Wow!Â I haven’t blogged in ages and now I am starting out with such a taboo subject.Â I hate stirring up the pot.Â I respect people’s choices and feel that most have good intentions behind their actions.Â I hate to write about stuff like this because I never want somebody who has had an abortion to feel that I think they are “bad” people.Â Nonsense!Â As I said, I think most people’s intentions are good.Â
Nevertheless, I feel compelled to write something that could possibly sway somebody who has found out that their child will be born with DS.Â I am hoping they chose life.Â Let’s be honest here.Â It is completely overwhelming to hear that the child you are carrying will have any sort of handicap.Â I only learned of my daughter’s handicap at birth.Â I can not imagine what it would be like to have known in advance of her birth.Â I remember feeling so fearful when I first learned that she may have DS.Â I was so fearful that I would not be able to simply deal with all the challenges.Â I imagine this fear plays a large role in determining wether a parent will choose termination or continue with their pregnancy.Â Oh how I understand so many of those fearful andÂ overwhelming feelings.Â
So for the longest time I hated the whole pro-life vs. pro-choice debate.Â Yes.Â I am pro-life.Â Still, I didn’t feel comfortableÂ speaking out against abortion.Â I always felt that abortion was such a complicated issue.Â There are so many difficult situations that women are faced with.Â It’s not just Down Syndrome.Â Some women have been raped.Â Other women are told of other handicaps or serious physical diseases and birth defects.Â Others have very real practical issues such as money, schooling, etc to deal with.Â Nothing simple at all.
Then one day I heard this wonderful pro-life activist.Â (Sadly, her name escapes me.)Â Anyway, she totally acknowledged these difficult circumstances women face.Â She conceded that theseÂ very circumstances are indeed complicated.Â Â Then she pointed out that they were surrounding circumstances.Â The actual issue at hand was abortion.Â Regardless of the circumstances, one has to address wether abortionÂ is right or wrong.Â She pointed out that if a woman gave birth to a child and thenÂ LATER decided to murder her child becauseÂ these described circumstances everybody would agree this is so very wrong.Â Why is it that we don’t feel the same when the child is killed for the very same circumstances in utero?Â Is it not a human being?Â Does it not deserve to live?
So many of my fears surrounding my daughter’s diagnosis were needless.Â She is my joy.Â Yes, there are times that are sorrowful and difficult.Â But I could never snuff out her life.Â That is the bottom line.Â How can we not allow these little ones to have a chance?Â They have right to live.Â I have come to believe that genetic anomolies are just a natural part of nature.Â There are so many 3 leaf clovers, but we love the rare time we find a 4 leaf clover because it is extra special.Â Isn’t my daughter extra special because of her extra chromosome?Â I firmly believe so.
Potty training has been going on for quite some time now. Donna Marie has a strong bladder and can go for hours without wetting her diaper, so physiologically she is ready. (She is 5 years old and we have been training for a year now.) Basically we take her to the potty every few hours and if she manages to do anything on the potty we cheer like crazy. The problem is she doesn’t grasp WHY we are cheering for her. It’s always better to laugh than to cry so I made this “text to movie” clip about our experience. Cliick on the link below:
I confess. My daughter is five and still sleeps in a crib. We tried the toddler bed a year ago and she kept falling out. I also have worried about her wandering around and getting into trouble. She sleeps well throughout the night, but I worry about her waking before we do and doing something nuts like chewing on an electrical cord. (She’s a chewer!) We have a door and a latch to the downstairs, so worries about her physically leaving the sleep area are not an issue. Still, no matter how much we could baby-proof the bedroom, I have concerns that she will somehow jeopardize her safety. Oddly, I don’t worry about her jumping over the crib rail. She shows no interest in this activity and I don’t think she could physically succeed at this. Of course, the second I notice that she has some interest in “escaping,” I will have no choice but to let her sleep in a bed. For now, I am letting her stay in the crib. Her “roomie” is her 4 year old little brother and he’s been in a “big boy” bed for ages now. Of course, I never had the concerns with him that I have with her. Just wondering if any of you out there still have an older child in a crib. I’m also wondering how some of you have transitioned from crib to bed.
Donna Marie’s school has a brand new state of the art multi-sensory room.Â Â It was obtained through a specialÂ grant.
