Today we toured a center based therapy facility that we are hoping to enroll Sweet Pea in very soon. Our regional center will supposedly fund the child for 3 days a week at this therapy center in ADDITION to all the other therapies that she is already receiving. Now let me explain what this center based therapy facility does...
They have a program that is for 18 months - 3 year old children, most of whom have some sort of a disability (the highest percent of kids are in the autism spectrum, but they have all sorts and many that don't have a diagnosis yet, but there seems to possibly be something not quite normal). It's 3 hours a day from 8:30am to 11:30am. The daily schedule is as follows:
8:30 - 9:00 Exploratory Play/Floortime - They have a few activities set out and the kids can do whatever they want. I think at the end of this they do a circle time, but we were busy touring so I didn't see this part.
9:00 - 10:00 Focused Therapy Groups - The children are divided into either speech, PT or OT in small groups of 2-4 students and they get 50 minutes of a specific therapy. The therapists evaluate each child and determine what his/her needs are and so if Sweet Pea goes 3 days a week, then she will probably have one session of each during the week.
10:00 - 10:15 - Snack Time - The kids are broken into 3 groups to help keep it more manageable and then they are given water and a snack. Today the kids had goldfish crackers and Sweet Pea got to join them and sit in her own chair and she behaved like a big girl. Mommy and Grandma were very impressed (Daddy had to get back to work). At the end of snack time they do a little circle time and Sweet Pea loved all the songs that they sang!
10:15 - 11:15 - Centers (Sensory Motor, Cognition, Gross Motor, Pre-Speech/Oral Motor) - 15 minutes is spent in each center and the kids visit each center in the hour. It is setup so they do a sedentary center and then a motion center so that the kids are able to keep their focus better. We started with Sweet Pea in the ball pit and then she went into Pre-Speech and she did great in both centers.
11:15 - 11:30 Circle Time - Songs, listening, etc
Since Sweet Pea is currently in a day care that is pretty free flowing and doesn't have a lot of structure and directed play, this will be a big change for her. We feel that this will really help prepare her for preschool and also help her to enjoy some of her therapies even more since she will be doing them with other kids.
Because Sweet Pea is getting 7 therapies a week currently, we expect to dial that back some when we start this program. We aren't going to cancel anything right off the bat, but our expectations are to drop from 2 times a week of each PT, OT & Speech and 1 time a week of infant stimulation to just 1 time a week of PT and OT, keep the 2 times a week Speech and drop the infant stimulation all together. That will still be 4 individual therapies, but I think we can work that in. We will see how it goes and make adjustments as necessary.
We thought that we wouldn't be able to start until 18 months, but the center today said that they would accept Sweet Pea today if we had approval because she does seem fully ready for the program. That made me very happy to hear and I couldn't agree more that she is definitely ready for such a program. If this had been offered 2 months ago, there is no way that she would have been ready, but the advances that she has made even in the last month were very apparent when she was there today and I have to say it again, I am so proud of her!
Here are some photos of her from today at the center:
Fun in the ball pit
I just loved this look. She was looking at the boy next to her and you can just see her thinking something...not quite sure I want to know what it was though...
Oh boy! Crayons!
Of course I cut off the part that shows her actually drawing, but she was! At least for a second or two!
Does she look like she is enjoying this place?
Look closely at the center of her top and bottom lip...Sweet Pea decided that since she had a boy on both sides of her she needed some lipstick. She had a pink "dot" that is kind of like a huge marker for making dots and decided to paint her lips with it. I thought it was too cute and it was a good color on her.
Playing with the teacher:
She had a great time and while she was crashed out within 5 minutes of us leaving, I really think she is going to like this place and that it will be really good for her developmentally. Now that we have decided we like this place, now we have to do the real work...1) Get regional center to approve her funding for going 2) Start working to extend her morning awake hours so that she doesn't want to nap in the middle of the session (she often naps around 9:30 currently) 3) Figure out how to move the feedings around so that she doesn't miss too much food and to ensure that she has a snack that she can self feed while she is at the center 4) Eventually we will have to rearrange our therapy schedule and I know that is not going to be fun. It will definitely be worth it though and I can hardly contain my excitement for this new phase of her learning to begin!
