Resources for Special-Needs Children
by Ellen C. Braun
Filed under Child Development
There have been a lot of comments and questions from parents of special needs children recently.
Honestly, as RaisingSmallSouls is a personal website that I have developed about a subject I am passionate about- raising emotionally healthy children- I am not qualified to begin to answer some of the questions regarding special needs children.
Many parents have brought up autism, ADD, ADHD, Asperger’s Syndrome, to name a few.
Please help us guide parents by posting links to websites or support forums that have helped you!
Post the link, a description, and what YOU have found to be helpful on that site!
Thanks!
Ellen
[UPDATE] There’s a large list of learning disability resources for parents located on GuideToOnlineSchools.com. The resources are divided into categories so you can quickly find what you’re looking for. Whether you’re in search of self-help information, non-profit organizations to assist you and your child or even looking for quality Online Schools be sure to check out this site.
No related posts.
I’m sorry, the agency is Mosaic and their website is: http://www.mosaicinfo.org
The link: http://www.hsmjs.org/products.htm is my school cooperations’s website that is full of links, videos, pictures, and great resources for parents or individuals interested in the topic of Autism. It covers a vast amount of information. I hope it proves to be useful.
These website and magazine are a wealth of knowledge for anybody involved in the wacky world of ADD.
I must be having an ADD moment. The website is additude.com Sorry about that!
Thanks so much to all who voiced helpful opinions, I am looking forward to trying some of these new-to-me websites soon…
There are many books on the subject(s) of Special Needs children, however, these were of particular help to our family and have their associated websites…
1. It’s So Much Work to Be Your Friend, by Richard Lavoie
2. The Explosive Child, by Dr.Ross W. Greene
3. Bipolar-The Elements of Bipolar Disorder by Dr. Jay Carter
“We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us.” Joseph Campbell
It looks like you have covered about every website that I have been too,plus I have found several more to check out. However, I have a book that I am reading is “Breakthrough Parenting for Children with Special Needs Raising The Bar of Expectations” By Judy Winters. I have just started it, but this seems to be a great book.
The other thing that I can recommend is getting your kids involved with special olympics. I did this for my daughter a year ago. I am just thrilled with the changes in her. It has been such a positive setting for her. So if anyone has kids with cognitive impairments I would highly recommend this too. I also recommend parents getting involved, either chaperoning or coaching. I have been coaching since our 2nd sport she joined, it has been just as important to my growth dealing with her diagnososes as it has been for her socially.
Personal Ponies Ltd provides a small UK shetland pony for children that are differently able. Ponies are available to visit throughout the country or are available to live with you and your child.
This website is for Relationship Development Intervention. It has a lot of information for parents of children with autism or asperger’s. It is a specific type of intervention, but there are also a lot of resources and information about what autism is.
This site is for families raising children with FASD. I have found the site very informative. They also have a support group which I belong to and I love. It is so wonderful to be able to talk with people who are in the same situation as you and can understand.
I’m an educator and have done some testing on Irlen Syndrome and Scotopic Sensitivity Syndrome. If your child plays up in class or refuses to read – even on on the computer – you might find my results interesting. http://eaholliday.squarespace.com/
http://www.tell-us-your-story.com/
I dare you to read the stuff on this site and not have your eyes opened.
National Dissemination
Center for Children
with Disabilities:
http://www.nichcy.org/index.html
(Exellent source for basic information!)
On pdd-nos:
http://www.nichcy.org/pubs/factshe/fs20txt.htm
Aticle on my particular disability.
I have an online autism information and support group – we have members from around the world, and share and discuss autism issues on a daily basis.
http://groups.msn.com/AutismSpectrumDisorderSupport
I have a daughter who was initially dx with severe sensory integration dysfunction at 2 and then with autism at 3. She is now almost 7 and in a mainstream 1st grade class with an aide and doing very well!
