I got the best surprise from my hubby yesterday. Tickets to see Tom Petty in TORONTO!!!!!! I'm so very excited. The concert is Friday night. We're going to leave early Friday morning and come home late Saturday night. My lovely and amazing mother is going to keep the girls overnight for us...again. Have I mentioned recently how lucky I am to have my mother? I cannot imagine how much more difficult our lives would be right now without her. And I'm not just saying that because she is keeping the girls overnight this Sat AND next Fri. So, moving on... Holland fell off the bed once again yesterday and got a good shiner. She's actually quite good at getting down from the bed herself lately. Yesterday she just made the turn a second too late and I couldn't get to her in time.
Other than that I had a really nice birthday. John made me breakfast and gave me my present before going to work. My wonderful friend Lizzie left me a gift, with flowers and balloons and an Iced Cappucino, on the doorstep that I found when I got up. I met John in Ann Arbor for lunch, then went shopping at the mall with the girls and bought myself a few birthday treats. When I got home I had 10 messages from various people wishing me a happy birthday. My favorite was a song..."Happy Birthday, you're 30, but you look like you're 21. Happy Birthday, you're 30, I hope you're having some fun." So funny.
We had planned to have dinner with Liz and Eric, but Lizzie is sick so we couldn't. John's parents came over around 6, just before John got home from work, to bring me my present, then offered to watch the girls so John and I could go to dinner BY OURSELVES!!! A rare occasion indeed. I love dinners alone once in a while so we can remember exactly why it is that we like each other so much. We have such good conversations and so much to talk about. I really like that John... He's a good guy. I was smart to marry him:)
Maybe this should be a separate post, but I was thinking about this yesterday... My mom watches H and E during the school year so I can go to work part time. If it weren't for her I would absolutely not be able to work. Not only would it be far too expensive, but there is NO daycare in the world that would take my girls. Doesn't that SUCK??? Have you ever thought about that??? I know I didn't before I had these kids. Regular daycares do not take kids with special needs. I couldn't put Eden in daycare if I wanted to. Even Holland would be a challenge. Can you imagine her in a class full of regular two-year-olds when she can't even walk? 
I'm so glad I don't have to worry about it. My mom is the best daycare EVER anyway. But I still feel bad for all the other moms of kids with disabilities who can never get a break. It's NOT RIGHT and something should be done about it. And I don't mean a special ed daycare. Kids with disabilities should be able to go to regular daycares and be around other children without disabilities. It saddens me deeply to think about all of the hurdles like this that Eden is going to face in her lifetime. It's too overwhelming to even think about.
Ok, before I sign off I should mention that it is 10:30am and Eden is still sleeping. Holland is watching Sesame Street. That girl watches too much TV. I need to work on that. She just isn't happy unless the TV is on. She cries and whines and says "Bar" and "Ehmo", and "more more." I give in just to get some peace. It's the only way I can get ANYTHING done. I think I am creating a monster.
13 comments:
I agree with you Billie.. what would we do without our mom's? If I am half the mom to my two girls as my mom is to me. Your girls are so beautiful..its not the girls missing out on so called regular kids its those kids missing out on two beautiful strong special girls
Cut yourself some slack, you are obviously doing an amazing job with both Holland and Eden! I am glad you had a great birthday, you needed to be spoiled. You were smart to marry John, he sounds like a really good guy. Just remember, he is lucky to have you too. Have fun at your concert.
Billie, happy birthday!!
I run a home daycare, and there are only eight kids here so it's not quite the same as a center, but I would take the girls in a heartbeat. If it ever becomes necessary, you might look into home cares in your area. I know several ladies around here (dallas) who take special needs kids. Just something to think about.
I am glad you had a great birthday Billie!
Your mom does sound great!
For the benefit of your readers, I just wanted to point out that daycare providers are subject to the American with Disabilities Act and other laws protecting invidividuals with disabilities from discrimination. It would be a shame to jump to the conclusion that a center did not need to accommodate your child without first knowing your rights.
Your #1 Fan in NYC,
Kate
http://www.usdoj.gov/crt/ada/childq&a.htm
Billie,
Happy Birthday!
Also, you are right about the daycare. While they can't legally discriminate, the reality is that most places will not take children with Special Needs. It's not fair, it's not right and it needs to change.
I did find one place a few years back, when Dear Son was ten, that agreed to take him. He couldn't walk, talk, feed himself and need to be changed.(I had tried many other daycare centers and was turned down by all of them and had used the daycare finder offered via my employer too. They came back and said they couldn't locate any providers.) The owner agreed to try taking him for one week. After the first day, she told me not to worry and he ended up staying at that daycare until he was 13, and then was too old according to their rules (plus the women couldn't lift him). All the kids loved him and he blended in beautifully.
You are right to want that and it's important that they be integrated with other kids.
You are lucky to have a mother who will watch your girls. We never had any family on either side that would babysit.
First of all... Happy Birthday!
