What I Know Now - 3 Lessons from a Special Needs Parent

Credit:  Microsoft
As parents of children with special needs, we learn a great deal as we fight to get our children the medical care, therapies and educational supports they need.  Today I want to share three important lessons I have learned in this journey.


Trust your instincts

Many parents of children with special needs receive dismissive comments when they express concerns about their children. They are told by friends, relatives, medical providers and/or teachers that their child is fine, he will grow out of it, she is just immature for her age, you are overprotective, you're exaggerating things, etc. These comments are well-intentioned, but can make us parents doubt our perceptions about our children.

You know your child better than anyone else.  Unlike well-meaning friends and relatives, you see your child in many physical environments and situations. If you have a concern about your child's development, you must do everything you can to make sure your concerns are properly addressed.



Question authority

Credit:  Ludwigs2 on Wikimedia Commons
Doctors and other clinicians make mistakes.  If you don't agree with a particular diagnosis or lack thereof, ask questions. You don't want to start an argument, but you do want to find out the basis for the decision. So, start with two basic questions:


  • Please explain in detail why this diagnosis was/wasn't made?
  • What tests did you perform and what were the results?


When you get this information, it is research time.  You want to learn the criteria for that diagnosis to be made.  In addition, you want  information on the tests that were performed and their accuracy.  After you find and review this information, decide whether you need to set up a meeting with your child's clinician to discuss the diagnosis.


Network with other parents

Other parents of children with special needs are a tremendous resource and most are willing to share what they know.


Credit:  Microsoft

Some of the things other parents can help with are:

  • Accommodations for homework that work for their children
  • Explaining the IEP process at your child's school
  • Information on teachers and teaching assistants
  • Referrals to therapists and medical providers
  • Tips for transitioning to a new school
  • Helpful books and websites
  • Places to find sensory friendly clothing
  • Names of camps and clubs that have activities for children with special needs
  • Accommodations for testing


Even if other parents' children have different diagnoses than your child, you will encounter similar issues and problems. Get to know other parents by going to parents association meetings, plays, sporting events and other school activities. 


©Mary M Conneely T/A Advocacy in Action

Autism Tips from Temple Grandin

Credit: Steve Jurvetson on Flickr
Autism advocate Temple Grandin was in Iowa recently to speak at a conference on autism. Grandin gave parents of children with autism the following tips:


  • Devote lots of time and energy building up the skills your children need to succeed in life
  • Get your children involved in social activities that match their interests so they are out in the real world learning to deal with real world challenges
  • Don't let computers and video games become a "crutch" - she recommends less time playing and more time engaging in activities that build up their social and communication skills
  • Exercise is important
  • Help older children get jobs and/or give them responsibility for certain tasks
  • Don't make excuses for your children's behavior - help to correct it
  • Remember to look past children's difficulties and work on building up their strengths


Grandin also talked about medication and therapy. Because autism affects children differently, Grandin advises parents that they may need to try many different therapies to find the one(s) that works best for their children. Grandin acknowledged that some medications are helpful, but stated that high doses of medication to correct mild behavior problems are not acceptable.

More information about Temple Grandin is available on her website.


Sources:

Temple Grandin to appear at Iowa autism conference

Temple Grandin offers frank advice at autism conference




Autism, ADHD & Sleep

Credit:  Katrina Br*?#*!@ndnd on Flickr
Not enough sleep affects behavior in children with autism and ADHD, according to research from Louisiana State University Health ShreveportChildren with insufficient sleep have problems concentrating, focusing, paying attention and with their memory.  In addition, not enough sleep increases behavior problems in children.  The symptoms of chronic sleep deprivation can even mimic ADHD.

Dr Michelle Yetman is studying the effects of sleep on these disorders"71 percent of children referred to our clinic don't meet the national guidelines for adequate amount of sleep," said Dr Michelle Yetman. "If you're not getting enough sleep, you can't focus and attend during the day. Your attention will drift in and out during the day," said Yetman.

Yetman advises parents to:
  • remove TVs, laptops and other electronic devices from bedrooms
  • set regular bedtimes
  • know the amount of sleep their children need

The National Sleep Foundation provides this guideline of sleep requirements based on age: 

- Infants (14-15 hours) 

- Toddlers (12-14 hours)

- Preschoolers (11-13 hours) 

- School-age children (10-11 hours)

- Teens (8.5-9.5 hours) 

- Adults (7-9 hours)

More tips on good sleep practices are available from the National Sleep Foundation and Sleep for Kids.