Tuesday, August 31, 2010
Sunday, August 29, 2010
Happy 17 Month Birthday!
It's extremely hard to believe that Sweet Pea is already 17 months old! And no, not because she doesn't look like a 17 month old and not because she doesn't act like one although those are both true. I just don't feel like I've known her for 17 months and maybe in part that is true (read the New Parents posting to understand that comment), but I'm glad that I know her now!!!! Oh, and let it be said that I do enjoy having her be a little baby for longer than I will get with baby #2, even if sometimes it is difficult.
So much has happened in the last few weeks that I need to try to remember and get written down here as I haven't done a birthday post in a number of months now (I know...bad Mommy).
Gross Motor Milestones:
Crawling: Army crawling very proficiently and uses her legs to help propel her instead of just dragging them along for the ride. Uses army crawling as her primary mode of transportation. Sweet Pea is still working on her true crawling (quadruped or on hands and knees), but she is now able to do it for a few feet instead of just a few inches. Yesterday she was showing off for us at a friends house and went 2-4 feet a couple different times. Every once in a while she does a couple of motions of bear crawl (crab crawl, up on hands and feet), but so far it hasn't become a habit.
Standing: Sweet Pea LOVES to pull up to stand now! She still doesn't do it very long, but it is getting longer. She will probably stand for 30 seconds most of the time, but can do 1-2 minutes if she really wants to. She has learned to bend her knees and use the appropriate muscles to get her into standing instead of just using her arms and stiff legs. While she is learning how to bend her knees to sit back down, she seems to forget this is what you are supposed to do most of the time. She starts hollering when she wants to sit, but if we tell her to bend her knees and sit, she is starting to remember and do it. This morning Daddy and I were awoken to her screaming and when I looked at the video baby monitor I see her near the top (raised) side of the bed with only her feet and calves showing because she was standing and couldn't figure out how to get back down apparently. Since we have her bed at an incline the top part of her bed is not very far down from the top of the railing and so now I have to worry about her lunging herself over the edge since she is a little dare devil! Either we need to put a tent on the crib (net thing that you zip up so that the child can't climb out) or we need to move her to a bed on the floor pretty soon. The tent is probably going to be a nuisance, but I'm not ready for her to be in a big girl bed yet! I think we will ask our pediatrician at her 18 month check up for her recommendations and in the meantime I will try to find the net and get it installed. Thanks Sister for handing down all the boys stuff!!!!
Language: Sweet Pea is definitely understanding a lot more than what she can express. Sweet Pea hasn't picked up too many new signs, but that is mainly because we aren't working on it with her like we should be. She now knows eat, more, please, thank you, all done (now it is always two handed!!), bye (this has unfortunately morphed into two hands when the all done did), and her newest word is dog. She picked dog up quite quickly and nearly every time she sees the dog she starts beating her belly. It's supposed to be hitting the side of your thigh, but she has chosen her belly so we accept it but keep showing her that it should be down on her thigh. She gets so excited when she signs it and we say dog! It's clear that she is putting two and two together. Now we just need to start teaching her more and more signs. I just learned the sign for music and so I'm starting that with her. Continuing to work on milk or drink as neither of those have been picked up yet. She does the sign for milk, but never when she means milk.
She has expanded her babbling sounds and will now babble quite regularly. I don't think she has said mama or dada specifically yet, but I swear that she is getting REALLY close if she isn't actually doing it yet. Tonight she was sitting on me half asleep and she just looks up at me with those gorgeous blue eyes and says mama in a half asleep voice and I almost started to cry. The reason I'm still not giving her credit for it is she immediately continues it with mamama and other sounds, but for a split second I thought we had it! She used to not speak in front of most people, but she is getting much more vocal regardless of who is around. The OT therapist at our local DS support group play date today was commenting on how well she expresses herself and interacts with those around her and another of the mom's pipes in with something about how Sweet Pea is extremely opinionated and isn't afraid to let it be known. I laughed because it is so true! This little girl will quickly let you know what she is thinking one way or another! When words do start coming they might be fast and furious and they might not be the words I'm hoping them to be. I can see NO being yelled at me in the not so distant future and many others that are even worse.