I've been reading your blog for months, but don't think I've ever posted-- except for that one time when you called everyone out. :-)
I just had to say, if you really want your girls to have a daycare experience, keep searching. I work in daycare for a national chain. Currently, we have a 3 year old who is special needs. She's been with us since she was one. She still can not walk... though is starting to use a walker some. Her therapists all visit her at the center at least once a week. They've been great at helping us find ways to integrate her in to the class so that everyone benefits. It has been AMAZING for all of us to watch how much she has grown in her personality and abilities since she started with us. (Not to mention a couple of children we have in our care who are autistic)
Unfortunately, as best as I understand it, the Americans with Disabilities Act, isn't really of much help. Basically, the only building modifications we have to make is to accomodate a wheelchair and have accessible bathrooms. If caring for a special needs child requires "too much" extra effort, it is up to the center to determine if they can meet the child's needs. You are VERY right in how unfair it is!!! The "extra" we have had to provide for that little girl is very minimal... though I'm sure many wouldn't see it that way upon first glance. As long as we can continue to provide proper care for her, without compromising care of any of the other children in her class (ie-- if she were to need too much one-on-one care and distract the teacher from the other children too much) we will continue to have her there.
Things could definitely stand to be changed, for all of the children like your wonderful girls. It is truly US who would be missing out if we didn't have our special-needs little girl and I am very grateful our center director is so open and accomodating and understands the benefits to everyone involved. Maybe someday, other centers will see it like we do. Until then... be grateful for your wonderful mother. NO ONE can love and care for your girls when you can't be there like grandma can. :-)
Hi- I'm currently researching preschools for my kid in LA. I found 2 local books that detail the good ones and also state if they take special needs, etc. Maybe there is a preschool guide like that for your area.
I was surprised to see that over here, some of the top schools hold spots specifically for special needs kids. These are schools with a 1.5-2 year waitlist otherwise (a huge shock for me, and who even thinks about a preschool waitlist with a nicu preemie?). If you find out what the best preschools are, the directors will probably tell you over the phone who does that and where your kids could go. At least in LA, the directors so far have highlighed on the tours that take great pride in creating diversity and inclusion as part of their programs.
I have a tv addict too. My rationale (and now I totally believe it) is that she is becoming more advanced in language and relationships from Sesame Street and Dora. They really do teach! -E
Happy belated Birthday Billie! I hope your concert last night was wonderful and you guys had a blast. I completely agree with you on the special needs daycare. Thank God for our parents (and especially our Moms). Where would we be without them?? Most people don't even think about the complexities of trying to find childcare for special needs infants/toddlers. It's only when you are put into the situation that it hits you like a ton of bricks. We were blessed to get our 3 year old into the city's school district's special education preschool program this year 4 mornings a week and it's amazing the difference it has made in our life and his attitude. I would ask your PT/OTs if your school district has a program for 3-5 that the girls could transition into next fall after they graduate from EI. Carson's program provides support for CP, tube feeding, vision/hearing impaired, etc. It's wonderful! Anyway, your girls are gorgeous as always and you are such a courageous mom!! Keep up the great work. You can really tell how much you love Holland and Eden through all of your posts.
I'm so glad you had a nice birthday!
And you really are blessed to have your mom who is so willing to help with the girls. I know she and your dad love them so much. Your dad always pulls out whatever new pictures he has and shows them to me at church...or fills me in on the latest news. They are both precious, and I'm thankful you have them.
Lots of love,
Kendra
Happy Birthday, Billie. I honestly am shocked to learn you are 30 (NOT that it's old-I'm 33), but you Do look about 25.
I really did not know that daycares can refuse special needs children. It is so unfair; thank God you have your mother.
Last, I entered Kindergarten knowing how to read (at 4 years old!) The teacher called my mom the first day of school and said I was reading the message to parents on the board, and did she know I could read? Her response? Yes, Big Bird and Oscar the Grouch had taught me. So there you go.
I agree with you on the inclusive daycare thing. Kids like Holland and Eden would likely develop skills faster being around other children. For instance seeing other two year olds walking may motivate Holland to work on her walking. It would only take a small amount of extra effort to include them and it would give them oppertunities for friendships to develop. One of my best friends from high school has severe spasticity and some cognitive difficulties as a result of a brain injury at age 8. She cant't walk on her own and we had to help her a bit more when she came over. After a while it just became routine. What's the big deal about cutting up food, stuff being dropped on the floor, helping someone get a shirt on etc. It only takes a few minutes. We even took her to a waterpark and my brother carried her up the ladders of the slides and held onto her on the way down. Since my family moved across the country, we still talk on the phone or MSN from time to time. Although my friend will always need assistance with daily living she has a steady boyfriend for three years now, works in a supported environment, and is one of the happiest people I know.
Hi Billie
Long-time lurker and well-wisher here but I thought I'd drop in and add my 0.02 Euros...
First... As long as there are the correct staffing ratios and everyone adult has their head screwed on right, there's no reason that a kid like either of your girls shouldn't do Just Fine at daycare. Yes, they would need some small accommodations. That's fine. People can do that. If that's what you want for your babies, go get it. It's out there somewhere.
And secondly - and I know that your girls are still very very young - I wondered if anyone had ever mentioned the idea of providing Eden with a way to move herself around yet. Traditionally kids didn't get anything like a powerchair until they were 7 or 8 but it's recently been demonstrated that anyone with a developmental age of about 6 months upwards can learn to work one, and frankly the earlier the better if it's someone that may use one for some time, or possibly forever.
Just thought I'd throw that in there for you to consider.
best,
Becca (also a long-term wheelchair user)
Happy Birthday! Is it the 5th annual 25th Birthday?
How are the girls feeling sickness-wise?
I agree wholeheartedly with your sentiments regarding being thankful for family & friends that are able to share their love with our kids. It is truly a singular gift when others share the enthusiasm and love. Besides, I know my kids get bored with Mommy & Daddy's crusty old act day after day.
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