I need help…
Does anyone have experience with a child at 4 1/2 that seems to have a flip flop personality? One second they’re sweet as pie the next they shake with anger at the least little thing going into a rage, then somehow suddenly back to being that sweet little child again. Potty training is ongoing, though we seem to have breakthroughs that don’t last. The doctor say she is in good health and to work with her on potty training. I haven’t made my concerns known thinking I can handle this. Now I’m not so sure. She can’t join any groups like AWANA’s or art class unless I’m right there but then that seems to discourage independence. I homeschool her and her 9 year old sister. Am I just over-reacting to something she’ll grow out of or should I take her to a child psychologist?
Hi Donna;
I don’t know for SURE of course, but the two things that come to mind instantly are Bi Polar Disorder or Sensory Processing Disorder.
Look them both up on the web to get more info and see what you think.
I have lots of experience with Sensory stuff because my son was diagnosed with it at age 3. We had nightmares with potty training too. It took until AFTER age 4!!
I have a blog that you can get info on our journey and tonnes of resources about S.P.D. if you are interested.
Check out http://www.hypersensitivekids.blogspot.com
I don’t have as MUCH experience with Bi Polar but I have 4 adult friends with it and have read about it and it is characterized by severe mood swings.
Best of luck! Feel free to email if you want.
Monika (lifeontherun@gmail.com)
Donna:
My son was kind of like this. He’s 11 now and doing well. I too thought I should take him to a psychologist. However, I found that his problem was a language delay. He was diagnosed with Receptive and Expressive Language Delay and has been in speech therapy since the age of 4. Belive it or not, this delay can cause horrible outbursts because of the frustration the child feels over not being able to understand or be understood. If you’re interested in finding out more, email me at: ekcfrench@comcast.net. By the way, I homeschool also.
I’m a child clinical psychologist, family advocate and mom to a child with special needs. I recommend these:
http://www.wrightslaw.com for info on IDEA and 504 issues
http://www.spdnetwork.org on sensory processing disorder
http://www.beachcenter.org to find parent to parent support in your community and the latest research on disability issues
http://www.thearc.org for the ARC of the United States for parent advocacy support – local chapters exist in every state
http://www.ldonline.com schwablearning.org has been mentioned by several other posts – LDonline is another fabulous learning disabilities resource
http://www.ndline.com for Nonverbal Learning Disability
take care, Susan
My daughter has Down syndrome, and my favorite online support community is:
http://www.network54.com/Forum/244888/
As well as Dr. Len Leshin’s site:
http://www.ds-health.com/ds_sites.htm
I am the proud mother to the Amazing Brant who is 3 1/2 years old and has Down syndrome.
One great site that I LOVE for any person with a disability is http://www.disabilityisnatural.com/ It gives very positive inclusion information as well as some wonderful info on “People First Wording” which values the person before their disability(instead of saying “Special Needs Children” you say “Children with Special Needs”, instead of “Down syndrome person” you say “Person who has Down syndrome”)
As for information specific to Down syndrome I really like these sites:
http://www.trisomy21online.com
http://www.cdss.ca
http://www.dsrf.org
http://www.ds-health.com
And for children with delays in learning to speak and the parents would like to use Sign Language as a communication tool I HIGHLY recommend the DVD’s from http://www.signingtime.com … makes learning sign language so easy for kids and parents! Our son knows over 200 signs from this series alone.
Katrina
I have found http://www.kidfoundation.org very helpful for my child with sensory disorder it has links to several links as well. I also recommend the book “1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders.” by Ellen Notbohm and Veronica Zysk. I also recommend the book Sensational Kids.
A wonderful support “family” for parents of children with Down syndrome. Once there you can find links to many of our favorite sites.
