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Post by faithhope on Mar 16, 2008 21:56:19 GMT -5
What I mean is, I have more of those questions that I often have and I hope that none of them are offensive or too nosy. Just always thinking of these things. One of my constant thoughts is speech. Do all kids with Ds have speech problems? Do they ever speak "normal? Can they have and hold conversations? Do they bring up conversations? I think that this is one of my biggest worries for Noah. ONe of my biggest fantasies before Noah was born was dreaming of hearing this baby talk one day, Having conversations with my child, hearing my child drive me crazy with too much talking eventually ( hahaha). Also does anyone with Ds ever learn to drive? ARe they ever independent enough to drive? That was another dream I and I imagine we all have. Also how tough has the reality been as your children get older? Or does it actually get easier because you Know THEM. KWIM OK now I have some fun questions, What is your childs favorite food? What is their favortie thing to do? I know I am asking too much I will stop for now I have to stop becuase Noah is in the mood to play and he is just looking way too cute ;D I can't resist him! Thanks, Jess
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Post by Valerie on Mar 16, 2008 22:27:53 GMT -5
Well, I had to answer this, cause I just can't resist talking about my little guy! As far as speech goes, that has always been one of my top worries, and I think it varies for each child how well and how soon it comes. As for Nicholas, he has TONS of words he can say, but often leaves the beginning sound off it. He is just now starting to string two words together, but he can almost ALWAYS get his point across! He also knows over 200 words in sign language, but as he learned to say the word, pretty much dropped the signing, although he still knows them, cause he'll throw them out there once in awhile. But knowing those helped tremendously for him to let us know what he wanted before he was able to say the words. Also, just so you know, just because they have difficulty getting the words out, does not mean they don't understand what is being said. Trust me, they do. And it doesn't mean they don't know stuff, it's just harder for people to pick up on what they do know. Nicholas knows all his abc's, upper and lower case, and the sounds they make, and can count and recognize numbers up to 20. He's also been able to read several words from the time he was 2! OK, this is getting long, so I'll move on and answer some of your other questions! Favorite food is anything that involves cheese, pizza, and any kind of bread. Favorite thing to do...LOVES water, going to the lake or pool, likes to play ball, drive his big foot truck, watch the wiggles, sing/dance, read books, pretty much anything you'd imagine a 4, almost 5 yr old would like! OK, I've went on long enough. But thanks for letting me talk about my guy! OH! I had to come back and add this, almost forgot! Yes, there are people with DS who drive. And it is one of my goals that Nicholas will be able to someday. His older brother says, "There's no way in hell he's NOT gonna drive!!" ;D
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Post by jelanismom on Mar 16, 2008 22:40:04 GMT -5
LOL Jessika, I always like answering your 1,oooo questions! ;D ;D Seriously I do! So let me see...ok speech I know is one of the biggest challenges for most people with ds. and it's a combination I've read of low oral muscle tone and cognitive delays and hearing loss. My son has all 3 and he's slowly making strides in his abilities to form words...but speech naturally follows a pattern of development in all children no matter Ds or not. So my son is in three word phase...putting them together isn't always consistant. But he has excellent receptive language skills...he knows exactly what is being said...and it IS frustrating for him when he's unable to communicate with words, so he's being taught to sign in school along with PECS...I'll explain that later Meanwhile, I expect him to be in speech therapy for a very long time and I'm trying to get Regional Center to help me pay for add'l speech hours because he's only receiving 1 hour per week. I love his baby days, I took so many pictures and still do. He's my first and may very well be my only and I just spoil the heck out of him! I can't help it...and I predict I'll have him living with me as long as he wants and needs me...I plan one day to just build an extra wing in whatever home I move to and it'll be his half of the house! I don't think I could stand being away from him...and given whatever his abilities may be, as far as driving...not sure... I don't know anyone who drives and has Ds personally, others here will know...very good question! Right now it's hard to tell...he's only 5...and I really can't see that far into his future...he's always surprising me! Oh he absolutely loves music, all kinds and has many musical toys, talking toys w/ music and videos like Elmo and he also loves his books but he's been more into music lately. He loves icecream, sketti (spaghetti) and salads...cookies, cake, and yogurt....and all kinds of fruit esp,. nana (banana) ;D
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Post by laurasmom on Mar 16, 2008 22:41:43 GMT -5