Eating: Sweat Pea doesn't like to eat for her parents. She continues to eat much better for daycare than she does for us. We keep saying that it is a good thing that she is at daycare more than she is at home! We have reverted back to giving her things that require chewing because she isn't open to the therapy method of getting her to learn to chew and so our only hope is to practice with real food which she is definitely willing to do. She loves veggie sticks, Kix cereal, baby goldfish, bread (we made breadsticks out of whole wheat pizza dough, but any bread will do), cake, cooked pasta with olive oil drizzled over it (anything to add a little healthy fat to her diet) and anything else carb based. She will tolerate many of the stage 3 baby foods and is starting to want to eat what we eat. With her dietary restrictions it makes things hard, but we do the best we can. She is back to eating soy and so we have her on soy yogurt many days which she seems to think is okay, not great but edible.
She is on the straw #2's in Sara Rosenfeld-Johnson's straw hierachy (www.talktools.net). She does pretty well with them, but boy are they a pain to clean. She also needs to put more than 1/4 inch of it into her mouth so we are working on improving that part.
Weight: She weighed 21 lbs 6 oz the other morning on our home scale!!!!! I'm anxiously awaiting our next doctor visit next Thursday for an official weight, but I'm optimistic that she will be in the mid 21's! She will finally be graduating from her infant carrier car seat into a convertible car seat (the kind that can face backwards and then when they reach 35 lbs or 2 years you can turn them around and use them forward facing). We don't know how long we will keep her rear facing for. It's safer to have them that way so I will try to do it for a long time, but 35 lbs could be 10 more years! Alright, not really, but it could be a VERY long time.
Therapy: Sweet Pea is currently getting 7 therapies a week! She has 2 PT, 2 OT, 2 Speech and 1 Infant Stimulation/Development. Between those appointments and her doctor appointments this is one busy little girl! She handles it all very well and we are pleased that most sessions of PT are no longer crying fits and I could not be happier that we FINALLY made the switch of PT's a few months back now. I'm not thrilled about our speech therapist, but since it is the only one within a reasonable distance, I'm "sucking it up". It takes us 20-25 minutes to get to speech which is annoying, but far better than the hour plus that it would take to get to the valley which is where the insurance company is telling me my only other choice is! We are hoping that Daddy's insurance will bring us some new options in January, but until then we are just doing the best we can.
Toys: Her favorite toys at the moment are:
1) the Fisher Price Ocean Wonders Soothe and Glow Seahorse that lights up and plays music (I know...shocker that she likes something that lights up and plays music...but she actually was afraid of this for a little while and now she just adores it).
2) Next would probably be the Fisher Price Laugh and Learn Say Please Tea Set that has a tea pot that sings and makes sounds when you open/close the lid and tip it over (she bangs this thing on the floor and unfortunately into Daddy's face and we are hoping she stops before he loses any teeth).
3) plastic water bottles...empty or full or somewhere in between are all just as good...don't know why she is so fascinated, but I love it because we normally have a water bottle accessible.
4) This is more of a game than a toy, but in the morning when Daddy is getting ready to take her to daycare I say goodbye and then she reaches for Daddy, when he has her then she reaches for me again. This used to just be a Mommy - Daddy - Mommy - Daddy move, but now she is wanting to go many more rounds and will even do fake outs on some of the transfers! It's very funny! The sad part is that when Daddy takes her out the door she has started to get a little upset. It doesn't last long, but it makes me sad to see her upset to leave me (but it also makes me so happy because she really does love me).