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©Mary M Conneely T/A Advocacy in Action

Prader-Willi Syndrome Annual Conference in Dublin

On 17 September 2014 PWSAI will welcome world-renowned speakers on PWS from the US, the UK, Germany, Denmark and Australia as well as Ireland for its 2014 conference. The programme will feature presentations that focus specifically on Prader-Willi Syndrome in adults, presentations that focus specifically on Prader-Willi Syndrome in children, and presentations that will be of relevance to both groups. The topics covered include residential care provision, health issues, physical therapy, genetics, and advances in PWS research.
All of the international speakers who will present at this conference are affiliated with the International Prader-Willi Syndrome Organisation (IPWSO) and PWSAI is very grateful for IPWSO’s support in organising this event. PWSAI is also very grateful to the organisers of the Galway Cycle 2014 and to the Hospital Saturday Fund for the generous financial support they have provided for this conference.
  • All intended delegates are requested to refer here for important information about the conference
  • Biographical notes about the speakers can be found here
Advance payment and registration for this conference are essential – it will not be possible to register and pay on the day.
Due to generous sponsorship from the Galway Cycle 2014 and the Hospital Saturday Fund the conference fee is only €15 per person, which includes lunch and other refreshments.
Registration is now OPEN. To register, click here (links to iregister.ie)

QUERIES

For queries, contact Ann Grassick on (087) 9354914 or info@pwsai.ie
The conferences is being held in Bewleys Hotel, Dublin.




©Mary M Conneely T/A Advocacy in Action

Solutions to four sensory clothing problems

Dressing children with special needs is challenging for many parents. Tags, seams and fabric textures can irritate children with sensory issues. In addition, children with poor motor skills have difficulty with buttons, laces, and zippers.

Some mainstream products, such as tee shirts, are now manufactured with sensory issues in mind. It still however takes a lot of searching to find products that will work for your children’s issues. Here are a few items I found that might be helpful.

(No Netz website)

Comfortable Swimwear for Boys
The majority of bathing suits for teenage boys have a mesh lining. This lining aggravates kids with sensory issues. I found a company online that makes swimwear for boys and men without this lining. The company, No Netz, describes its product as “anti-chafe swimwear.” The boys' swimming trunks are $40 and men's trunks are $55. The company ships internationally.




Socks
One of the most common problems among kids with sensory issues is socks. Toe seams and elastic tops make wearing socks unbearable for some children.  Smart Knit Kids makes seamless socks in a range of colours and styles. The socks are available in toddler through adult sizes. They are priced from about $6.95 to $9.95. The socks are available internationally through various retailers.



(Smart Knit Kids website)


Belts
(Myself Belts website)
Belts can be a nightmare for parents of children with special needs. Myself Belts is a belt system created by a mom. The belts use Velcro so they are easy to fasten. They come in a variety of colours and patterns. The belts are priced between 16.95 and 18.95. Myself belts also have leather belts in teen sizes that are priced at $28.95.  This is a US based company, but they do ship internationally.



Shoe Laces

When children can't tie their shoelaces it limits the type of shoes parents can shop for.  In addition, trying to teach kids to tie their laces can be stressful.   Now, old laces can be replaced by new lacing systems.  These new systems do not need to be tied.
(Hickies' facebook page)

One system is Hickies. It "is an elastic lacing system that replaces traditional shoelaces and lets you easily slip in and out of your shoes while keeping them snug and secure." Hickies are priced around $14.99 and the company does ship internationally. 

If you have come across any helpful products please share in the comments below.

All prices referenced are in US dollars.


Disclosure: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned.


©Mary M Conneely T/A Advocacy in Action

Help your children with special needs improve their foreign language skills for free!


DUOLINGO

Children often find mastering a foreign language challenging. For many children with special needs, this task is daunting. Duolingo is a free app that helps your children review and practice their foreign language skills in a fun way.

   
You and your children can use Duolingo to brush up on your foreign language skills or even to learn a new language. Through this app you can learn  English, Spanish, French, German, Italian and/or Portuguese. The lessons cover grammar, listening skills, and speaking. The lessons are great for kids as they are short and they get immediate feedback on their progress. You can use the app with the website.



After studying French for many years, and forgetting most of it, I decided to try Duolingo.  I am using the app on a Google Nexus 7.  The app works quickly and has nice graphics. More importantly it is fun!

Duolingo divides each language program into units that include several lessons.  You progress through each lesson by answering questions correctly before you run out of hearts. If you run out of hearts, you have to repeat that lesson.


There are a variety of question types within each lesson. In some questions, you listen to an audio clip in French and then type in the English translation.




Other questions ask you to speak a phrase in French into your device's microphone.


There are also multiple choice questions in which you select the correct phrase or translation.




If you have good language skills, Duolingo lets you skip lessons if you pass tests. 

Duolingo is available for iOS and android. This app is completely free and there are no in-app purchases or advertisements!!!


This app is fun to use and engaging.  Because Duolingo is visual, divided into short sections and gives users instant feedback, it would appeal to most kids including those with special needs.




Disclosure: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned.



©Mary M Conneely T/A Advocacy in Action
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