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Blog with resources to understand speech and language issues. Excellent resource for parents if they suspect their child may need speech and language services, as well as information for children that receive SLP services.

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Speech Buddies Blog: Speech, Language & Pronunciation Guides

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Children’s Speech & Communication: Advice for Parents & Professionals - Speech Buddies Blog: Speech, Language & Pronunciation Guides

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Exploring the complex world of speech and language development in children. Guidance for your child and tips on what to do if you suspect a problem.

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Children’s Speech & Communication: Advice for Parents & Professionals

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Website with a plethora of articles aimed to provide a basic overview of various disabilities.

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Comprehensive website that provides detailed information regarding special education law. There is also issues of Special Ed Advocate that answers questions parents may have regarding the IEP process.

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individuals with disabilities education act. free appropriate public education

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Wrightslaw is the leading website about special education law and advocacy, offering free access to thousands of articles, cases, resources about special education topics, books by Peter Wright and Pamela Wright, and special education law and advocacy training.

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Blog of a parent raising a child that is deaf. This blog provides resources for parents, as well as a personal account of experiences with raising a child that is deaf.

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By Heather Withrow
Last edited 9/14/2018
The following is something I've developed over time when asked about resources for parents of deafblind children. It's a working piece that has been edited several times.

Orion's degree of deafblindness is rare among deafblind children- he is profoundly deaf and does not have any usable vision. He has a little light perception in parts of only his right eye. Your child may have some vision, or a different level of deafness. This list is from the perspective of a mom of a totally deafblind child:

First thing to do

Well, not the actual first thing which is kissing, hugging, and bonding with your child, but the first thing after that:

The #1 thing parents need to do to get support, information and resources for their child is contact their state DeafBlind project (office). I got in touch with the awesome people at Maryland's CBSS (Connections Beyond Sight and Sound) for resources and support for Orion.

Early Intervention

Each county in the USA has early intervention available, it may also be called an Infants-Toddler Program. Your child's pediatrician should be talking to you about this and giving you contact information. If not, you can Google it, contact them and get the intake application process started. Your state Department of Education and state DeafBlind project would have this information, too.

Don't wait until your child is at an age you think is old enough for therapy. Get him/her evaluated and they can tell you. Even 3-month-olds are not too young for early intervention.

I tried to get county early intervention ready before Orion was born and I was told to wait. Luckily staff from Maryland's Deafblind project was happy to meet with me anyway. Sure enough, around 2 weeks after the enlightening and inspiring meeting, Orion was born!

Like the state Deafblind projects, early intervention can help keep an eye out for workshops you could take to learn a little bit about resources or strategies for your child. Luckily our kids don't roar through their childhood overnight so there is time to do a little here and there as our kids grow up with us.

Online DeafBlind Resources

I have a list of favorite online resources to the right on this blog titled "Links of Interest". But here are three of the places I discovered during Orion's early days.

This website is loaded with information on DeafBlind people from birth to 22 years old. DeafBlind Child Count, state DeafBlind project contact information, articles on topics including communication strategies, educational supports, interveners, etc. The NCDB is federally-funded.

I love watching online videos, so it's delight when they're available on the topic of Deafblind kids. Two I suggest checking out are:

Washington Sensory Disabilities Services (WSDS) has online resources for teachers and families of DB kids ( http://www.wsdsonline.org/ ). Plenty of videos to check out! Some text may also be available in Spanish.

I started visiting Perkins Webcasts before Orion was born (when I realized he might be deaf, too): http://www.perkins.org/resources/webcasts/deafblindness-or-visual.html I truly appreciated these webcasts and still am hungry for more on the topic of Deafblind children by the way of Perkins.

Parent to Parent Connections

There's something reassuring about sharing your experiences with another parent and getting that knowing nod of agreement!

Look for (or ask that there be) a gathering of families who have a deafbind child or adult in your state or province. Those are wonderful! A couple examples: Texas has a weekend workshop retreat for families at a gorgeous camp; British Columbia has regular family-meeting opportunities every month in the Vancouver, BC area. As simple as a day or afternoon of activities and a BBQ would be good. I would consider two families meeting up a great start!