5) I am not sure this one counts, but her all time favorite toy right now just might be the bathtub...yep...that is right...the bathtub. Now it has to be filled with warm water for her to enjoy it, but when it is, boy does she love it! The squeals that come out of her when she hears the water running and we say/sign bath. I wouldn't be surprised if that is one of her next signs! This was the first place that she wanted to show off her new skill of pulling to stand and I think she is getting better at just kneeling in the tub as I don't want her to be standing for her own safety. She slipped once and wasn't too happy about it, but of course it didn't teach her so I'm trying to just keep her on her knees and tonight it went pretty well. Here is the proof...
Sweat Pea-isms: Her current signature move is this motion of putting her arms up in the air as in "who me?" or "I don't know" (without the shoulder shrug). We get comments all the time from people that see her doing this and think it is just the cutest thing. I can't argue! I don't think I've ever captured it on film so I will try to do that before it becomes a thing of the past for her.
Sleep: This is an area that has gone downhill. She still goes to bed at 7pm, but now she not only wakes up for her twilight feed sometime between 9 and 10:30, but now she wakes up anywhere from 1 to 3 times during the remainder of the night as well. She doesn't seem to need anything, but Daddy turns the seahorse toy on and she quiets right down again. Many times she doesn't even seem really awake. I wish I understood what was causing this or how to stop it. Maybe we need to just not go in there and let her cry it out? Daddy is really nice to me as he is a lighter sleeper and so he often gets up to deal with her and lets me keep sleeping (thank you Daddy). To top all the middle of the night wake ups, she is now also waking up closer to 5:30am! 6am was okay, but 5:30 is just too darn early! We normally ignore her until 6, but with the stunt she pulled this morning I'm not going to feel safe ignoring her until we get the net installed over her crib.
Overall Health: Sweet Pea has actually been VERY healthy recently!!!! (Knock on wood!!!!) She hasn't had a cold or a fever or anything in at least a month! This is so rare that we are really enjoying it. I know that cold and flu season is right around the corner, but I hope that it takes it easy on Sweet Pea this year. (As I was wrapping up this blog post Sweet Pea starts coughing in her sleep! Hope it is just a fluke!)
I apologize for this being such a long post, but since I haven't done a birthday post in a few months I wanted to make sure that I captured most of the highlights. Sweet Pea is becoming more of a little girl with her own personality every day and although it might drive me batty sometimes, I truly do revel in it and I love the little girl she is becoming. Her smile still melts my heart.
So much has happened in the last few weeks that I need to try to remember and get written down here as I haven't done a birthday post in a number of months now (I know...bad Mommy).
Gross Motor Milestones:
Crawling: Army crawling very proficiently and uses her legs to help propel her instead of just dragging them along for the ride. Uses army crawling as her primary mode of transportation. Sweet Pea is still working on her true crawling (quadruped or on hands and knees), but she is now able to do it for a few feet instead of just a few inches. Yesterday she was showing off for us at a friends house and went 2-4 feet a couple different times. Every once in a while she does a couple of motions of bear crawl (crab crawl, up on hands and feet), but so far it hasn't become a habit.
Standing: Sweet Pea LOVES to pull up to stand now! She still doesn't do it very long, but it is getting longer. She will probably stand for 30 seconds most of the time, but can do 1-2 minutes if she really wants to. She has learned to bend her knees and use the appropriate muscles to get her into standing instead of just using her arms and stiff legs. While she is learning how to bend her knees to sit back down, she seems to forget this is what you are supposed to do most of the time. She starts hollering when she wants to sit, but if we tell her to bend her knees and sit, she is starting to remember and do it. This morning Daddy and I were awoken to her screaming and when I looked at the video baby monitor I see her near the top (raised) side of the bed with only her feet and calves showing because she was standing and couldn't figure out how to get back down apparently. Since we have her bed at an incline the top part of her bed is not very far down from the top of the railing and so now I have to worry about her lunging herself over the edge since she is a little dare devil! Either we need to put a tent on the crib (net thing that you zip up so that the child can't climb out) or we need to move her to a bed on the floor pretty soon. The tent is probably going to be a nuisance, but I'm not ready for her to be in a big girl bed yet! I think we will ask our pediatrician at her 18 month check up for her recommendations and in the meantime I will try to find the net and get it installed. Thanks Sister for handing down all the boys stuff!!!!
