Parenting Kids with Special Challenges

[khrisday]

Of course all children are special, and they all have their own challenges, but I am talking about children whose needs are truly extraordinary when compared to the norm (be it physical, mental, emotional, developmental or health related) I suggested a board devoted to this but it seems there is not enough traffic at this time (although there have been recent threads regarding Downs Syndrome, Autism, homeschooling special needs, hospital stays, emotional issues, etc) I know you're out there, and I know that I for one do not post much about my struggles as a parent with two children with special needs. The world is not a welcoming place to our children and I have grown hesitant to open myself without a safe haven of similar parents. I would really like to see a separate forum- maybe for all people dealing with special challenges rather than children, or a sub-topic in parenting issues. What are your thoughts?

[khrisday]

Come on, now- 12 views and not a single one of you voted or posted? Are people with disabilities invisible here, too?

[peggy]

Hi kris,
My daughter Molly has achondroplasia, a form of dwarfism. We face many challenges and know no one in real life who has the same condition.
I do belong to a Yahoo group that is very supportive, but since I spend most of my on-line time here, it would be nice to have a safe place to discuss the ups and downs.
I have noticed however few people mention that they have children with "special needs" so I'm not sure we'd get enough members for our own forum.
Great idea though!!

peggy

[LisainCalifornia]

Hi Khris,
I have a son with Tourette Syndrome/OCD/ADHD. I would love to have a place to talk about the different issues that come up with parenting a child with different challenges. Life is never boring at our house:

[khrisday]

Do you (Peggy and Lisa) ever think that the lack of posts mentioning this subject matter is not due to lack of number of people delaing with the issue, but rather the fact that we don't have a place to fit in here? I mean, it's not an illness- they are healthy, you're not supposed to grieve for those still living, and it goes above and beyond what parenting is.

[khrisday]

Lisa your PM option is off but your son sounds a lot like mine- he has tics also, possible Tourette's (not diagnosed) and also traits of (but also not diagnosed) ADHD OCD and depression. Where in Northern Cali r u located? We are currently in Sonoma County but moving to Solano county (hopefully soon as hubby is working out there starting this week)

[khrisday]

This is making me sick- 67 views and only EIGHT votes!?!?!

[gossamer]

I don't know if this counts or not by my husband is a juvenile diabetic and he lost his eyesight 20 years ago. So although I don't have any children yet, we will be special parents. I would love to see a board devoted to special needs.

[khrisday]

It sure as heck does count gossamer- I am thinking more and more there needs to be a board for ALL people dealing with special needs and disability, not just children.

[heartmama]

I just logged on after being away all weekend.

YES I have often wondered about this too. I DO post about ds heart defects occasionally (just had a thread in TAO about a book I saw and hated that was very un AP for this condition).

I think that parenting special needs forum is a great idea but honestly, I almost NEVER see people here talking about having kids with health problems. I don't know why??? Would this just be a dead forum? I participate at Parentsplace on a board for Heart defects...they have a board for every condition under the sun. It is a very active board, and it is *just* heart defects. Sometimes I don't think Mothering attracts the special needs crowd (not the fault of Mothering, just issues with AP not being as common with special needs I think).

I know that Treelove and Organicmama both have special needs kids (I hope I got those names right). But offhand, other than Peggy's little one, those are the only other kids here I know of who have special needs along with my ds.

Heartmama

[veggiewolf]

I will start by saying that my child is not considered by most to have special needs (I won't get into the debate about whether G&T children are special needs children atm). However, I worked in Mental Health for nine years, both as an aquatic therapist and an adaptive swim instructor, and definitely believe there should be a sub-forum for Parents of Children with Special Needs. I cannot tell you how many parents I worked with whose children/adult children were at the residential facility because of embarrassment/loss of standing in their communities. I held one mother who cried in my arms because her 30 year old son had been at the facility for his entire life - and mom let the rest of the family talk her into it. Note that her son has Down's Syndrome and is very high functioning.

I say, if no one speaks up, no one will ever learn the joys/sorrows of living with and loving a child with Special Needs.

-April

[khrisday]

I think that part of the reason we don't hear this subject talked about here is that
1) there's no place for it- doesn't really fit inot any of the categories)
2) many of us get sick and tired of hearing how someone's cousin grew out of this condition, or some other fringe therapy worked wonders, or how "all kids do that"
Just my opinion

[Ms. Mom]

Khris, What a great topic for discussion!

Though I don't have a special needs child, I know that a forum dedicated to the needs and concerns of families with special needs is very important.

Mothering has had several articles on this over the 8+ years I've been reading it. I think it would be a lovely forum for support, information and guidance.

[onehipmomma]

I agree that a special forum is needed. I think that if people felt comfortable in a forum, you may see more discussion regarding special needs and families.


Great thread Khris! good luck!

[queencarr]

I think it would be a good idea. My 4 yo is a former 30w preemie, who now has mild cerebral palsy, and had a heart defect from birth to about 10m.

I think sometimes AP families don't talk much about special needs because "good parenting" can fix/cure/prevent anything, right?

Carrie

[BelovedBird]

My DH has spina bifida, I have no support place because I am not the parent OR the special needs person, whenever I talk about how his condition affects me I just feel like I am Bi***ing. I'm not sure how that fits in, if at all, but it felt good to get it off my chest.

-BelovedBird

[Missgrl]

krisday~
I saw your plea over in TAO and felt the need to come over here
and see! You sound very passionate about your thoughts!
I suggest taking your suggestion to Cynthia in the "QandA" forum!
She'll see it there and will be able to have dialoge with you about
what you see is needed and how to go about getting it done!
good luck

[khrisday]

Missgrl~
I already did that- I got a sort of pat on the hand and "we'll see" type of answer. That's why I starts this thread.

[joesmom]

Khris,

I think a new forum is a wonderful idea. I have a friend whose daughter has Angelman's Syndrome & she is one of the most beautiful children I have ever met.

I like reading about kids who have overcome great challenge, as well as you wonderful mommies raising them, if I hadn't become a mommy myself I would have gone to college to learn how to help kids with disabilities.

Anyway, I voted YES. This place needs a forum for our most special kids!

Love, Jenny

[dreemn]

I dont technically fit here, but I have a son who is much bigger than most kids his age- and louder and faster!

Just thought Id lend my support and say its a great idea!