And there's blogs! You can browse my blog, "A Mom's Musings", here at www.OrionTheKid.com as well as look over to the right and find the sidebar of links to the blogs I enjoy visiting. Most of them have to do with deafblind children, people, and activity ideas.

Communication

Visit my page dedicated to Deliberate efforts for communication should start the day your deafblind child is born.
Hearing babies are spoken to, Deaf/HH babies are signed to. Children of Deaf Adults are signed to regardless of how their ears function. You don't have to have an extensive knowledge of sign language to tell your baby you love him. Give him hugs, kisses, hum on his neck, caress his cheek. Start with a few signs, perhaps ten signs of the most common words you find yourself using.
communication.

I've been asked about cochlear implants, too. CIs may or may not work for deafblind kids because some kids' inner ear may be differently developed that it won't work, thus no surgery will take place. There's no guarantee of a desired hearing level. Even if they respond to sounds at 20 to 25dB like Orion used to do with his CIs on, they're still listening through a "broken system". Orion has not worn his processors since he was 34 months old.

If you think about it, early deafblind sensation Helen Keller, who had an extraordinary personality herself, did not have listening aids back in her childhood. (I say early deafblind because there are so many living deafblind sensations among us today!)

Playing games with your child is one of the most important things you could do for your child every day. It is fun, the both of you will laugh and simple games is great brain exercise for your child. Not only that, it is developmentally beneficial to for our children to become curious, motivated and to interact with people, objects and surroundings. I have heard an Active Learning workshop presenter tell us all that a kid's job from birth to 5 years old is to PLAY! I would like amend that we put no age limit on playing because once the developmental benefits are being met, there's still the social and emotional benefits to enjoy!

For example, if your child enjoys tickling you can start at his toes, crawl your fingers up to the knees... then the hips... slowly creep up to the chest and tickle your baby. This develops anticipation and prediction skills of what's going to happen next based on prior experiences.

After the most famous five senses, there are two more that are not as well-known. They are the
vestibular and proprioception systems. David Brown wrote a wonderful article on Proprioception: The Forgotten Sense. When I learned more about the proprioceptive sense, it dawned upon me why playing robustly with Orion truly benefitted him.

Take it one day at a time (I'm still telling myself this!)

It may be a lot of information processing and questions storming around in your mind and conversations but parents deserve to take time for themselves. Just like a child grows with you, the information will, too. What I know today is from my years raising Orion. I'm still learning!

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By Heather Withrow Last edited 9/14/2018 The following is something I've developed over time when asked about resources for parents of deafblind children. It's a working piece that has been edited several times. Orion's degree of deafblindness is rare among deafblind children- he is profoundly deaf and does not have any usable vision.

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Personal blog about a person's experience living with ADHD and mood disorder. This may be helpful for parents of children with ADHD and mood disorders to better connect and gain insight into their children's experience.

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Overcoming AD/HD & Depression With Lots Of Humor And Attitude

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Former SPED teacher offers resources, such as activities and behavior management, with a specific focus on autism.

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Blog created by a school psychologist. Resources for all people involved in special education, including a parents resource tab with vast amounts of information and tips.

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REBECCA BRANSTETTER – Helping Kids Thrive

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3 Ways to Parent a Sensitive, Reactive, or Anxious Child… and Still Feel Good at the End of the Day.
with Dr. Rebecca Branstetter and Elizabeth Sautter
Being a parent means you’re juggling a lot. Pile on meltdowns, trouble with transitions, knee jerk reactions, anxiety and other sensitivities your c…

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Rebecca

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Personal parental account and blog of raising a child with Down syndrome.

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Award-winning Down's syndrome blog offering support, advice and resources as well as showcasing our family life and the experiences of others.

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Intentional IEP Blog is a comprehensive resource to provide information regarding the IEP process, and answer potential common issues/questions for both staff and parents.

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The Intentional IEP Blog - The Intentional IEP

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Excellent resource and blog for parents with children with autism. Provides insight and overview for common experiences of people with autism.

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Our intent is to provide information that may be helpful to raising a child with autism. We anticipate content will range from topics such as selecting a summer camp to sibling support to new research findings. In addition, we will share our perspective on the latest news and information about autis…

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Blog with information and resources for parenting tips for prospective and current parents of children with disabilities.