Language: Sweet Pea is definitely understanding a lot more than what she can express. Sweet Pea hasn't picked up too many new signs, but that is mainly because we aren't working on it with her like we should be. She now knows eat, more, please, thank you, all done (now it is always two handed!!), bye (this has unfortunately morphed into two hands when the all done did), and her newest word is dog. She picked dog up quite quickly and nearly every time she sees the dog she starts beating her belly. It's supposed to be hitting the side of your thigh, but she has chosen her belly so we accept it but keep showing her that it should be down on her thigh. She gets so excited when she signs it and we say dog! It's clear that she is putting two and two together. Now we just need to start teaching her more and more signs. I just learned the sign for music and so I'm starting that with her. Continuing to work on milk or drink as neither of those have been picked up yet. She does the sign for milk, but never when she means milk.
She has expanded her babbling sounds and will now babble quite regularly. I don't think she has said mama or dada specifically yet, but I swear that she is getting REALLY close if she isn't actually doing it yet. Tonight she was sitting on me half asleep and she just looks up at me with those gorgeous blue eyes and says mama in a half asleep voice and I almost started to cry. The reason I'm still not giving her credit for it is she immediately continues it with mamama and other sounds, but for a split second I thought we had it! She used to not speak in front of most people, but she is getting much more vocal regardless of who is around. The OT therapist at our local DS support group play date today was commenting on how well she expresses herself and interacts with those around her and another of the mom's pipes in with something about how Sweet Pea is extremely opinionated and isn't afraid to let it be known. I laughed because it is so true! This little girl will quickly let you know what she is thinking one way or another! When words do start coming they might be fast and furious and they might not be the words I'm hoping them to be. I can see NO being yelled at me in the not so distant future and many others that are even worse.
Eating: Sweat Pea doesn't like to eat for her parents. She continues to eat much better for daycare than she does for us. We keep saying that it is a good thing that she is at daycare more than she is at home! We have reverted back to giving her things that require chewing because she isn't open to the therapy method of getting her to learn to chew and so our only hope is to practice with real food which she is definitely willing to do. She loves veggie sticks, Kix cereal, baby goldfish, bread (we made breadsticks out of whole wheat pizza dough, but any bread will do), cake, cooked pasta with olive oil drizzled over it (anything to add a little healthy fat to her diet) and anything else carb based. She will tolerate many of the stage 3 baby foods and is starting to want to eat what we eat. With her dietary restrictions it makes things hard, but we do the best we can. She is back to eating soy and so we have her on soy yogurt many days which she seems to think is okay, not great but edible.
She is on the straw #2's in Sara Rosenfeld-Johnson's straw hierachy (www.talktools.net). She does pretty well with them, but boy are they a pain to clean. She also needs to put more than 1/4 inch of it into her mouth so we are working on improving that part.
Weight: She weighed 21 lbs 6 oz the other morning on our home scale!!!!! I'm anxiously awaiting our next doctor visit next Thursday for an official weight, but I'm optimistic that she will be in the mid 21's! She will finally be graduating from her infant carrier car seat into a convertible car seat (the kind that can face backwards and then when they reach 35 lbs or 2 years you can turn them around and use them forward facing). We don't know how long we will keep her rear facing for. It's safer to have them that way so I will try to do it for a long time, but 35 lbs could be 10 more years! Alright, not really, but it could be a VERY long time.
Therapy: Sweet Pea is currently getting 7 therapies a week! She has 2 PT, 2 OT, 2 Speech and 1 Infant Stimulation/Development. Between those appointments and her doctor appointments this is one busy little girl! She handles it all very well and we are pleased that most sessions of PT are no longer crying fits and I could not be happier that we FINALLY made the switch of PT's a few months back now. I'm not thrilled about our speech therapist, but since it is the only one within a reasonable distance, I'm "sucking it up". It takes us 20-25 minutes to get to speech which is annoying, but far better than the hour plus that it would take to get to the valley which is where the insurance company is telling me my only other choice is! We are hoping that Daddy's insurance will bring us some new options in January, but until then we are just doing the best we can.
