Yes, hats off and more state support for parents raising special needs children!

We used to hear from Daisy (Specialmom) and Rev. Matt about their lives with special needs children.  I learned a lot from them.  I hope that they are continuing to manage, and to get some of the support they need. 

I remember when I was working. My boss and her husband (both lawyers) first child was profoundly disabled. None of us knew what to say when we heard the news (her brother phoned me and asked that I tell people "-----had a baby. It's a girl. There are some problems". None of us knew how to act when she brought the baby in to show us. None of us knew what to say when she came back to work. The marriage broke up. He moved away. She accepted a transfer - and we lost touch.

Thanks to all the courageous people who share their experiences. At one time their children would have been shut away in institutions or kept in a backroom and forgotten.

Tired? Yes.

Jealous? Yes.

Alone? Not so much.

Scared? Yes.

I wish people would stop saying...? Not really.

I am human? Yes.

Want to/hard to talk? See WC threads.

Having been part of this "club" of parents of special needs kids, I recognize a lot of what she is saying. I am struggling every day. Can't sleep, mostly. I want Carter to wake up and walk into our room at night. I'll spend hours after midnight just surfing the web, looking for what other parents are doing.

I am not, at this point, functioning at a high level. My brain doesn't stay focused, it always wanders back to things I can't control. Everything suffers, like housework, my memory, and the family income.

There is jealousy when I see a young boy and his father doing things we can't, I admit. That's probably the hardest part for me right nowm but I don't avoid it. I love to see it, and so does Carter. He loves it if the other young boy brings the bat and ball over to let him hold, for example. He wants kids his age to play with him. Some will, for 2 minutes. Most won't.

If you have your kid near a special needs kid, teach them to come over and talk, or play. Just for a bit. You have no idea how special those moments are.

I gotta stop now.

Double post.

thanks, chansen.

My brother is special needs (PDD NOS / Autism) so a lot of this stuff hits home for our family as well.

Thank you for sharing some more Chansen.  I will remember to tell my grandkids about Carter and how important it is for them to play for a bit with special children, to SEE them.

They really, really want to hear a kid call their name. That makes Carter light up, to hear other kids calling his name and talk or play with him. Adults, even parents, can't get the same reaction as another kid can.

bless those parents who intentionally go out to get and nurture a 'special needs kid'

When my now somewhat independent adult daughter was a child (especially when disability first arose) I was (and sometimes am):

tired - sometimes physically, but mostly mentally and emotionally and spiritually as we went through tests, doctors appointments, school meetings - and I did the extra things I needed to do to support her.  And sometimes today when challenges continue to arise in her life.

jealous - especially when her peers began dating, going to pyjama parties, and eventually marrying and having children of their own.  I am somewhat jealous of my friends who are retired like us and have the opportunity of going south for 4 months or even on a two week get-away, and I feel like I can't leave her.

alone - no one really understood what I was going through, and the struggles I continue to have today - you can't understand when you haven't gone through it yourself.

and I add to those ones I wish to add:

angry - when people would intimate that we were "chosen" to be parents to a special needs child because we had the gifts and abilities to be able to raise one.

fearful - when we were uncertain as to her diagnosis and prognosis I was fearful she might degenerate and die.  When she seemed to stabilize into adulthood and I started to age and my body started to wear down I experienced feelings of fear as to who would take care of her when I was no longer able.  I continue to struggle with these feelings, and all I can do is not focus on them when they come.

I love my daughter more than anything - and she is a wonderful human being, despite her disabilities and limitations - but there are moments I would give my life if she could live not having these disabilities and limitations - because I want things to be easier for her than they are.

chansen and Kay mention above about how children want to be included and welcomed by their peers . . . I shed many a tear when my daughter was excluded and left out . . .

aah Beloved. Do you have support?

Gotta say, Beloved, you are a special person.....

You have lived with the stress, and internal pain, of having a child with special needs for a long time now.

I get from your post that it can be isolating and, unlike me with the responsibilities of an elderly mother (I have two sisters), you don't feel you can take  vacations without her.

Yet, despite this, your many posts here reveal you to be a kind woman with a big heart.

Perhaps it might help you a little  to follow Chansen's lead more and be open about your frustrations. disappointments, anger, envy, as you have in this post ?

(But, hey, unlike chansen, you don't have to necessarily get stuck into the Christian fundamentalists).

Nothing hurts us more than when our kids are hurting. I agree, PP, Beloved is a special person and there are many wise people on WonderCafe to unload some of these troubles They always seem to have so many helpful things to help us along..

We have had tremendous support from family and friends over the years.

My daughter receives some support through Family Services ( 3 hours 2 times a week).  She lives independently but needs help with anything that requires mobility (shopping, banking, errands, etc.)  I am her mode of transportation two days a week for week, and the other two she takes a handivan.  She needs help with cooking on the stove.  She needs help with some life skills and decision making.  I comfortably can go out of town and leave her on her own for a couple of days as long as I know everything is in place for what she needs.

Things are easier now that she is an adult - except for the times when she is hurting.  And the times that I fall into worry about her future without us at some point.

Thank you for your kind words Pilgrims Progress .

When one has a child with special needs the pain never goes away . . . and I think it is because you know that they always will need you . . . in some way . . . and you know that others will fall in line when you are gone, but they will never be loved by someone else the way they are loved by their mommy (or dad) .

When one has a child with special needs they remain somewhat childlike - dependent on you - especially if they have any mental limitations - and so it is different than having a child that becomes independent and lives their lives separate from you, on their own.

Our daughter is such a blessing . . . she is funny, and happy, and witty, and caring, and conscientous, and a joy . . . like all persons in our lives - she is a gift, a rare treasure.  I wouldn't want to change anything about her - except her ability to cope better in this world.

As I get older (and especially after this past 6 months of being so ill and unable to do a lot (her dad really stepped in and did a lot) I am more aware that I physically cannot maneuver her as easily as I used to be able to.  I have lost a lot of weight and strength, and she is somewhat heavier (not overweight, but not tiny) - and so it is very taxing on my body.  She needs physical support to maneuver in an area other than a building that is safe - ice in spring, fall, and winter is treacherous - as well as uneven surfaces.  Safety is always a concern.

I know that she (and we) are blessed that her limitations and challenges and disabilities are not what others are struggling with.  I watch a woman I know as she cares for (with such love and compassion and grace) her child with CP . . . I really shouldn't complain.

But sometimes I need to vent, sometimes I need to cry, sometimes I need to be angry . . . and you all welcome that with such love and acceptance - thank you.

Thank you, crazyheart . . . you will never know how much your wisdom and caring has helped me in so many ways since I have been here at Wondercafe . . . and I feel this way about so many here on the cafe - I am truly blessed.