The room is incredible! Water and bubble filled towers that change colors in response to various types of input. For example, the color of the bubble towers changes in response to vocalization from the child. (Ideal for speech therapy.) They also can change colors when the child steps on different colored squares on a mat. (Great for teaching colors and PT) All sorts of variations. It’s not just the towers filled with water lights and bubbles. There is a vibrating mat, water-bed, fiber optic lights, music and -I kid you not!- a sparkly disco ball in the middle of the ceiling.
It all sounds pretty crazy, but the therapists find so many ways to work with the kids in this room. It seems like my daughter is more focused after a session in this room. They also use the room in different ways with different children. If a child is over active they will start with high energy music & lights and gradually slowly decrease the amount of sensory input. Or, vice versa. If a child is overly subdued they may increase the stimuli to help bring the child out of their shell. To top it off, the room is aesthetically pleasing as well. All white cushioning, beautiful lights, etc. We feel so blessed to have Donna Marie in this school where she has access to such a wonderful resource.
It can cost up to $25,000 to adopt a child from overseas. This can be such a burden for a family longing to adopt a child. A child like Sasha is considered an “at risk” child because at age 3 he is less likely to be adopted than a younger orphan. Because of the DS he will soon be moved from the orphanage into a mental institution where conditions are far worse. When adopting a child is not possible, sponsoring one is a nice way to help. Sponsoring can literally save a life. Reece’s Rainbow helps set up funds for individual orphans so families that want the orphan can be helped. Little Sasha just has $195 in his fund as of this evening. Even if it is just $5 that you can spare, it will make a difference. The easiest way is to mail a check to the address below with a note that the money is designated for “Sasha.” You can also write in “Sasha” into the memo portion of your check. My husband has been out of work for several months, but I have vowed to send a little bit from my paycheck on every payday to help out. Even if all you can give is a few bucks once, it would be great! Here is where to mail the check:
PO Box 4024
Gaithersburg, MD 20885
There are also buttons on the side of this blog with further info about Reece’s Rainbow.
Thank you, Thank you, Thank you!
As usual I am totally confused. I signed up to be a Christmas Warrior. As this warrior I am supposed to get the word out about a particular orphan overseas with DS that needs help to get adopted. (In particular the child needs money in his adoption fund. It costs thousands for a family to adopt a child and bring him home to his “forever family.) I have a button on my website that will connect you to the organization that is devoted to all this. My problem is I looked at so many lovely children in desperate need of a home. I read about terrible conditions in orphanages and how after a certain age these children just wind up in institutions which are even worse than the original awful orphanages they started out in. Anyway, I THINK I am Sasha’s warrior. This is Sasha’s photo in my post here. (Isn’t he a cutie?) Anyway, an email from Reece’s Rainbow says I am” Sasha (2)’s” warrior.Â All I can find is plain old Sasha and no Sasha (2) on the Reece’s Rainbow site.Â I am waiting to hear back from them.Â In the meantime, I am blogging about the Sasha that I THINK I am a warrior for.Â (Hey, worst case scenario, you’ll be reading about another Sasha in a day or two.Â I wish I could get the word out about all of them.Â )
Anyway, Sasha is a happy active 3 year old boy in “Orphanage #3″Â somewhere in Eastern Europe.Â Sadly the conditions in many of these orphanages are not good.Â Sasha only has $195 in his adoption fund.Â As I said it can be costly to adopt.Â Â So please, even if it is just a few dollars, it will help.Â I have a button on my blog that connects you to Reece’s Rainbow.Â You can also click on the AMEX button if you have American Express cardÂ and make a donation as well.Â Â Please let them know the $ is for Sasha.Â Over the next few weeks I will be thinking of ways to get the word out about Sasha.Â I’ll try to find out more about Sasha as well.Â Please anything you can give would be so great
I can’t believe it’s only the 12th day of October as I struggle with this whole “31 for 21″ challenge. I am running out of stuff to write and my writing is rapidly deteriorating and quite frankly getting kind of cheesy and sentimental.
So I have decided on a new tactic! Now I will be writing about cool DS related websites. No more stories about MY kids for a while.
Reece’s Rainbow promotes international adoption of children with DS. Many of these children end up in institutional settings once they reach a certain age if they are not adopted. While it is not possible for everybody to adopt, there are other ways to help out this organization. You can help sponsor a child so that they can finally be placed with their “forever family.” You can help spread the word about opportunities for sponsorship or just donations in general.