Toys: Her favorite toys at the moment are:
1) the Fisher Price Ocean Wonders Soothe and Glow Seahorse that lights up and plays music (I know...shocker that she likes something that lights up and plays music...but she actually was afraid of this for a little while and now she just adores it).
2) Next would probably be the Fisher Price Laugh and Learn Say Please Tea Set that has a tea pot that sings and makes sounds when you open/close the lid and tip it over (she bangs this thing on the floor and unfortunately into Daddy's face and we are hoping she stops before he loses any teeth).
3) plastic water bottles...empty or full or somewhere in between are all just as good...don't know why she is so fascinated, but I love it because we normally have a water bottle accessible.
4) This is more of a game than a toy, but in the morning when Daddy is getting ready to take her to daycare I say goodbye and then she reaches for Daddy, when he has her then she reaches for me again. This used to just be a Mommy - Daddy - Mommy - Daddy move, but now she is wanting to go many more rounds and will even do fake outs on some of the transfers! It's very funny! The sad part is that when Daddy takes her out the door she has started to get a little upset. It doesn't last long, but it makes me sad to see her upset to leave me (but it also makes me so happy because she really does love me).
5) I am not sure this one counts, but her all time favorite toy right now just might be the bathtub...yep...that is right...the bathtub. Now it has to be filled with warm water for her to enjoy it, but when it is, boy does she love it! The squeals that come out of her when she hears the water running and we say/sign bath. I wouldn't be surprised if that is one of her next signs! This was the first place that she wanted to show off her new skill of pulling to stand and I think she is getting better at just kneeling in the tub as I don't want her to be standing for her own safety. She slipped once and wasn't too happy about it, but of course it didn't teach her so I'm trying to just keep her on her knees and tonight it went pretty well. Here is the proof...
Sweat Pea-isms: Her current signature move is this motion of putting her arms up in the air as in "who me?" or "I don't know" (without the shoulder shrug). We get comments all the time from people that see her doing this and think it is just the cutest thing. I can't argue! I don't think I've ever captured it on film so I will try to do that before it becomes a thing of the past for her.
Sleep: This is an area that has gone downhill. She still goes to bed at 7pm, but now she not only wakes up for her twilight feed sometime between 9 and 10:30, but now she wakes up anywhere from 1 to 3 times during the remainder of the night as well. She doesn't seem to need anything, but Daddy turns the seahorse toy on and she quiets right down again. Many times she doesn't even seem really awake. I wish I understood what was causing this or how to stop it. Maybe we need to just not go in there and let her cry it out? Daddy is really nice to me as he is a lighter sleeper and so he often gets up to deal with her and lets me keep sleeping (thank you Daddy). To top all the middle of the night wake ups, she is now also waking up closer to 5:30am! 6am was okay, but 5:30 is just too darn early! We normally ignore her until 6, but with the stunt she pulled this morning I'm not going to feel safe ignoring her until we get the net installed over her crib.
Overall Health: Sweet Pea has actually been VERY healthy recently!!!! (Knock on wood!!!!) She hasn't had a cold or a fever or anything in at least a month! This is so rare that we are really enjoying it. I know that cold and flu season is right around the corner, but I hope that it takes it easy on Sweet Pea this year. (As I was wrapping up this blog post Sweet Pea starts coughing in her sleep! Hope it is just a fluke!)
I apologize for this being such a long post, but since I haven't done a birthday post in a few months I wanted to make sure that I captured most of the highlights. Sweet Pea is becoming more of a little girl with her own personality every day and although it might drive me batty sometimes, I truly do revel in it and I love the little girl she is becoming. Her smile still melts my heart.
Thursday, August 26, 2010
Another great article
I was planning on posting the article below, but then came upon this video news clip (thanks Meredith) that I couldn't resist sharing too:
This is a great article (thanks Renee) about not accepting the limitations that we and others put on our kids. "Expect. Don't accept."