Although this website is called Tourette Syndrome, it has great information on a variety of other special needs such as Asperger’s, Executive Functioning disorder, non-verbal learning disorder, ADHD and more. It is highly recommended by a neuropsychologist who works with several children from the school where I teach and is a very valuable resource. It also lists other websites that might be of help.
a few years ago (when i was struggling with my autistic son’s bowel issues) i found this website. having posted a message with my concerns about his “leaky gut” (which led to a variety of nutrient deficiencies), i received advice on the GFCF diet.
well, i decided to inquire further about this diet and asked for names of GFCF foods and what stores they could be found in… the response that i got was overwhelming as hundreds of e-mails with information showed up… which made it possible for me to break down the list into the four basic food groups and begin following this diet with the assistance of a dietician. much thanks and gratitude is owed to everyone on that website who helped because my son’s issues have improved drastically.
http://www.NAMI.org
http://www.CHADD.org
Two helpful and informative websites for those interested or concerned with mental illness (mood and brain disorders) and ADD/ADHD.
I am the mother of three special needs children. Two of my children are deaf and use a cochlear implant to hear. Any questions about hearing loss, scholarships for children with deafness or deafness in general. Check out http://www.agbell.org or http://www.oraldeaf.org. My middle child has epilepsy and is speech/language delayed. A good website for children with epilepsy is http://www.paceusa.org. Also let me stress the importance of sign language, when it is difficult to communicate with your child. I used it with all three of my children and it has helped them connect to spoken language. If you would like information about sign language, please visit http://www.handspeak.com. It is a wonderful website that can teach baby sign for those who just wish to communicate with their child, or you could teach yourself American sign language (ASL). Hope this helps!!
I have 2 yr old who has Sensory Processing Disorder.
and this site and http://www.kidfoundation.org/index.html
has been really helpful to me
Schwab Learning is a wonderful site for parents and kids with learning disabilities or developmental disabilities, including ADHD. http://www.sparktop.org is their site for kids with disabilities and it’s wonderful too!
For learning more about Nonverbal Learning Disabilities, this website has been very helpful. It has articles for parents and educators at various levels of complexity.
http://www.nldontheweb.org/ is the original website – thought it would come up in the post automatically – sorry about that!
http://www.schwablearning.org is the master site for http://www.sparktop.org mentioned above.
For Tourette’s Syndrome and MUCH MORE…
I’m delighted to see Valerie (#161 above) has discovered this site as well:
http://www.tourettesyndrome.net/
I have found this to be one of the most useful sites related to Tourette’s but also EXECUTIVE DYSFUNCTION, ADD/ADHD and more.
I also recommend http://www.tsa-usa.org/
For Tourette’s families and educators I highly recommend the DVD “I Have Tourette’s but Tourette’s Doesn’t Have Me.” This film helped my son’s Special Ed team and others to understand the syndrome, dispel the myths and see him as a child, not a label.
TIP FOR EVERYONE:
Get an email address at gmail and there you can have Google send “web alerts” for news items related to any topic you choose. I am able to keep up on the latest news regarding Tourette’s or medications that our family uses (since those are constantly being re-evaluated).
The following essay is widely published on the Internet and is very relevant to raising children with disabilities. It really moved me…
- Mom of Kyla, age 9 – ADD and possibly nonverbal learning disorder (? we’re still trying to isolate what her difficulties are), and Jack age 5 – sensory processing disorder
A Trip To Holland
By Emily Perl Kingsley
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 guidebooks and make your wonderful plans… the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. The loss of that dream is a 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.
I am the mother of a two year old son with autism. While there certainly are a number of resources for special needs kids available, there can never be too many. That is why I have started a non-profit organization, Find a Way Foundation, to bring more resources to my own community in Northern California.
The foundation is just starting out, but you can read about our plans at:
http://www.antiochpress.com/article.cfm?articleID=1663
and:
http://findarticles.com/p/articles/mi_km4465/is_200608/ai_n16683519
I would love to hear from other parents what they would find most helpful in their communities—from therapies to advocacy to social interaction opportunities and more. Please feel free to email me at steffanylohn@findawayfoundation.org
Thank you for your input!
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I have found http://www.babycenter.com website to be a lifesaver for me(parents of autistic children board can be found by going to bulletin boards, then parenting children 1-8 yrs. old, from there going to the development section). For specialty items, I have ordered many things from workbooks to CD’s from http://www.superduperinc.com (free shipping too). Both have been invaluable to me.