Archive for the ‘ Children With Special Needs ’ Category

Prompting Conversation And Communication With An Autistic Child

Thursday, August 28th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

My son, Norrin, has been working with a speech therapist for the last six years – ever since his autism diagnosis. At the time he was diagnosed, he had no language or communication skills. Recently, Norrin saw a picture of me that prompted him to ask me 5 appropriate questions in a row. I was beyond excited! Since then, I’ve been finding ways to build on his conversation skills.

Linda M. Reinert, speech language pathologist and author of Talking Is Hard for Me! Encouraging Communication in Children with Speech-Language Difficulties, encourages parents, teachers and caregivers to “expect communication.”

Tempting as it might be, stop trying to read the child’s mind. Consider what the next level of communication might be and expect that…expect the child to respond in a way that just a bit more difficult than [his or] her current means of communication.

I always try to keep that in mind when I talk to Norrin. He’s been much more expressive and so now I expect a little more each time we talk.

Here are my 6 simple rules for prompting conversation with my son:

Set the mood. Make sure your child is relaxed and ready to talk. Turn off all distractions so they can focus on you. And give yourself at least 10 – 15 minutes to commit to giving them your full attention. Go for a walk in the neighborhood and talk about what you see. Sit at the table while they are having an afternoon snack. I like talking to Norrin right before bed. He’s had his bath, he’s winding down and open to talking.

Keep it simple and specific. Don’t go into a whole monologue and/or fire off a bunch of questions. Use simple language and ask them one specific question at a time.

Follow up. Conversations are all about the follow up question. Build your conversation based on the answers your child provides.

Be patient and wait for response. Some kids need a few minutes to digest the question and think about the answer. So wait a minute or two.

Repeat and/or rephrase the question. If you’ve asked a question and too much time has passed. Ask again. If you have to ask a third time, rephrase the question. If they need help, provide two choices or use pictures and have them point.

Look for inspiration. There is inspiration everywhere. Show them a picture of something fun you did together and ask your child about it. Sometimes I’ll point out something as we’re walking around the neighborhood and ask him to tell me about the specific object.

It really doesn’t matter what you talk to your child about. The important thing is to take the time to talk to your child and get them into a back and forth dialogue. And with each conversation, always expect a little bit more.

And from my other blog:

Understanding Autism: Developing Social Skills
Understanding Autism: Developing Social Skills
Understanding Autism: Developing Social Skills

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Daycare For Kids With Special Needs: Yes, Please

Tuesday, August 26th, 2014

Among the many things I wished for when Max was little: a daycare that specialized in kids with special needs. We had a regular sitter, but when she was on vacation or called in sick, leaving Max at a regular daycare was stressful. Sometimes, my husband and I ended up taking off days from work.

I was so thrilled to read about A Place For Grace in Saginaw, Michigan, a daycare center for kids with special needs that opens September 2. Its founder: a mother of a child with special needs. As Jenny Dumont recalls of her struggles finding daycare for her daughter Emma Grace, now 9, who has intellectual disability, “She was having meltdowns four times in one week and I got called in to pick her up and when I got in the caregiver was doing the best she knew how. I got really frustrated and thought, Why isn’t there a place for children like Emma?”

Jenny Dumont and daughter Emma Grace

A Place For Grace has teachers trained in special education, along with a sensory room and toys  for kids with special needs. It will ofter preschool for children ages 3, 4 and 5 (who missed the school cut-off) and aftercare for kids ages 5 to 16. The goal is to offer full-day childcare for school breaks and special days by Summer 2015, including therapies in accordance with children’s IEPs.

If you Google “special needs daycare center” in your area or state, some might crop up—key word being “might.”  This country is sadly lacking in daycare options for children with special needs. It’s astounding, though not surprising, that this one was started by a parent of a kid with special needs. Parents like us often have more than our hands full and yet, we best know just how needed services like this are.

Also see Parent.com’s Day Care and Babies With Special Needs

 

From my other blog:

On letting your child with special needs do things for himself 

My kid with special needs understands you so don’t ask me, ask him

That sad you feel when you think about your pregnancy

 

Image source: Screen grab of center, WNEM video; Emma Grace and Jenny via GoFundMe

 

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From Special Education Teacher to Autism Mom Blogger

Wednesday, August 20th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

When Norrin was first diagnosed with autism, I didn’t know anything about the diagnosis or navigating the special needs system. I was able to talk to friend of a friend who was a speech therapist. She provided the emotional support I needed and helped me better understand the process. A few years later, her son was diagnosed with autism. She called me up crying and I gave her the support she needed.

Being a special education professional doesn’t always make the diagnosis easier to accept or understand.

No one knows that better than Mama Fry who writes the blog Autism with a Side of Fries.Written with honesty and humor, Mama Fry doesn’t pretend she knows all the answers – even though she once worked in special education. She even wrote a post about her experience sitting on the other side of the IEP table.

Earlier this month, I got to ask Mama Fry a few questions:

What did you know/think about autism when you were a special education teacher?

Not nearly enough. I haven’t been in a classroom for about 9 years now and much has changed. Back then it was more about getting kids to be all the same or “normal” rather than celebrating and tapping into their skill sets.

How did you advise autism/special needs parents?

