|

60+ Facebook Groups for Special Needs Families

Note: I may earn money or products from the companies, products, or links mentioned in this post.

Nowadays there is a Facebook group for almost anything you can imagine. While others may find that annoying, special needs families tend to seek these groups out to find support and other like-minded families going through the same thing as them.

While it would take me hours and hours to find a support group for every disease, syndrome, and diagnosis out there, here are some that I know are great. I hope that you can find something that is a great fit for your special needs family!

60+ Groups for Special Needs Families

** UPDATED **

Thank you to all the supporters who made this post go viral. I am so glad that this post is helping so many families who need support and encouragement and so they don’t have to feel alone. While I wish I could add every single group out there, I am going to have limit it somewhat otherwise I will be updating all the time. However, feel free to leave your links in the comment section below so that other families can find you!

Find Support With These Groups for Special Needs Families!

Special Needs Families

1. The Mighty – While this isn’t exactly a “group” it’s an incredible, supportive, and encouraging page. I find so many posts I can relate to on here and have even wrote some for their site myself!

2. Mommies of Miracles 

3. A Very Special Needs Christmas – A group to provide AMAZING Christmas ideas for your special needs children.

4. Tips for Special Needs at Disney 

5. The Wolfpack  – The Wolfpack is a closed group for families who have 2 or more children with special needs and/or super powers.

6. Special Needs Swap Meet – This is a place to list any items you may have around for your special needs kids. Do you have items you want to sell, give away or swap that has to do with special needs? List it on here.

7. Special Needs Swap 

8. Special Needs Equipment for Sale 

9. Special Needs Parenting Bloggers – This group is for bloggers who post about special needs parenting or disability issues. Share, discuss, and ask questions about blogging and specific issues about special needs parenting and disabilities.

10. IEP Assistance and Special Needs Parenting Advice – A place for special needs parents to connect for IEP advice, special needs parenting tips and more.

11. Special Needs and Disabilities Ministry Leaders Forum – A discussion forum for special needs and disability church ministries leaders and volunteers! This is a site where we would love to have you post your questions, offer your insights and encourage one another in our day to day effort to help meet the needs of all God’s people.

12. Special Needs Moms Organizing and Cleaning Support – The life of a special needs mom is very demanding mentally, emotionally and physically. Our home often falls apart around us whether it’s the messy kitchen or the hoarded closet or basement or mountain of laundry. We often go unappreciated and sometimes all we need is the motivation and to be cheered on!

13. SWAN USA (Syndromes Without a Name) – This is a Closed group for families with children who remain undiagnosed. The children are often referred to have one of the following; Undiagnosed Syndrome, Mystery Disease, Unique Condition, Unknown Diagnosis, Mystery Illness or a Syndrome Without A Name. This group allows families to connect with one another across the country.

14. Loving a Miracle – Special Parents Supporting Each Other – This is a group designed for parents of micro preemies, & special needs children. It is intended to be a place to connect with other parents who “get it,” whose experiences go beyond typical. It allows us to give, and receive support, as we face the unique challenges we share because we happen to love a miracle.

15. Make It Tips for Special Needs – This is all about ways to MAKE IT work for our kids, homemade, re-purposed, new, used in a new way. The focus is physically challenged and developmentally delayed, and all special needs are welcome if you think you can benefit.

16. Pediatric Medical Supply Exchange – A place to buy, sell, or exchange medical supplies for your special needs child.

17. Special Needs Moms Network – Welcome to a place for special needs moms to hang out, encourage each other, and get support!

18. Special Needs Survival 

Special Needs Military Families

17. American Military Families Autism Support (AMFAS) – Find your local chapter by typing in AMFAS and the city you are stationed at. A great support!

18. EFMP Support Group – For military families who are in the EFMP.

19. Military Families With Complex Kids 

20. Military Special Needs Network

Autism

21. Autism Discussion Page – Helping children feel safe, accepted, and competent.

22. Parents of Autistic Children

23. Autistics Worldwide 

24. Autism Living on the Spectrum – This groups purpose is to create greater Autism Acceptance through providing support and guidance for parents and/or carers of children living with Autism through inspiration, experience, training and knowledge along with providing information for professionals and community members.