Jessika, I love your questions. Speech is a problem for most with DS. Laura does have speech difficulties, and is receiving speech therapy. She has a huge vocabulary, just can't pronounce the words clearly. Her ST is great, she is isolating the sounds Laura has difficulty with, and concentrating on those. We are seeing a difference. Sometimes Laura is difficult to understand, and I have to ask her to repeat things. One of her biggest difficulties is slowing down, she wants to tell me something, and everything runs together. Many times in public, the problem isn't with her speech, it is getting the person we are talking with to talk directly to Laura. The best example is in a restaurant. The server will ask us what she wants. We just turn to Laura and say "I don't know, lets ask her". It doesn't happen all the time, and after we show the person she can speak for herself, they usually respond quite well. Laura and I have some good conversations. We will talk about movies, books, family. If it interests her, she will talk about it. She does ask questions, initiate conversations. And repeat what she hears. Meaning, a child with DS, just like one that doesn't have it, will repeat the last thing you want them to, such as when you let a curse word slip. So watch out There are adults with DS that have driver's licenses, and do drive. I know of one young man that drives himself to and from work and church. He doesn't drive anywhere else, and he follows the same route each time. but he is driving. At the NDSC convention last summer, I talked to one mom who bought her son a golf cart. They have quite a big parcel of land, and he drives himself all over in that. He does quite well, and fully understands not to leave their property. I hear all the time of adults with DS who have learned to use public transportation, such as a bus system, quite well, and use it to go to work, social activities, etc.. The toughest question is your one about the reality as they get older. This will be different for everyone, of course. For me, it comes and goes. Laura is so wonderful, and such an amazing part of our family. But there are times it is difficult still. Those times aren't that often anymore. And really, when they come, are easier to deal with. Now for the fun questions. Her fav food? Definitely hamburgers. Pizza is a close second. Her fav thing to do? Music, she loves music. She loves to be in her room, listening to music, singing along and dancing. Reading is a close second. She likes to read. Whew. That was fun. Thanks for asking. Sharon
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Post by dannysmom on Mar 16, 2008 22:49:25 GMT -5
I love talking about my son.....but he's still young (3 in June)...but I'll answer what I can. Yes, Daniel talks....he most definitly gets his point across. Seeing how my daughter developed her speech....and seeing how Daniel is devleoping....yes, it's different. It's taking him longer to figure out how to make the sounds. However, he does figure it out...and he's trying. When he does speak, he sounds just like a typical little boy....but he has the speech pattern of probably an 18 month old. That's ok though....because he's constantly making progress and he will talk and I believe talk well someday. He's got the basics down...he's a pro at No, All Done, Cookie and Pizza. He also says Momma in the most beautiful way . We have a friend who has a 15 year old daughter with Ds. She speaks VERY well. We sat with her last fall at our Buddy Walk. She was just a doll. Very funny personality....outgoing and friendly. Her mom says she has tons of friends and is enjoying her high school experience. She will take drivers ed....but her mom wants her to be just a bit older. A few weeks ago, I was walking into the supermarket and out walks a woman with Ds. If of course gave her a big smile and hello which she promptly returned with a smile. I was getting my son into the carriage....but I'm kind of a Ds stalker so I waited to see where this woman was going. She was pushing her own carriage full of groceries. She walked over to a car, put her groceries in her trunk and DROVE AWAY. Ok, so she drove herself to the market, shopped, paid for her own groceries and drove home. So, yes....people with Ds do drive Ok, onto food. He's a carb lover....so breakfast is waffles, pancakes or eggs. He loves pizza, chicken, broccoli (yes he does ......pasta. Pretty much mostly everything we eat. He can get fussy.....but so does every other 2 year old. Favorite thing right now is reading books. He's learning colors....so he loves his Curious George rainbow book. His favorite color is blue. . He says it like "Buu". As far as how tough it is as they get older. Well, Daniel is still a baby.....but I will tell you, it has gotten easier just in this last few years. He had heart surgery, so his first year of life he had surgery at 8 weeks....and I spent the rest of the year worrying about his heart. Thankfully, his repair was very good and we are now only seen yearly by a cardio. Now that I've let go over fear for his heart....I've just enjoyed being his mom. I won't lie.....I would rather not have him need therapy....but he loves his therapists and they love him. They give him the extra help he needs to perfect his speech...and develop his fine motor skills. They've become part of our extended family. I always tell his special educator "You are the nicest person I never wanted to meet". But you know, you get used to it. I no longer dread evaulations.....it's not the funnest part about Ds.....but hey, it comes with the territory. Typical kids have their things that aren't fun either. So, it's all in how you look at it. In the beginning....I hung on every evaulation...hoping those scores would show he was typical. You know....some of his scores do show he's typical....and others show his delays. But you know......as you see your son develop and grow.......you'll come to realize that it really doesn't matter if he walks at 2 years old instead of 1......he'll get there when he's ready. I know I've told you before that Daniel held out a loooong time before saying Momma...he was saying things like Purple Ball before Momma....but he got it....and it sweet Keep those questions coming......I love talking about my son.
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Post by Emilysmom on Mar 16, 2008 23:11:14 GMT -5
Jessika, I think Emily's biggest "issue" is her speech intelligibility. We've worked SO hard on it from the time she was a year old. And still............it's tough! And, I think it's the one area where SHE feels uncomfortable too. She has to realize that people struggle to understand her, and I can't begin to imagine how frustrating that is for her. Like Sharon said, we work mostly with her on slowing down, because she talks very fast! That helps a lot. She also speaks too quietly, so even when she is speaking CLEARLY, it's hard to hear her!! I've talked to lots of children/teens with Ds over the years and have met quite a few who have "better" speech than Emily. It's one thing I want so much for her to improve in over the next few years. She does have a decent vocabulary, and certainly understands everything that is said to her. What always surprises me is her sense of humor!! She can come off with a funny reply SO fast, and always catches me off guard.
I have known of a few people with Ds who drive. It was always something I really wanted for Emily. But over the years, I've watched her.........and I do worry about her ability to respond quickly enough to driving situations to do it safely. I believe she could pass the written test. When she turned 16 last summer, we told her that we'd rather have her wait until she was 17 to talk about driving. (I know........not fair to her, but I just wasn't really ready to deal with it and didn't want to crush her hopes) So now she reminds me all the time that she'll soon be 17 and can't wait to drive. An example of why I hesitate on this: I've watched Emily get hurt in the past; like getting her hand closed in the door of our van. It's like one of those slow motion things where I saw it happening but couldn't stop it. And I've watched her face as it happened........the door was totally closed on her hand and it took quite a few seconds for it to "register" on her face and even longer before she reacted to the situation. And I feel that drivers have to have QUICK responses to things all the time! Emily's favorite food, hands down, is Chicken and dumplings!!! She also loves pizza and Japanese food and french fries.
Her favorite things to do are: Dance, watch movies (at home and at the theater), listen to music (tooo loud!) and read. She also enjoys shooting hoops, bowling, and swimming.
And, I also enjoy the questions........gives me an "excuse" to rave on and on about Emily.