My area was vocational training. I was thinking past school. Getting them ready for what real life job situations might happen. Most of my conversations with parents then was problem solving behaviors or trying to figure out accommodations that would suit their kid best.

What was it like when your son was diagnosed?

Surreal. It absolutely never occurred to me that he might have autism. I thought it was a speech delay and that’s it.  I was truly gobsmacked. I had recently stopped working outside the home because working with autism was burning me out. Surprise! It came to live with me instead.

How have you changed since? 

I understand how each kid is just so different. My son is not just a name on a page to me. He’s my heart.  I can’t punch out at the end of a shift. Behaviors are communication not just non compliance.

What advice would you give to special ed teachers who don’t have special needs kids?

Ask about what’s going on at home. Sleep is a huge factor. Eating too. Realize the student you have, their behaviors could be based on those two things a lot.  Ask what concerns the parents the most. Share what’s working in class.

Catch up with my last post: A Little Girl Gets a Second Chance at Childhood

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

And from my other blog:

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This Girl Will Stop People From Aborting Babies With Down Syndrome

Tuesday, July 22nd, 2014

No matter whether you are pro-life or pro-choice, it seems like there’s one thing to be agreed upon: Parents-to-be who find out their baby in utero will have Down syndrome deserve access to solid information and support.

Thanks to Chloe Kondrich, 11, and her father, Kurt, that’s going to happen in Pennsylvania. The two are behind new legislation known as Chloe’s Law that requires health care experts to provide women who get a prenatal diagnosis of Down syndrome with factual and supportive information from the Pennsylvania Department of Health.

A former policeman, Kurt Kondrich has been a dedicated advocate since Chloe’s birth in 2003, when he and his wife learned that she had DS. He went on to get a masters degree in Early Intervention, and now works full-time on the Interagency Coordinating Council for Early Intervention. Chloe, meanwhile, is quite the media star—her dad notes that she’s been in magazines, books and newspapers, and regularly mingles with politicians.

Between 60 to 90 percent of women who receive a prenatal Down syndrome diagnosis end the preganncy, according to a 2012 meta-analysis of 24 studies in the journal Prenatal Diagnosis. The evidence suggests that termination rates have actually decreased in recent years. It makes sense that worried parents who get support may be less likely to abort a baby with Down syndrome.

Chloe, who attends Boyce Middle School in Pittsburgh, reads at the same level of her sixth-grade peers. She stood with Governor Tom Corbett as he signed Chloe’s Law. As State Rep. Jim Marshall (R), the prime sponsor for the act, said, “We hope this will raise awareness to parents who may get the diagnosis and be initially afraid of what the result will be. I think it will raise awareness that their kid is going to be different, not imperfect. There really isn’t anything more perfect than a happy child.”

From my other blog:

8 ways to include kids with special needs in programs, events, classes, camps, wherever

Let It Go, like you’ve never heard it sung

The shocking realities of raising children with disabilities, and why society needs to know

Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?

Image: Kurt Kondrich

 

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A Little Girl Gets A Second Chance At Childhood

Wednesday, July 16th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Kinsey Saleh was like any other feisty 5-year old girl who liked playing with her friends after school and eating ice cream. However, Kinsey’s mother, Nadine Morsi, said she knew “something was wrong” when Kinsey started experiencing shortness of breath, fatigue, decreased energy and unexplained bruising. When Kinsey complained of joint pain in her knees, Morsi insisted on a blood test. Both the doctor and Morsi were shocked when the test revealed Kinsey had developed a rare case of end-stage kidney failure. Kinsey’s condition was so critical, doctors feared the 5 year-old would suffer from a stroke or go into cardiac arrest.

Instead of playdates and ice cream, Kinsey’s childhood afternoons consisted of doctor’s appointments and dialysis. Kinsey needed a kidney transplant and was put on a waiting list. Kinsey’s mother, while a perfect match, was unable to donate due to congenital clotting disorder that made surgery risky. “I felt helpless,” Morsi said.

“I became a special needs mom overnight,” Morsi said. As a pediatric occupational therapist for the New York City Department of Education, Morsi was aware of the assistance her child could receive. Kinsey was able to attend school with the assistance of a full-time health paraprofessional.

Morsi admitted to wanting to keep Kinsey’s diagnosis a secret. But a close friend insisted Morsi share their desperate search for a kidney donor. Kinsey’s story was shared throughout Facebook and she quickly captured the attention of local media.

Morsi has used her experience to raise awareness and help others. Every day 13 people die waiting for a kidney. “We can all live on one kidney…please share your spare if you can,” Morsi urges.

Last month, nearly six months after her diagnosis, Kinsey received a kidney transplant. She is doing well and is gearing up for the 1st grade in September (without any special assistance). Kinsey can spend the remainder of the summer with outings to the park and the sweet promise of ice cream. Morsi is extremely grateful that her daughter has been given a second chance at a normal childhood. She recently shared: Every single day is truly a gift. Not a day goes by that Kinsey’s donor is not in our hearts for allowing her to be a kid again.

Keep up with Kinsey and her mom via Facebook - Kidney for Kinsey.

 

Catch up with my last post: How Not To Handle a Public Meltdown

And from my other blog:

Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor

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