Sensory Processing Disorder (SPD)

25. Sensory Processing Disorder (SPD) Support

26. SPD Parent Support with Positive/Gentle Parenting

27. Sensory Processing Disorder Parents – A group for parents and families of children with sensory processing disorders. A safe place to vent, ask questions, and offer support.

28. Sensory Wonderland – A group to share ideas on sensory play, fun sensory play space ideas, and sensory diets to address behavior.

29. SPD Connect – Solutions to the daily challenges of Sensory Processing Disorder (SPD) also known as Sensory Integration.

30. Raising a Sensory Smart Child – Inspired by Raising a Sensory Smart Child, the award-winning book and resource for parents, this community is about helping kids with SPD.

31. Learning the Sensory Way – Discovering DIY ways to create a sensory learning experience.

32. The Sensory Spectrum

33. Voices of Sensory Processing Disorder Discussion Group – This group is an extension of The Sensory Spectrum website. (www.thesensoryspectrum.com). This community is a place for parents to ask questions of other parents and share their own insight/experience to help other sensory parents in our group.

Cerebral Palsy

34. CP Mommies, Daddies, Grandparents, and Caregivers – This page is for all to vent, brag, tell all our amazing stories about your munchkins living with CP.

35. Cerebral Palsy Parents Information Group

36. Spastic Quadriplegic CP

Mitochondrial Disease

37. Mito Families – This is a group for ALL people affected by mitochondrial disease. Whether that is your child, you, a grandchild, niece etc. We are a non-medical group designed to share our experiences, encouragement, and HOPE for a brighter, healthier future.

38. MitoAction – MitoAction is a nonprofit organization that exists to improve quality of life for all who are affected by mitochondrial disease. We provide support, education and advocacy tools for adults, children and their families. Our mission is to help patients LIVE with mitochondrial disease.

Cystic Fibrosis

39. CysticFibrosis.com

40. Cystic Fibrosis – This is an open group for people with CF, people with family members who have CF, or doctors who treat it.

41. Cystic Fibrosis Foundation

42. CF Parents Group – This is a support group for parents/grandparents/carers who have a child/children/grandchild with Cystic Fibrosis or look after a child with this condition. Please note this group is not suitable for people with CF due to some of the subjects discussed

Dyslexia

43. Dyslexia Support for Parents of Dyslexic Children – Dyslexia Support, is an international group for parents of Dyslexics.

Hypotonia

44. Hypotonia Parents Connection – A discussion and support group for parents of children with hypotonia.

Reflux / GERD

45. Infant Reflux: Support for Gerdlings

46. Reflux Rebels – The Reflux Rebels are volunteers who share the common thread of infant reflux and are here to provide emotional support as other families advocate for the most effective treatments for children.

47. Pediatric Feeding Disorders /FTT/ GERD/ and Kiddos With Feeding Tubes – A place for parents of infants/children with feeding disorders, Failure to Thrive and GERD to offer each other support and advice. Many of us moms also have kiddos with feeding tubes or are in the process of weaning.

Feeding Disorders and Feeding Tubes

48. Pediatric Feeding Disorders /FTT/ GERD/ and Kiddos With Feeding Tubes – A place for parents of infants/children with feeding disorders, Failure to Thrive and GERD to offer each other support and advice. Many of us moms also have kiddos with feeding tubes or are in the process of weaning.

49. Tubie Friends – For parents of kids with feeding tubes.

50. Feeding Tube Awareness

51. Home-Based Feeding Tube Weaning – This group offers support for weaning children from feeding tubes once those tubes are no longer medically needed. We focus on methods that respect the child, use appetite, and support *parents* in our own “tube weans.” We invite you to share your stories and experiences with home-based weaning!

52. G-Tube Babies (G/J),(J),(N/G), and (N/J)

53. Feeding Matters 

54. Real Food for Tube-Fed Kids – This group is to support parents and caregivers in their quest to feed their tube-fed children the very best real food! We are here to share information and ask questions in a positive and helpful way about food, supplements, nutrition, getting started with a BD, challenges, successes, new products, personal experiences and more.