Susan
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Post by Jessie on Mar 17, 2008 5:07:08 GMT -5
You need to visit a local group to see some kids firsthand to ease some of your worries!!! LOL I think you will be pleasantly surprised. Unfortunately for Jason, speech is THE biggest issue for him. No health problems, he doesn't require any other therapies of any kind, speech, that's it. It's really amazing though how he does communicate with people even if it's without understandable verbal language. He was actually voted class clown at his summer camp last year. How is that possibly when they can't understand him? It's hard to explain it, but they love his sense of humor. Yesterday we went to have our family pictures taken and the photographer and her assistant LOVED Jason, they thought he was hysterical. He was pretty funny actually. As far as a favorite food, probably french fries still reign supreme, but honestly, this kid will eat ANYTHING. His favorite thing to do right now is play his new PS2 game that he got for his birthday. last weekend. Driving . . . probably not in Jason's future. Loves to zip around the yard on the lawnmower, but I don't see us pursuing driving a car anytime soon. Keep the questions coming, you are offering a great opportunity for everyone to talk about their favorite subject!! Jessie
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Post by alisonzmom on Mar 17, 2008 9:27:05 GMT -5
Like others have already said, speech is an issue for folks with DS. And there is such a wide range of abilities. For me, speech is a biggie for Alison. We can all understand her at home but people who aren't as familiar with her do have difficulty understanding her. She's already aware of this and if asked to repeat herself too many times will look to either of her sisters or me and say "Help tell her/him please". There's a great book that deals in early language development in kids w/DS from Woodbine House www.woodbinehouse.com/main.asp_Q_product_id_E_1-890627-27-5_A_.aspI got this book to use before Alison was approved for speech therapy in Early Intervention ( long story there.... grrrrr) and loved it. Her speech therapist liked it so much that she went out and got a copy for herself! Some of the stuff you're probably doing already - but ya just don't realize it! Now to the fun questions!!! Alison's favorite things to do....... wrestle with her Dad and sisters, color, read, sing ( very loudly and VERY off-key!!!) and dance, go for walks...... Alison's favorite foods....... any kind of pasta/noodle, grapes, pork ( I can get her to eat just about any kind of meat by telling her it's pork!), and the ultimate Alison food - "fry-fries in a bag"!!!!! Oh, and she is the condiment queen, loves ketchup, mustard, mayo!!!! Barb
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Post by steffaroni on Mar 17, 2008 9:32:35 GMT -5
Do all kids with Ds have speech problems? Most do but the probs can be minor to major to somewhere in between Do they ever speak "normal? YES some do some kinda do some don't Can they have and hold conversations? Do they bring up conversations? Olivia my girl can and does hold some rather intense to silly conversations.Her intelligibility is awesome and speaks almost up to par with about 4th graders and shes in 5th.Heres an excerpt from a conversation she brought up this morn. "MOM do we have a field trip in star today? No Olivia not till wed. Can I stay home n watch I carly and be lazy today? No Olivia. Chase Pis#sed me off at star Fri mom. he took my magnets. I don't wanna go. I LOVE U MOM can't I stay with u n kyle pleaaaase? I'll be specially gr8 today. Okay Liv only if u don't watch tv. NO MOM NOT FAIR. I HAFTA watch it.I'll be bored. then go to star. alright then but I am NOT HAPPY. lol..Will u make me a turkey sandwich with sweet mayonaisse and mustard? okay Liv. Okay I'll go to star. LOL
child drive me crazy with too much talking eventually ( hahaha).yes yes n yes lol
Also does anyone with Ds ever learn to drive? ARe they ever independent enough to drive? I know a girl with ds who does drive but she scares me out here in l.a. But yes but few do.That was another dream I and I imagine we all have.This is NO dream I have for olivia here in l.a. and with her vision.
Also how tough has the reality been as your children get older? Or does it actually get easier because you Know THEM. KWIM OK now I have some fun questions, What is your childs favorite food?everything lately asparagus What is their favortie thing to do?watch tv and play with pals n paint
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Post by Chris on Mar 17, 2008 9:52:11 GMT -5
Speech is the area where Sarah is most delayed. She was just tested and as far as her understanding what is said to her, she is just under what a typical 6 year old understands. In other words, she is barely delayed in receptive language. Her expressive language is what frustrates her the most. The best thing we have done for her is to teach her sign language. It not only gives her a language to express herself but it also helps her to get the words out orally. I can't say enough wonderful things about ASL. Start investing in the Signing Time DVDs. They even have a couple that are designed to teach babies to sign. I have met some adults with Ds who had very good speech but I think as a whole, it is the area where many struggle. Like I said before, most understand everything you say to them. BTW, we get such a kick out of what Sarah does say. She is just too cute! ;D I don't personally know any adults with Ds who drive but I know they are out there. Will Sarah ever drive ? I can't imagine it now but then again, who can imagine their 6 year old will ever drive. SUSAN ~ I didn't let my typical daughter drive until her senior year. I just didn't feel that she had the maturity before then. I just wanted to assure you that many of us with typical kids think 16 is just too young. BTW, I am so happy that I made her wait because I feel more at peace. She is much more mature than she was a year ago. I think as you get to know Noah, you won't focus on the Ds as much. Pretty soon Noah will just be Noah, not my baby with Ds. KWIM? Some things will get much easier and some things will get harder, like once he starts walking and gets into everything (like Sarah is doing right now as I am typing on the computer! She just walked in the room wearing a bathing suit. I'm scared to look in her room). Favorite food ~ KETCHUP!!!, ice cream, ranch dressing, veggies, pizza, spaghetti Favorite activities ~ going to school, going to church, throwing toys, reading books (then throwing them), emptying drawers, watching the same dvds over and over again , helping put the groceries away, helping put the dishes away, making people laugh ;D Chris
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Post by Jackie on Mar 17, 2008 10:23:21 GMT -5
Jess...I think speech is a big issue for all of us. Because of having lower body tone...our kids often have somewhat gutteral sounding speech...but I really do think that good PT and speech therapy can make a big difference. I think that strengthening the torso muscles is a very good idea...and I have heard that therapeutic horseback riding is great for this.
For us the hardest part was language acquisition. This seemed to take a long time with Em...but it did come and she can carry on normal conversations now as an adult. However, she is quiet...and not one to initiate conversation. Also you will find that many of our kids tend to "clam up" when you ask questions...needing a bit more time to process their answers.
I remember that Emily's first real words were not until about 3. I remember her coming into our family room and pointing to an E.T. mask on the footstool and saying..."That's E.T"...her first sentence!!!! and great cause for celebration.
An odd thing about her speech development. She went to a "language development" preschool program between ages 3 and 4 where the emphasis was on communication not particulary ennunciation. The whole year she was in this she hardly ever said a word (we could watch thru a two way mirror window). But when she would come home and get into the bath with her multitude of Barbies and bath toys...she spoke in full sentences and totally easy to understand. And a funny here...Karen the speech therapist took them to the grocery store one day to buy supplies for a class party. Emily's job was to see out crackers and cheese. Karen said she heard Emily loudly calling to her...(unusual for Em) and saying ..."Kawren...I found the f**kers and cheese!" ;D
A lot of parents have found that signing with their child has improved speech and communication in general. We tried it ...but just for a month...all Em seemed to learn was..."more cookies!"...LOL. You will find all sorts of books and videos on this topic. I personally favor reading from day one...and using those cardboard books with actual photographs to teach language. I have used them with all my grandkids too and noticed their speech development because of them.I love beautifully illustrated children's books but don't think they work as well as pics of everyday things.
Some parents have kids that never quit talking...and a part of me has always envied those parents and kids. But because Emily is quiet...it has been in her favor in that we never have had many behavior problems because of it. She is easy to understand and if you speak with her you might not even know she has DS if she is at her best.
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Post by Jackie on Mar 17, 2008 10:30:18 GMT -5
Jess...I think speech is a big issue for all of us. Because of having lower body tone...our kids often have somewhat guttural sounding speech...but I really do think that good PT and speech therapy can make a big difference. I think that strengthening the torso muscles is a very good idea...and I have heard that therapeutic horseback riding is great for this.
For us the hardest part was language acquisition. This seemed to take a long time with Em...but it did come and she can carry on normal conversations now as an adult. However, she is quiet...and not one to initiate conversation. Also you will find that many of our kids tend to "clam up" when you ask questions...needing a bit more time to process their answers.
I remember that Emily's first real words were not until about 3. I remember her coming into our family room and pointing to an E.T. mask on the footstool and saying..."That's E.T"...her first sentence!!!! and great cause for celebration.
An odd thing about her speech development. She went to a "language development" preschool program between ages 3 and 4 where the emphasis was on communication not particularly enunciation. The whole year she was in this she hardly ever said a word (we could watch thru a two way mirror window). But when she would come home and get into the bath with her multitude of Barbies and bath toys...she spoke in full sentences and totally easy to understand. And a funny here...Karen the speech therapist took them to the grocery store one day to buy supplies for a class party. Emily's job was to seek out crackers and cheese. Karen said she heard Emily loudly calling to her...(unusual for Em) and saying ..."Kawren...I found the f**kers and cheese!" ;D
A lot of parents have found that signing with their child has improved speech and communication in general. We tried it ...but just for a month...all Em seemed to learn was..."more cookies!"...LOL. You will find all sorts of books and videos on this topic. I personally favor reading from day one...and using those cardboard books with actual photographs to teach language. I have used them with all my grandkids too and noticed their speech development because of them.I love beautifully illustrated children's books but don't think they work as well as pics of everyday things.
