Helpful Information / March 2018 Newsletter

Find Support With These Groups for 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 refereed 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 

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 mom’s 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 mom’s 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.

Global Developmental Delay

56. Global Developmental Delay

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

Genetic Abnormalities

58. 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.

59. 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.

60. 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!

61. Unique – Understanding Chromosome Disorders

Apraxia of Speech

62. 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.

63. 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.

 

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