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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Tuesday, February 2, 2010

Responding to comments

The dust storm we had a few weeks ago: I think it is appropriate for what is happening to AZ families in the disabled community; our Government is losing sight of what is important for our children, visibility for a positive outcome for those who need the most help is unclear, and our eyes are tearing and bloodshot from the dust blowing into them from the bureaucratic double talk.

Dawn said: I feel for you with 3 receiving services.... I pray that something can be done to give your girls as well as so many others the services needed.I heard they are also talking about canceling AHCCCS. No more low income families will have health insurance.

No, the girls are too old for early intervention, they are part of the long term care program. Though the state is considering cutting habilitation . which pays for Meghan's private swim lessons, she is terrfied of water, but getting better thank goodness, and respite, which pays someone to watch your child (even adult children) while you get away for a few hours.

I am certain that parents who do not have children with disabilities will think it is only fair that we pay for those things anyway, since they have to pay for babysitters for their young children, and swimming lessons as well. I believe that is one reason why it will be so easy for the government to cut those things. No one outside our community understands the need for therapy or habilitation. They think it is unnecessary, and completely ignore data proving otherwise. So much for evolution, I believe we are devolving as a society where the community with disabilities are concerned.


Dawn said:
I have seen some families in the USA go through the adoption process here in the USA. I have seen the hurt that the children and their soon to be families being torn from the tug of war. I am currently watching a friend fighting to adopt a little girl she loves so much. Her mother has taken her back and since she is in jail she is having a friend care for the little girl. The little girl born with drugs in her system is staying with mother's friends that are now abusing the poor girl. Why won't someone help this poor little angel?

Dawn, her story is too familiar. I know that most workers at CPS do the best they can, but they are understaffed and underbudgeted. That is how little girls like the one you describe slip between the cracks. I write that, but it is no excuse, they are not doing their jobs as well as they should. Our foster care system is not perfect either, I wish that more attention would be paid to those neglected and abused children, that someone would help before the children are emotionally scarred for life. Who is protecting our kids? Maybe if our government would stop cutting funding to programs and organizations that protect children, these things could not happen?

Leah said...
I have two friends who have adopted domestically who's children were reclaimed. One adopted a set of twins, who were reclaimed by the birth mother at 6 months old! (two days before their final court date.) The other was adopting a child out of the foster care system. The brought her from CA to MN. The birth mother hadn't had contact with her for three years, but upon hearing her daughter was being sent out of state decided she wanted contact. She ended up reclaiming her daughter after she'd been in her soon-to-be adoptive home for 6 months.

That said, there is another, brand spanking new devision of Reece's Rainbow, called "Connecting the Rainbow." There ARE families in Eastern Europe who are keeping their children! Like you said, they have NO support!!! However there are small pockets of parents coming together to form support groups. The ultimate goal of Reece's Rainbow is to eliminate the need for the organization to exist. That's where Connecting the Rainbow comes in. We're working to support those parents who've taken the leap of courage and are keeping their children. To provide them with the information, tools, and other resources needed to help their children reach their full potential. Please go visit, and see how you (and your readers!) can help us Connect the Rainbow, one family at a time! http://www.connectingtherainbow.com/

Leah, domestic adoptions can be so heart wrenching, (so can international) I do not think I could go through that, 6 months and then she is taken from her family? How terrible for everyone. Now she lost a mother twice, I wonder if she will bond with her birth mother now?

I am beyond thrilled to hear about the brave families in EE who are choosing to parent their kids with disabilities, that is the best news. I will be praying their governments give them the support they will need, if the special needs children in orphanages get funds, so should those outside them.

The site has so many of the tiems we currently use, when we are done adn if our items are in good condition, we will pass them on to CTR.

Alice said...
What beautiful girls you have! I love the cat, too! She looks very like one had for 15 years!

Alice, Oh thanks you, I have to agree, I think they are beautiful too!
Harpy is such a bratty cat, she likes to chew my storage boxes to shreds, they are made of cardboard, and she is very vocal, always scolding us with her meows, hence her name, LOL. Her mother gave birth to her in our laundry hamper! She was the only kitten, so her mama took two kittens from another mama cat and hid them under our bed and raised them too! Yes, we had three mama cats give birth around the same time.

Leah said...
A (now 13) started puberty at 9, and she just got her first period last week. For two years we were told "any day", and for two years I told myself I wasn't going to freak out about it. LOL Then, when it finally happened, we were in such a hurry to get out the door for an event that it really was a non-event! Not only that, but later that evening while collecting laundry from her room I discovered she'd had it for a day or two before! Either she didn't know what was going on, or thought it was something else. Who knows! Thankfully it was so light that it wasn't a big deal.

As for voting? People with Down syndrome can vote! Or any body else with a disability, for that matter. And yes, I will absolutely 100% be coaching Angela on who to vote for when the time comes!

Leah, I am not looking forward to dealing with the all of that, I keep thinking of the films we watched in 5th grade; "Growing Up and Liking It". Of reading that little handout over and over and preparing for the day. Thing is, Meghan cannot read well, so she will not be hiding in her room like I did, being very secretive about the great mysteries of approaching womanhood! LOL

I know of age people with intellectual disabilities can vote, I was talking about the children who were losing services. Though I know their parents will not go down without a fight.

Alice said...
I understand how you feel about the puberty issues. We were very sad to discover that A hit puberty in the 10 months since we had last seen him. We are trying to balance out the issues. So we watch Blues Clues for what it teaches him, Ben 10 for age-appropriate monster action, and try to deal with issues a little boy who wears a size 8 shouldn't have to deal with. I just wish the hormones would have given him 1 year home to adjust before hitting.:(

I will keep praying for you and your girls. You really have your hands full. I hope you can get a few hours respite. I so appreciate 15 min. to myself!

Oh Alice, Poor A, that is a lot to deal with all at once.

I hope respite will happen for us, our son is supposed to get trained so he can be the provider, even if he came and I could spend two hours gardening without interruption it would make a world of difference to me. I also know hubby and I would enjoy a night away once in a while. I spend everyday all day with the girls. I love it, but it can also be very tiring when all three are not behaving well.

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