55. Blenderized RN – This page is run by a registered nurse that does real blended food consulting for children and adults with a g-tube. Discussions are only about real food and blending topics.

56. Hope Love and Real Food 4 Tubies – “The group is for tube-fed children/adults and their caregivers who want to explore food as medicine/functional food nutrition through their feeding tube. From age 2 to 102, group members discover why food and nutrients are vastly important in health. The group features whole foods nutrition information, education, encouragement, recipes, and posts. It’s the ultimate nutrition support group for tubies!”

Global Developmental Delay

57. Global Developmental Delay

58. My Child has Global Developmental Delay – There isn’t much help or support for parents of a child with global developmental delay. It is such a wide spectrum disability with various other health problems and disabilities thrown into it.

Genetic Abnormalities

59. The Unknown: Chromosome 22: Duplication – This is a place for those navigating the world of the chromosome 22: micro duplications to come, meet, share experiences, ideas, and suggestions.

60. Chromosome 22 Central – For members of www.c22c.org, families who are dealing with all chromosome 22 disorders, such as trisomies, translocations, deletions, rings, infant loss, miscarriage, etc.

61. Mass General Hospital 22q11.2 Clinic – The 22q11 Deletion Syndrome Clinic at Massachusetts General Hospital provides expert and evidence-based health care for patients with 22q of all ages!

62. Unique – Understanding Chromosome Disorders

Apraxia of Speech

63. Apraxia Kids: Every Child Deserves a Voice – This is the Facebook group for CASANA and Apraxia -KIDS – helping children and families affected by apraxia of speech (childhood apraxia of speech, verbal apraxia, verbal dyspraxia). Information on speech-language therapy, diagnosis, and events related to apraxia.

64. Apraxia Kids Learning Activities and Support – Parent Led Group – A parent led support group. A positive place for families to network, connect and share resources.

Spina Bifida

65. SB Parents Facebook Group – This is a closed group for parents, caregivers, and supporters of those with or affected by Spina Bifida.

66. Rolling With Spina Bifida – For those who have Spina Bifida, for those who has a family member with it and for the family members and friends of those who have it. This group is for everyone! This is a place for you to ask questions about Spina Bifida, no matter what!

67. Spina Bifida Association

68. United by Spina Bifida

69. Expecting & Considering Fetal Surgery for Spina Bifida – This is a closed support group for those that have received fetal surgery for spina bifida and also those that are expecting a child with spina bifida and are considering fetal surgery. The main purpose of this group is to provide support for those looking to receive fetal surgery for spina bifida.

What are YOUR favorite special needs groups? I’d love to find even more to add to this list!

Similar Posts

77 Comments

  1. Facebook open page – global developmental delay

    Facebook closed group – my child has global developmental delay

  2. Learning the Sensory Way looks at ways to integrate the senses with learning. It is geared at neurodiversities such as ASD, ADHD, ODD, DCD and other developmental disorders. Its a very positive group filled with like minded people with backgrounds in OT, SLP, autism support workers, teachers, homeschoolers with a wide range of pedogogies including waldorf, montessori, reggio, unschooling, traditional and more! It provides support with behavioral issues as they arise as well.
    The group is pasted in the website.

  3. Wiedemann Steiner Syndrome
    Closed groups found through Facebook search:
    Wiedemann Steiner mommies and daddies (just for parents and primary caregivers)

    Wiedemann Steiner families and friends
    (For families, friends, and adults with WSS)

  4. A lifestyle blog, where we talk about “Creating A Happy Home With A Little Something Special” Special Needs Parenting, Down syndrome, recipes, fashion, travel and more

  5. There are a bunch of groups for Brachial Plexus injury or Erb’s Palsy
    Here are some:

    Both the following are organizations that are simply awesome and worth joining
    https://www.facebook.com/TheUBPN
    https://www.facebook.com/groups/210320982399469/

    Then there are a bunch of personal pages, for example my own (link above) and
    https://www.facebook.com/ImaniFight
    https://www.facebook.com/HannasErbsPalsyAwarenessSupport
    https://www.facebook.com/Oliviaserbsjourney

    and there are parent groups
    https://www.facebook.com/groups/199852043405235/
    https://www.facebook.com/bpimommies

    There are so many more too, I just pasted what I found first…

  6. Hi, I run a support group for parents of girls with ASD on FB called The Sisterhood Of The Asperger Girl. We are Australian based though have members from the USA, UK & NZ

  7. Thank you SO very very much for putting us in the #2 slot, we are incredibly honored and work hard to make our group resourceful, helpful, hopeful, compassionate, and support for everyone impacted by “exceptional needs”.