While going to the website and seeing these lovely children waiting for their “forever family” can be heartbreaking, it is also wonderful to read about all the families trying to bring these children into their hearts and homes.
Please check out the following link and consider helping in any way possible.
When my daughter was first diagnosed, I worried so much about her being teased by others. I am sure like all kids, she will have to endure her share of teasing. I do have concerns that she maybe subjected to extra cruelties due to her disabilities.
So far, I must honestly say it seems like Donna Marie just brings out the best in others. I have never felt anybody has been intentionally mean or unaccepting of her. Yes, a few children have been puzzled by her making that “mmmm” sound instead of talking. However, once I explain the situation, these same kids seem to be put at ease and seem to take her in. Some adults have been curious about her condition. Once they knew I was open and approachable, they too were put at ease.
For the most part, she has been instantly accepted and I’d even say loved by complete strangers. Today, I saw an acquaintance who only knew my son. I don’t think she even knew I had a daughter. She is sort of a stern and sort of cold person. A good person, but definitely a no nonsense ice queen. The minute she spotted Donna Marie, the ice melted….lol. I saw a side to this woman I did not even know existed! I am so grateful to my daughter for opening my eyes to the possiblity that so many people may be filled with an enormous well of kindness that may sometimes be hidden. I think it is Donna Marie’s pure heart and soul that brings out all this
Yikes!Â I missed a few days (3?) in the “31 for 21″ challenge.Â One or two days, I was just technically unable to post anything and maybe yesterday was just plain old fashioned laziness on my part.Â I am back on track now.Â Sort of.Â I don’t have much to write about, but I’ll try!
Lately much has changed in the way my two children play.Â Â ForÂ the longest time, my two children had very little play time together. Yes, they have much time together and are chronologically close in age. Â However, due to Donna Marie’s delays play time has been limited. For the longest time, Donna simply enjoyed infant cause and effect toys. Play for her consisted of these simple toys and when she would get bored with that she would simply rock a bit to and fro. Not so much fun for Christopher.
Now new changes! Rolling a ball back and forth. Holding hands and dancing. Donna Marie taking an interest in certain TV shows. Christopher has always been attentive to Donna, but finally they are having a bit of fun.Â Â When all else fails, Christopher will have an in depth conversation with her.Â No Donna Marie doesn’t talk yet.Â Â But Christopher talks ALOT.Â He’ll tell her about his day.Â He’ll even throw in a few questions for her and politely wait for an answer for a few seconds.Â Sometimes he will tell me that she says certain stuff.Â She hasn’t really said anything, but he comes up with some creative stuff!Â Both of them are enjoying each other’s company and it is nice to see.
Day 6Â of 31.Â Ever since I started this “31 for 21″ project, October seems like a really LOOOOONG month.Â Â It’s really hard to come up with something new every day.Â I probably had only 3 0r 4 people reading my stuff.Â As they die off from boredom I will be left with nobody to read this stuff.
Anyway, I am taking the easy way out today.Â Just a few photos and aÂ link and that’s it folks.
This is how we have been communicating with Donna.Â She points to a picture of what she wants.Â This board we use at home is as you see it.Â At her previous school she had a device with the same pictures.Â When she would press the picture, the device wouldÂ play a recording of the word being said.Â IÂ imagine it is a similar device at her new school.
We had such trouble with this at first.Â When I tried it at home she would rip off the pics and throw them around.Â (They are attached with velcro.)Â I was so frustrated because at school she was using this system so beautifully.Â I went to the school and was amazedÂ at how she would point to these photos.Â (To tell you the truth, I didn’t believe them when they said she was doing so well at school.Â I thought she was just tapping randomly at the photos justÂ to hear the recorded voice.Â But, indeed, she was pointing to the pictures with complete accuracy and understanding at the school.)
As I said, initially, we had such a hard time at home.Â It seemed like she just refused to use the picture system at home.Â Eventually things got better under the guidance of the speech therapist and all of theÂ tips I got from the teachers and TAs.Â Now she is a pro at this.Â Below is a link to cartoon I made about the beginning stages of using this at home whenÂ I was experiencing the height of my frustration.Â It is aÂ video cartoon I made of what I imagine Donna Marie would say to her teacher about the whole experience if she COULD talk.Â (By the way, these videos are so much fun to make.Â Check out the Xtranormal site if you are interested in trying your hand at this.)Â Anyway, click on the link below: