A blog to chronicle raising our daughter with Down syndrome.
Creed of Babies with Down Syndrome
My face may be different, but my feelings the same. I laugh and I cry and take pride in my gains. I was sent here among you to teach and to love as God in the heavens looks down from above. To Him I'm no different, His love knows no bounds; It's those here among you, in cities and towns that judge me by standards that man has imparted, but this family I've choosen will help me get started. For I'm one of the children, so special so few, that came here to learn the same lessons as you. That love is acceptance, it must come from the heart; we all have the same purpose, though not the same start. The Lord gave me life to live and embrace, and I'll do it as you do, but at my own pace. -Unknown
Okay so I hope someone out there reads my blog and responds with some good advice. Abbi is way behind in her speech development which I know is normal, but my biggest concern is that she has actually regressed. She has completely stopped saying things she used to be able to say and has even forgotten signs she used to know. She knew all of her colors and now won't tell us any of them. Has anyone else out there had any of these problems with their child??
Today, my little girl who could barely walk last summer climbed up her big slide and slid down completely by herself! I am so proud of her. She has come such a long way since last summer. It seems that each day she is becoming more vocal and learning to listen better. Although she does not always listen well, but she is only three and what 3 year old does that!! She is becoming such a big girl and not so much of a baby anymore. I truly believe she is ready to begin preschool in the Fall. I am glad we waited another year. If only she could say more. She tries so hard and makes all kinds of sounds but can't seem to put them together. I just know that one day she will come out with this long sentence and stun us all. Tomorrow I will try and get some video to post!
Okay, so I am a terrible blogger. Life happens too fast. My sweet little baby is growing up way too fast! How can she possibly already be in a toddler bed! I am so proud of her she has transitioned great, but I am getting sleepless nights getting up constantly to check to see if she has rolled out which she did lots at first b/c she is like a little worm squirming everywhere. She loves her new and seems to be very proud of herself. We just put her in her own room a few weeks ago and already she was ready for the big girl bed.
We have already been to the beach which she loved. It is great to have the summer off with her it allows us to bond again. When school starts back it is always a madhouse around here. I am adding a few new pics below. Enjoy!
I will never understand why people have to struggle against each other when they should really be trying to work together to help a child be the best they can be. The only person they are hurting is the child. A child that is completely helpless for the most part. Why does everything have to come down to money??? I want so badly to do and say what I know in my heart to be right but I can't b/c it may compromise my daughter's chances at getting the help I know she will need to be successful in school. Oh if only I had the time to help educate others about the capabilities of our kids with Down syndrome. I wish I could make them see the potential I see if only they would try a little harder to learn more about our kids. My prayer tonight is to be able to be in a place where I can educate those in need about how to teach out kids. I feel a calling like I haven't felt in a long time but I don't know how to answer it. If doors or windows open or even crack I will find a way to get thru!
Today I was talking with a friend of mine about where Abbi would attend school. I talked about how I really wanted her to start with a group of kids and go with them all the way thru so she would have the same group of friends and feel a part of the community. Then she asked me the question. Where it came from I don't know but it made me feel like a normal parent for once. She asked "What will you do if a boy wants to date her?" I have had lots of people tell me how pretty Abbi is but I thought they were just being polite. My friend also thinks this and b/c of it thinks boys may want to date her. Don't get me wrong I want Abbi to have a companion if she wants one but my friend is the only person who has ever actually brought up the subject. It felt so nice to be discussing something besides being a productive member of society and dream a little about her having a "normal" life as a teenager. I really do hope that a boy wants to date her and she wants to date him. I don't want her to go thru her entire life and only know her family's and friends' love. I want her to know the type of love I have for her dad if that is God's plan for her life. My friend Amy has a son with DS and we joke a lot about them having an arranged marriage. When Abbi was born I thought I would have to give up that dream, but the older she gets I find that I am still hoping she will find her "soul mate" and have a dream of her own!
My little girl is all registered for Preschool in the Fall. We are opting to send her to a private christian preschool with "normal" kids instead of the one offered for "special" kids by our county schools. I really feel it is very important right now for Abbi to be fully included as long as she can. I really don't know what will happen down the road when she goes to kindergarten. I am praying for guidance on that. I know she must be where God wants her to be because we got the "LAST SPOT" on the only days she would be able to go. I know that was divine intervention b/c I have zero luck and they drew numbers for spots and we got the last one!
I am so excited and scared at the same time. Her school is beautiful and her teacher has a special ed background. I know she won't get the type of one on one as if she were in a "special" preschool but I atleast want to try this out and see how she does. Hopefully well!
Hope everyone had a great Easter. I will post pics later.
Our local DS group FRIENDS had their annual Easter Event this past Saturday. My friend Amy & I were in charge. It went great! Abbi loved the Easter bunny and actually hunted Easter eggs. She even took a whack at the pinata and "performed" in the talent show with her Nana!
Today, I am thinking where is my joy? I have let lots of things steal it from me and I am on a mission to take it back. I have more than enough to be thankful for and yet decide daily to dwell on the most unimportant things that make me unhappy.
Lord help me to have a merry heart that doeth good like a medicine and not a broken spirit that drieth the bones!
Well I missed World Down Syndrome Day. So I will post today. Abbi is doing great. We got good news from her kidney doctor. It seems that her left kidney is stable, which means it has gotten any worse and her right kidney is perfectly normal now. I am very excited to hear this. We have been praying since she was born for them to be normal size. She is doing good with her potty training, but we aren't trying too hard right now just offering for her to go. If she has to go when you put her on the potty she will go. But if not she refuses to sit on it. This summer we are going to start trying very seriously b/c when she starts preschool in the fall she needs to be mostly trained. I am hoping for fully trained!
She is doing well, but her language is so far behind. She is three and doesn't seem to have progresed like I was hoping she would. She is starting to get your hand and drag you to whatever she wants, but doesn't seem very interested in telling you with her words or signs. Honestly it seems she has regressed. Needless to say I am frustrated. I hope that when she starts preschool her language will take off b/c she is with other kids.
We'll just have to wait and see. I can' wait for school to be out for the summer!
I can't believe my little girl is turning 3! She still seems like such a little baby to me. I can vividly remember the first time I saw her face and instantly knew she had Down syndrome, but also knew in the same instant that she would be the joy of my life and everything would be okay. Today I am thankful for the opportunity to be her mother and for God's amazing grace! I will post pics of today later. We aren't having her party until next weekend.
Haven't posted in two months! What a slacker! With Christmas, Abbi's Bday coming up and two weddings it has been a little crazy. All here is well. Abbi is doing great. However since she is getting a little older, we are having sleeping issues. It seems as is she takes a nap during the day of any duration she doesn't want to sleep until 11pm or so. I am a person who is ready for bed around 9:30pm so this is greatly affectly my sleep pattern. She has also decided to let us know when she doesn't like something which becomes very interesting during meal times. Gone are the days of my sweet baby who ate whatever I put in front of her with a smile. Now we pass by Mc D's and she yells... French Fry!!! It actually sounds a little more like Fr Fiii. But it is a start.
Her evals thru the school system are off to a good start. We are only asking for OT and Speech. Don't need preschool services when I have my mom. She does such a great job with Abbi. We are going to start her in a small preschool in the fall for a few hours a day a few days a week. Nerve wrecking but it has to happen sometime I know.
She has also decided that she doesn't like people talking on microphones or loud clapping noises. We tried Sesame Street Live this year and we lasted about 5 minutes before she was screaming and climbing me like a ladder. We are told this is a phase and will pass. Oh how I hope so!! Anyone else out there have any advice on this new thing of being scared of clapping and microphones???