  8. Hydro Families and Hydro Family on FB, these groups are for anyone dealing with Hydrocephalus. My daughter has Hydrocephalus and so many people don’t know about it. The people in these groups became part of my family.

  9. This is an excellent resource, thank you for posting. Perhaps you might like to add our organisation? We offer support to parents/carers in Northern Ireland? The Special Educational Needs Advice Centre (SENAC) offers free, independent advice to parents and carers on the Special Educational Needs System in Northern Ireland. We offer assistance with Statements, Individual Educational plans and offer guidance and support with communicating with schools and Education Authorities. We offer an Advocacy service and can accompany parents to meetings. We also have a specialist advocate for children and young people with the the care system.

  10. Thete is an Amazon fb group called Winnipeg Mom’s Night Out. Doesnt sound like a special needs group, but it is. It is a private group, for moms who have special needsbjids of any kind in and aroind winnipeg. It is a support where moms cam ask questions, get help from each other if we need it, and once a week they organize a coffee night out so that mamas who can, can have a night out and noy feel so alone in the world. There ia also a *Winnipeg dads night out* group forming as well

  11. SO disappointed that you completely missed The Sensory Spectrum (www.facebook.com/sensoryprocessingdisorder) and the parent group Voices of Sensory Processing Disorder (www.facebook.com/groups/voicesofspd).

  12. This is for families of children with bowel problems. It is a closed group, and kept my head together with a child with a serious medical condition .
    It is worldwide and has been a group for approx 20 years. On Facebook and email.

  13. I hope you include the group, and great idea you had, a sort of on line dictionary for support! Well done

  14. If you have a high functioning autistic child, search for high functioning autistic children group and request to join, then PM me (Helen simon Helene) for the rules. I can safely say that our group is drama free and one of the most supportive ones out there 🙂
    (let me know that you found us through here!)

  15. I know you already have made up the list, but you did ask if there are other Facebook groups that people should know about. ours is called FACES Autism Support Group.
    We have over 1000 members, and we are mostly parents who share information education and support with one another all over the world. Our children are all ages and all levels on the spectrum. Some members are adult self-advocates.
    The Facebook group is an offshoot of our physical support group based in New Jersey FACES 4 Autism.

  16. Blenderized RN I was surprisingly disappointed with! She has no accreditation as an RD. That’s risky business to run a business on. Plus read a conversation on there that if you don’t feed organic and don’t reject formula all together then you’re parenting wrong. Referencing dubious sites like mercola, I just wanted to share with others to do your research before paying money

  17. https://www.facebook.com/groups/1415262778784917/

    Dyspraxia for Parents

    A group providing abundant information on various treatments/therapies, support and home/school based techniques available across the globe. From a range of topics, such as, physiological aspects, nutritional advice, craft activities, inspiring educational activities; to research leading to new ideas of how the future will be shaped, into a progressive development to help children with a learning delay.

    Main focus is on dyspraxia and touches on neurodiverse conditions as well.

    Please add it, its very resourceful.

    1. Admin of Dyspraxia for Parents gave this group as a suggestion to add to your list – but her comments/suggestion have been deleted from this discussion. Quite frankly, I am disappointed at the prejudice here and thoroughly disgusted.
      With all due respect to most groups concerning verbal dyspraxia, apraxia of speech, where mostly parents are venting – and venting is healthy… You do actually have Dyspraxia for Parents group being the most informative group on this subject.
      I am disappointed that Admin’s comment/suggestion has been deleted and ignored!!!

      1. Hi Tracey,
        No comments have been deleted. They did not show up because each comment comes to me first for approval and I had not approved them yet. I approve each comment so my comment section is not full of spam.

