries a whole new set of rules. You can not look into their eyes and see their struggles, they do not need a wheel chair or crutches, people can not see that their brain pathways are different, you can not see the sensory needs or the inability to communicate their needs. I am divorced and lost many friends and acquaintances over the years. It is a fight every year to advocate for their needs at school. It is a struggle to access healthcare benefits as the equipment and treatment they need is not always so clearly defined. It is hard to go to church, to shop, to go to the movies without people staring and pointing. People do not understand why children with autism act as they do and often see a child as misbehaving, acting spoiled etc.
FF: What would you say is your greatest joy in raising your your kids?
Sue: The pure joy that they bring. They do not have preconceived notions of what they should have or how things should be. They accept things as they come. They accept people for how they treat them. A simple smile, a hug, blowing bubbles or seeing your child sign I love you the first time makes it all worth it.
FF: What would you say has been the biggest help to you in raising your kids?
Sue: Finding supportive services and surrounding yourself with people who do understand. Not dwelling on the people who don’t get it. I have had to let go a lot of my inhibitions as well. Don’t be surprised to see me dancing and singing the Yo gabba gabba theme song in the market.
FF: Give us one tool you would hate to live without.
Sue: I have a couple of things in my home that are invaluable. Isabelle is very sensory seeking especially vestibular input, so we have one of the rainy day indoor swing sets that hang in the doorway of the kitchen. It is a lifesaver, all the kids love it and it can hold up to 175 pounds and has 3 different swings. We also have a textured exercise ball that provides a ton of input opportunities. One thing that I designed is a business card that I carry with me that briefly explains autism. I carry them in my wallet and will hand them out or leave them laying when we are out. It has sparked many great conversations and saves me from having to make excuses for her behavior.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
Sue: Soak it all in. It is ok to grieve, it is not what you thought of when you thought of becoming a parent. Then embrace the journey, educate yourself, and surround yourself with people who understand and can support you. Treasure every milestone because there will be many. Enjoy the ride!
Sue, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!
In working with children with various forms of Sensory Processing Disorder, I’ve come across a common theme: Constipation.
Upon identifying concerns, it is important to consult with your Pediatrician and/or Pediatric Gastroenterologist to confirm that problem is not related to any other underlying medical condition(s).
In cases of constipation, there can be multiple, often co-existing causes.Many children with SPD (sensory processing disorder) have poor eating habits due to oral sensitivity and eat only ‘white foods’ or similar low fiber foods. In addition, these children are often scared to relieve themselves and withhold due (but not limited) to:
Increased physical awareness of bowl movements and related discomfort due to super sensitive tactile systems
Fear of falling into the toilet due to poor balance
Fear of the noises in the bathroom ie: the ‘flush’, pipe noises etc.
A desire to control the environment.
Some children also present with hypotonia (low tone) and have difficulty digesting food in an efficient manner.
Constipation is terribly uncomfortable. Think of the way you feel when you are constipated. Words such as bloated, moody, sick, nauseous, sluggish and crampy may come to mind. Children with SPD who are constipated often complain of stomach pain and can become even more emotionally sensitive and are often explosive.
Dealing with food sensitivities and related constipation can be difficult but real progress can be made with effort and dedication. The following is a list of strategies I have found to be helpful.
Toileting
Decorate the bathroom with your child by hanging up pictures, placing favorite books or stuffed animals nearby, adding music. Try creating an environment that is as appealing to the child as possible (put this in perspective- we all enjoy our own bathroom comforts and reading our materials-don’t we?!)
Make sure the child is comfortable and posturally stable on toilet by placing a stool under his her feet and/or using a toilet insert
Have child choose and decorate the plastic exterior of the toilet insert
Have the child sit on the toilet for 10 minutes at least twice a day
Talk to the child about his/her toileting schedule including what he should expect ie: how long he will sit on the toilet. Prepare the child with your expectations.
Explain to the child the natural physical consequences of withholding (ie: stomach pain)
Include the child in the process ask him/her for ideas to increase cooperation and success
Praise, praise, praise and positive reinforcement. Start with praise for behaviors such as relaxed sitting on the toilet and/or tasting healthy new foods. Chart progress and reward
Have the child consistently look at and evaluate the quality of his/her stool (ideal stool should be medium brown, the color of plain cardboard with the consistency of toothpaste, approximately 4 to 8 inches long. There should be little gas or odor)
Eating
The importance of Eating Meals Together as a family cannot be emphasized enough. Children see others eating a variety of foods in a relaxed setting and over time become motivated to participate.
Encourage the child to start by smelling and tasting a small bit of food. Most times, repeated exposure to an undesired or new food is required before a ‘picky’ child is willing to eat.
Use appealing adjectives for healthy food such as sweet, tasty, delicious, fragrant, yummy, beautiful, crunchy, fantastic, and savory. Studies have shown that this increases the desire and perceived tastiness of the food
Include the child in food and menu preparation. Teach the child about the health benefits of good food
Increase the child’s daily fiber and water intake by using strategies listed above
Talk with your pediatrician about giving your child a stool softener such as Miralax
We have a new Featured Parent to introduce you to! Susie is a parent to a kiddo with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids?
Susie Hrenko: Susie Hrenko, and my son, Graham (6 years old), and daughter, Heather (5 years old.)
FF: What is the nature of their special needs?
SH: My son has Asperger’s Syndrome.
FF: What would you say is your biggest challenge in raising a child with special needs?
SH: I think the biggest challenge is treating your child like a regular kid. Yes, Graham has his limitations with his sensory and behavioral issues, but I still need to let him be a kid. For an Aspie, he’s very social. He wants to be a part of the group so badly, and sometimes it’s hard to let him go, knowing that it may end with a meltdown or with another child not understanding why Graham acts the way he does. The worry about how the other parents will react if Graham has a meltdown in front of them, even when I’ve explained things and they are aware of the diagnosis. It’s hard not to limit him based on what I think may happen as opposed to letting him try it on his own and put some of those social skills classes to the test.
FF: What would you say is your greatest joy in raising your your child?
SH: My greatest joy is when there is a breakthrough in Graham’s behavior. The first time he told me a joke, I almost cried. The time he was so upset and I knew, just knew, a meltdown was eminent, but he turned it around and calmed himself down. When he sees me eating something and asks what it is, and can he have a taste. When he apologizes to his sister for something before I have to tell him to. When he asks me how my day was when he returns from school. Such small things, but huge in our lives.
FF: What would you say has been the biggest help to you in raising your kids?
SH: My husband is my rock. He’s a professional firefighter and works 24 hour shifts, plus all the overtime he can get to help us out in this economy. I am able to stay home and make sure Graham gets all the therapies he needs. It means my husband may be gone for days in a row, but without him I wouldn’t be able to function. He’s the best husband and father I could have hoped for.
FF: Give us one tool you would hate to live without.
SH: My local support group. When Graham was diagnosed, we received very little information about what we could do outside of his IEP. Through my research I met two local mothers interested in starting a new support group for parents of kids with HFA, Asperger’s, and PDD-NOS. Our group is a year old and doing well. I get double the satisfaction from the group: the parents who have more experience can share their information with me, and I can help the new parents get through the beginning of their journey.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
SH: Educate yourself. Read everything you can on your child’s diagnosis. Find a local support group and go to the meetings. Network. Talk to other parents and see what their experiences have been. Only you can be your child’s advocate, so know the laws and what you can do for your child. And remember that no matter what the diagnosis, your child is the same person he’s always been, and you still love him. Now you can go out and fight for him, too.
Susie, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!
I wrote a little bit ago asking for your help. We were going camping for the first time, and I wanted help coming up with things for the boys to do – and anything else you could think of.
In short? It was GREAT. They were wonderful. There were NO issues at all. It was almost as if being dropped into this foreign environment brought out the best in them. My son that I thought would have the most issues is the oldest. So, we made a big deal out of the buddy system and his watching his younger brother. We gave them a lot more freedom than we normally do, as long as they were together. He took to it splendidly.
In fact, the campers next door – elderly “Get off my lawn!” types – came up to me afterward to compliment me on how well behaved my children were. “You just don’t find that with camping families anymore.”
So, thank you for the tips. We’re going back at the end of July with more information under our belts, and confidence in our kids’ abilities. Your help was invaluable.
We have a new Featured Parent to introduce you to! Kim is a parent to a kiddo with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids?
Kimberly Hersey: Kimberly Hersey, and my son is Kyle, 2 1/2 years old.
FF: What is the nature of their special needs?
KH: Down Syndrome.
FF: What would you say is your biggest challenge in raising a child with special needs?
KH: Acceptance that everything is going to happen but just not at the pace it might with a typical child. Also learning great patience!
FF: What would you say is your greatest joy in raising your your child?
KH: Kyle is a love bug and has a smile that would light up the world, and he gives the most incredible hugs.
FF: What would you say has been the biggest help to you in raising your kids?
KH: Networking with other parents who are dealing with similar circumstances and situations. There are so many different variations to Down Syndrome so it helps to have a wide variety of families out there to talk to and throw ideas around with. It’s also beneficial to know that when you are feeling overwhelmed, which does happen and is OKAY, that you have other families out there that have felt what your feeling and can help you through it.
FF: Give us one tool you would hate to live without.
KH: Anything Musical.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
KH: To know its okay to have questions and fears about the journey you are about to have with your child. One of my biggest set backs 2 years ago was that I was in denial and I never talked to anyone about it. I knew Kyle’s diagnosis when I was 5 months pregnant so I thought I was prepared. After we brought him home, after 6 weeks in the ICU at Childrens Hospital Boston, it was hard for me to talk about it. Not because I was ashamed but just because it was so foreign to me. I have never known anyone personally with Down Syndrome. I had no idea what to expect. It was hard because everyone including Doctors and Early Intervention kept talking about the things Kyle was NOT going to be able to do and I just wanted to love him because he was my baby. I never told anyone that I needed to just love him for a while before diving right into the technical side that comes with having a child with Special Needs. There is a lot that comes with this journey and sometimes I felt that I got lost in all the medical stuff and didn’t focus on just letting him be a baby. My best advice would be to do just that. Just love your child, hold your child, TREAT THEM AS ANY OTHER CHILD because honestly they are!
Kim, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!
It was really exciting to see the entries come in for our Wow! It Worked! Contest! Thanks to all for the inspiring ideas for ways to help create an inclusive school environment for kids of all abilities!
Heidi Douma, the Pre-K teacher at Sibley-Ocheyedan Elementary School in Sibley, Iowa was our big winner with her entry Pennies for Puzzles, which was a true example of a creative, community-building event that encouraged inclusive learning, with a positive impact on the self-esteem of all of her students
Sibley-Ocheyedan School has an ECSE classroom, a four-year old preschool, and a Headstart class. The ECSE students are integrated into the general education classes for part of the day, during a free-choice time, story, and centers.
Heidi’s Pre-K class was blessed this year to include a child with CP. Olivia not only taught her class how to think outside of the box, but she taught them a lot about their own character. In the classroom, students were encouraged to find ways to include Olivia in every activity they did. The teachers did their best to supply the students with the items they needed to implement their ideas for including her.
When Olivia couldn’t reach the water table, they gave her a switch-operated water-pick which allowed her to shoot water into the table (and sometimes squirt a few friends). When she wasn’t able to play musical chairs, she was made the “DJ” and given a switch to operate the tape player and control the music. Ideas just kept flowing and the kids loved the challenge of finding ways to include their friend.
For several years Heidi’s class has been holding an annual “Puzzlethon” to raise small amounts of money for different initiatives: flags/banners for the school, help for a child needing a kidney transplant, and a donation to a local hospital for a building project.
When Heidi told the kids in her class that Olivia’s family needed a wheelchair lift for their vehicle, they immediately decided to donate the proceeds of their Puzzlethon to Olivia. The children collected donations and pledges of a penny-per-puzzle-piece. Then on the day of the event, the children spent 3 hours putting puzzles together, keeping track of how many pieces each child contributed. By the end of the day, the kids had put together 5000 puzzle pieces and raised $3000! WOW!
Heidi’s Pennies for Puzzles story received 10 TIMES as many votes as the second place entry in our contest, and she is excited to receive her $250 shopping spree at Fun and Function!
Heidi says, “Since our district serves kids with all different kinds of needs, we are excited to use the money to purchase products that will address their different needs. It’s great to have products that can be used by the general education students as well as the special education students! It makes everyone feel included.”
She has already shared the good news with the students and parents from the class and plans to have Emily VanBeek, Fun & Function Consultant for Sibley-Ocheyedan Elementary School, do a display in the fall so that parents and students alike can help with deciding which products would best suit the class.
Fun and Function congratulates Heidi on her winning entry, but more importantly acknowledges the great work she is doing to build an environment that values and includes all children, regardless of their abilities. Way to go, Heidi!
Sensory Integration
We have a new Featured Parent to introduce you to! Cindy is a parent to kids with special needs and graciously answered a few questions.
We have a new Featured Parent to introduce you to! Vera is a parent to kids with special needs and graciously answered a few questions.
We have a new Featured Parent to introduce you to! Susie is a parent to a kiddo with special needs and graciously answered a few questions.
We have a new Featured Parent to introduce you to! Kim is a parent to a kiddo with special needs and graciously answered a few questions.
It was really exciting to see the entries come in for our 