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The Disabled Parenting Blog features posts written by parents with disabilities and prospective parents with disabilities.

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Basic overview for new parents/guardians to special education looking to receive information about the special education process.

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Has a child's disability recently touched your life? Are you visiting our website today looking for information about that disability? Would you like to find organizations and people that can help address the disability-related questions and concerns you may have?

We're very pleased you're here, because the CPIR has a great deal of information about disabilities to share. We hope this page will:

give you a quick roadmap to the disability world of help that's available in the United States; and

point you to disability resources on this website and beyond that may come in handy, now and as time goes by.

To speed you to information most relevant to you and your situation, we've divided the discussion below into two main parts. Click on the section that seems most relevant to your quest for information today, or just read straight through!

For Parents and Family Members

The Parent Center network is honored to welcome you to the disability community of those who are raising a child with disabilities. There is a lot of help, understanding, and assistance available, you'll be glad to know.

First, A Home Truth About Disability
There are many home truths about disability, but perhaps the most visible one is that "disability is a natural part of the human experience..."

We've quoted here from Congress. This was the first finding of Congress when it wrote the nation's special education law, the Individuals with Disabilities Education Act. You'll find many disability laws in the United States. They are all part of a national policy "to ensure equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities." Not surprisingly, there are many systems in place to address disabilities. These exist at the national, state, and local levels. We'll describe how to connect with these systems in a moment.

Other Home Truths
Given that disability is a natural part of the human experience, you may also appreciate several related home truths. These come from people who have disabilities or those who are involved with someone who does.

Your child is a person first, always.
Disability does not define your child's selfhood, any more than the color of his or her eyes does. Individuality grows from the rich soil of personality, experience, health, education, upbringing, and more. Know this for fact, and see it unfold in real time, as your child grows and matures. Having a disability is part of the mix, but so are your child's strengths, humor, talents, and interests.

Don't let the labels get you down.
We humans like to have a name for things-and that includes disabilities. We use terms like "learning disabilities" or "AD/HD" or "autism." These can seem like labels sometimes, limiting and impersonal. It's not uncommon for parents to resist having a label hung on their son or daughter. Some parents even resist accepting special help for their child because of labeling. Yet--labels are just terms used for a particular purpose. They're a convenient way of referring to something. And in the case of children with disabilities, schools are required to report the number of students they've helped according to specific categories. They have to use labels.

All this is to say: Try not to get too bugged by the label issue. Use the label when it's convenient or helpful, like when you're looking for information on your child's disability. Forget the label the rest of the time. Your child's the same person, either way. He or she hasn't changed one bit, label or no label.

Disability does not mean that your child cannot learn or be educated with peers without disabilities.
Parent Centers talk to many parents who've just learned that their child has a disability. Many wonder and worry that the disability means their child cannot learn or must now be educated in a separate classroom, away from friends and peers without disabilities. Not true. As you learn more about the special education system and how it works, you'll find that IDEA actually prefers students being educated together in the regular classroom.

Also, keep in mind that everyone learns differently. We all have our own personal style of learning, and so does your child. This includes our strengths and weaknesses, preferences and interests, talents and motivation. All of these factors go into how we, as individuals, learn and grow. Your child can learn, will learn. It's the job of special education to adapt instruction to fit your child's learning needs.

Learn as much as you can about your child's disability.
They say knowledge is power, and they're right. It's essential to learn more about your child's disability. How does the disability affect learning, movement, memory, behavior, and so on? What kind of special services help? What type of instruction is effective? These are the kinds of questions to ask. Share relevant information with the professionals working with your child. Also share your insights about your child's learning styles and preferences that only a parent can have.

You know your child best. Does what you're learning "fit" your knowledge of your son or daughter?
So you're reading scads of information about this disability. Keep in mind that not all of it may actually fit your child. He or she is unique, after all. Take the info that fits your child, sounds like your child, or might be helpful to your child, and use it. Leave the rest aside.

You're not alone.
Disability being part of the human experience, it's safe to say that many parents are where you are today, or have been where you are--searching for answers. It really helps sometimes to read what other parents have to say about raising a child with a disability. We recommend reading the short essay You Are Not Alone, written many years ago by parent Patty McGill Smith.