  18. Just to clarify here – the Admin of Dyspraxia for Parents did not post that in response to kathrynann24 – it was for you to take into consideration to add the group to your list!
    I know, because I was with Admin of Dyspraxia for Parents group when she added that suggestion to you – but somehow mysteriously it got added as a response to kathrynann24 – which is totally a mystery because that’s not what the Admin did.
    Very disappointing! At least one group is out there making a difference – whether you add it to your list or not!

  19. Easy to Love, but Hard to Raise is a Facebook group that started in response to the book of the same name. Our group is for parents of kids with invisible disabilities, e.g. ASD, ADHD, FASD. Our focus is on parents, offering support, camaraderie, and a safe judge free space to vent.

    We even have an annual retreat!

  20. I see that Fetal Alcohol Spectrum Disorders isn’t listed above. The Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) offers a closed Facebook group to parents and caregivers in Minnesota called the Virtual Family Center https://www.facebook.com/groups/MOFASVFC/. Other supports and resources can be found on the MOFAS website at http://www.mofas.org.

    Other FASD Support Groups I’ve found are:
    – Parenting FASD Kids https://www.facebook.com/groups/ParentingFASDkids/?ref=browser
    – Russell Family Fetal Alcohol Disorders Association RFFADA https://www.facebook.com/groups/21239288051/?ref=browser
    – Flying With Broken Wings https://www.facebook.com/groups/FASDaFlyingwithbrokenWings/
    – Living with FASD https://www.facebook.com/groups/LivingWithFASD/
    – Fetal Alcohol Syndrome Support Group https://www.facebook.com/groups/154082984716801/
    – Roots to Wings https://www.facebook.com/groups/107590619262912/

    Please consider adding these to the Support Group.

    Thanks!

  21. My daughter has many medical issues and you did not list one of the groups I belong too and there are a lot! Scoliosis groups, club feet, tethered spinal cords, imperforate anus, cloaca, kidney disease are just a few issues that there are tons of groups for! Good article, but needs a lot more research!

    1. If I added a group for every disability or special need out there, I would be here for days. I didn’t intentionally mean to leave anyone out. I have two special needs kids and have a life as well. I put a lot of groups that I personally know from experience are good. The comment section is meant to be a place where people can leave the links they want so that others can see the other groups that are out there. That way more is covered, but I can’t be expected to do it all myself.

  22. 4-5 kids in every classroom in America struggle to read. Many have dyslexia and if it’s identified early and specialized instruction is provided, kids with dyslexia can learn to read and do well in school. There are 50 state Decoding Dyslexia Chapters and resources here: http://www.decodingdyslexia.net. Can you please include it on your dyslexia website list please?

    Thank you!

    1. There are quite a few, so I’m surprised to not see any listed here (since Ds is the most common genetic disorder).

      I will come back later and post some that I know of.

  23. Congratulations on your initiative and efforts! Parents of children with specials needs all the loving support they can get, as there are so many time pressures that fill their days – and leave little time or energy for searching for help. As a parent, too, and also director for statewide network in Massachusetts, I would like to introduce you to Parent to Parent USA, a national umbrella organization that supports programs like mine, Family TIES of Massachusetts. Through the P2PUSA network, parents can connect with the parent-to-parent program in their state or other affiliate organizations. Their website is: http://www.p2pusa.org and they also have a Facebook page. Best wishes to your family and to you, in your work. Feel free to reach out to us anytime.

  24. Hi there! Thank you so much for this list. Would you add my group? I’m a physical therapist and I own Rapha Physical Therapy (www.raphapt.com). We provide physical, occupational and speech therapy services to infants, children and adults with special needs and developmental disabilities. We’re located in the Inland Empire, in Montclair. My group is called “Rapha Physical Therapy Helps Kids With Developmental Disabilities.” I post videos of physical therapy exercises that parents/loved ones/caregivers can do with their little ones at home to help with functional mobility. I include instruction and answer questions about how to strengthen, strengthen, etc parts of the bodies. I also give advice about how to procure therapy services. Feel free to join the group also. I would greatly appreciate it if you would add us to your list. Here is the link: https://www.facebook.com/groups/160870170629258/

Leave a Reply

Your email address will not be published. Required fields are marked *