Some parents have kids that never quit talking...and a part of me has always envied those parents and kids. But because Emily is quiet...it has been in her favor in that we never have had many behavior problems because of it. She is easy to understand and if you speak with her you might not even know she has DS if she is at her best.
Also I started from day one talking to Em like she was able to understand every single thing I said to her....
You asked some other things...but I will answer them later...this is way too long...
Jackie
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Post by Chris too on Mar 17, 2008 10:38:41 GMT -5
Wow, there are some great, long posts here. I just want to add that Stevie had a speech delay until she got a speech therapist. After 9 months of therapy, she was talking at age-appropriate levels & above in some areas. When she lost her speech therapist, she got one that was low-key & quickly declined, then she lost that therapist & was without for 2 months. When she finally got a new therapist - who was perfect for Stevie - she had a 50% delay (talked like a kid half her age), which put her behind where she was when she lost the first SLP. Now 8 months later, she is mostly at age-appropriate level for speech & her clarity is fantastic. She is ahead in some areas, but they are mostly in the descriptives that all the therapists work on: big, little, red, blue, etc, soft, pretty, hot, warm, cold. She speaks about 300 words spontaneously and has been consistent about using 2-word phrases, and often puts three words together independently for complete sentences. She sings along to songs she knows, hitting maybe 1 word in 10 or so. She does the hand motions to 2 or 3 songs too.
Points: every kid is different and responds differently to therapy and environment; not all therapists will get the most out of your kid - some "click" with them and others, though good therapists, do not; Noah will probably communicate with you in ways that delight you and make you proud.
Favorite food: chocolate ("kok-lick") Thing to do: dance ("I dancin' ")
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Post by Chris too on Mar 17, 2008 10:40:18 GMT -5
Oh, you should ask Leah (lespring) about cued speech. It looks fascinating & she says it greatly improves clarity - you should hear Angela talk! Wow.
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Post by Googsmom aka Jennifer on Mar 17, 2008 10:49:56 GMT -5
While Brook is still young, well almost the big two , she does know alot of words. Like i've said before, her theripist wanted her to learn sign but being the stubborn ass I am, I decided she will just talk. And she does.( although I truely think it's amazing the kids who do know sign and I have thought of learning it but, well, I haven't) Of corse she doesn't know a zillion words but what she does know is how to get her point accross and who everyone is. She can say mom, dad, eat, up, down, done, out, off, ba (bottle) ter (sister), sean (her big brother), hi, i did, i do, what it, NO ,ab (aunt ab), ya (cousin maya) plus a few more i can't think of right now ( haven't had my coffee yet ) More importantly to me right now anyway, is she knows what i'm saying to her and will do it. I say go get a book, she will. Go get a toy, she will. Get in your sleeping spot, she does. Close the door, she will. All kinds of stuff. I really think being around her 24/7 has made a big difference and not treating her any different than the other kids around here. Plus having a pushy mom who will settle for nothing less than at least a good try, but you have to try, probally sucks for all my kids, but bummer for them She does know most of her body parts too and can point them out on herself, others and even on things in a book. We really practiced that alot when she was about one, and she caught on real quick so now were working on saying them, or should I say, her saying them. Who knows what the future will hold for Brooker. For now we just keep on practicing and learning and praying she will retain all this info. Driving.. oh goodness. Thankfully Brook is still little. Mary will start driving a car here in a couple years. I'm a little nervous but she will be fine. Just like myself, Mary was driving a tractor by 3, by herself, riding a dirtbike w/ mom sence she was heck like 2, alone by 4, she had a go-cart then too and drove everywhere, and just last year "graduated" to a big girl dirtbike (250) and is a very good driver of all those things. Brook will be no different but I am waiting a bit longer w/ her. Food, everything in sight Her favorites are apples, raisens, cherrios, rib eye and french fries. She had a taste of fries when she was little but because she had acid reflux, we had to take em' away, but she can have them again now and she loves em' Activities, everything! She is just a happy-go-lucky kid. Loves to read, or pretend to read and right now she is in front of her mirror brushing her hair. She just loves to play and loves "school time". I could go on for hours about Brookster. I will stop now I better go open the office and go to work.
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