Finding the Information and Help You Need
OK, friend, let's get down to different business-connecting you with resources of help out there. In this section, we're not going to explain anything in detail (the page would never end!). We ARE going to suggest that you visit certain pages on this website. That's where you'll find things explained.

Here's a handy list of topics you can investigate. We've organized them in roughly the same order in which a parent might move forward, gathering information from the ground up. But feel free to jump around, if you'd like.

Each of the choices below will open in a new window, so this page stays open. That way, you can keep coming back to it and finding another corner to poke around in.
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What information are you looking for today? Re: Babies and toddlers, birth to the 3rd birthday:
The baby next door can do so many things that mine can't, and they're both 11 months old! Should I be concerned?
Read our Developmental Milestones page.

Where can I have my little one evaluated to see why she isn't....(sitting up, babbling, talking, walking...) yet?
Evaluations of babies and toddlers are conducted free of charge by the state, when there's a concern that the little one has a disability or a developmental delay. Find out where you can have your wee one evaluated by reading Services in Your State for Infants and Toddlers.

Tell me about the help available for babies and toddlers with disabilities.
We're pleased to! Read about early intervention.

Where do I find help in my state?
You'll want to get in touch with the Parent Training and Information (PTI) center that serves your State. Your State may also have a Community Parent Resource Center (CPRC) that, too, helps parents and family members to connect with vital information and needed assistance in their State and beyond. Visit Find Your Parent Center.

Are there parent groups I can join?
Yes, indeed. Many different kinds, in fact.
Read Parent Groups.

I don't even know what to ask! It's all too new.
Understood. The first steps into the disability world can be overwhelming. But go step by step. There's a lot to learn and know. We humbly suggest that you poke around this website, especially the Repository of Resources, and see what you find. We also strongly suggest that you visit the website of the PTI or CPRC that serves your State.
Re: School-aged children, ages 3-21 I want to read about my daughter's disability.Oh, we have just the place for you to start.

Head over to Categories of Disability and connect with fact sheets on disabilities.
My child is not doing well in school. What should I do?
Ask the school to evaluate your child under IDEA. The evaluation is free. Results are then used by you and the school: (a) to determine if your child has a disability that's affecting his or her schoolwork; (b) to determine whether your child needs special services in school (called special education); and (c) if so, to help you and the school plan what type of help and support your child will receive.
Please read Evaluating Children for Disability.

I don't know much about special education. Tell me the basics.
Sure, can do.
Read 10 Basic Steps in Special Education.

Are there parent groups I can join?
Yes, indeed. Many different kinds, in fact.
Read Parent Groups.

Who can help in my State?
The Parent Training Information (PTI) center and the Community Parent Resource Center (CPRC) in your State. Not all States have CPRCs, but all have at least one PTI. Connecting with your PTI or CPRC can plug you into who's-who and what's-what where you live.

What are my rights as a parent?
That's a great question. The answer is: You have many rights. Hustle over to the Parental Rights section and dive in.

I don't even know what to ask! It's all too new.
Understood. The first steps into the disability world can be overwhelming. But go step by step. There's a lot to learn and know. We humbly suggest that you poke around this website, especially the Repository of Resources, and see what you find. We also strongly suggest that you visit the website of the PTI or CPRC that serves your State.

We hope this brief introduction to the disability network has gotten you started in your search for information and connection. As your child grows and your experience evolves, your questions will change. The Parent Center network stands ready as an ongoing source of answers and connections.
As a parent new to the disability community, you may also find these last few resources on target: The Unplanned Journey: When You Learn Your Child Has a Disability
https://www.parentcenterhub.org/journey/
Parent Participation in Early Intervention (Children birth to the 3rd birthday)
https://www.parentcenterhub.org/parent-participation-ei/

Parent Participation in Special Education (Children 3-21)
https://www.parentcenterhub.org/participation/

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Has a child's disability recently touched your life? Are you visiting our website today looking for information about that disability? Would you like to find organizations and people that can help address the disability-related questions and concerns you may have? We're very pleased you're here, because the CPIR has a great deal of information about disabilities to share.