This is a great article (thanks Renee) about not accepting the limitations that we and others put on our kids. "Expect. Don't accept."
Paul Daugherty's 2009 Keynote Address at the Remarkable Families Symposium should be required reading for all who work with children who have special needs...including parents!
It's a great reminder to "Expect. Don't accept."
Mr. Daugherty has a daughter with Down syndrome. Here are a few excerpts from his keynote address, but you really should read the whole thing.
People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.
We never say never. Never is not a word. It's a self-defeating state of mind.
It's a great reminder to "Expect. Don't accept."
Mr. Daugherty has a daughter with Down syndrome. Here are a few excerpts from his keynote address, but you really should read the whole thing.
People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.
We never say never. Never is not a word. It's a self-defeating state of mind.
We have to change the way people think before we can change the way they act. Altering perceptions is like breaking a stone with drops of water. It can be done, if you're willing to take the time.
And a reminder for parents:
All any of it required, at base, was a disbelief in limitations. She can't learn? No, you're not willing to let her try. As parents, we cannot let that go unchallenged, not ever. We owe our kids that much. Expect, don't accept.
Do not give in to those who would ignore their better natures, because it's easier to retain a stereotype than change it. Change requires work, but it's the only way we improve as human beings. When people resist change, protest. Scream real loud. Give 'em hell. Don't let them tell you what your kid can do. Expect, don't accept.
Wednesday, August 25, 2010
New Parents should read this
I have been doing a lot of thinking since our local DS support group meeting last Wednesday night. You see, this meeting had a very small turn out of only 6 families total, and yet 2 of those were new families. And I mean NEW! One husband and wife have a 4 week old little girl (saw a photo and she is just precious!) and another gal was there with her 3 week old little boy. I was lucky enough to actually hold this little boy and my goodness did it feel like forever since Sweet Pea was that size! He was so sweet and just slept so peacefully in my arms. Anyway, back to the point...having these new families there caused the conversation to be very different than in recent meetings when we haven't had new families. We were there to answer any and all questions that these new families had and they had a lot of great questions. Sitting there talking with them it started to dawn on me...that was me 15 months ago when I attended my first meeting! I was the one super nervous about what were therapies like, what was the future going to be like for our children, how did we speak about it, etc. Now I was actually the one helping them know that everything was going to be okay.
I have often felt that on the road to total acceptance I am probably at 70% or 80%. I have felt that I've been stuck at that spot for the past 9 months. Wednesday night made me realize that either I wasn't at 70% 9 months ago yet or I'm now at 90%! It was amazing to be able to honestly tell these new families that everything really would be okay. One gal was funny and shared that when she tells people about her son they try to immediately tell her that it will be okay. She says, "yes, it will, but it still SUCKS". It made me laugh because I felt the same way that she does in that I knew deep down that it would eventually be okay, but having a child born with a disability does suck in that it wasn't what you were anticipating and didn't fit the picture of the perfect child in your head. However, today I don't feel the same level of suckiness (new word) when I think about Sweet Pea's diagnosis. I still wish that she didn't have DS because it would make her life a lot easier (and heck, ours too), but I know that she wouldn't be the same adorable little girl if she didn't. I do believe that the extra chromosome had a major impact on her personality and not just her cognitive and physical attributes. She probably would have been adorable in her own right if she were typical, but she would definitely be different and this particular little girl has stolen my heart completely. I remember not feeling very connected to her for many, many months. I worried that I never would feel for her as I expected to feel for a daughter. I don't know when it happened, but that has definitely changed and I couldn't be happier about it! She certainly deserves a mommy fully in love with her and heck, I deserve to have a daughter that I love so much that I would do anything for.
Here is a very sad secret that I will share...there were many times in those early weeks and months that I actually wished that she had some serious illness that would take her from us! Now just thinking that thought makes tears stream down my face (I need a waterproof keyboard), but I did have those thoughts at times. Just having those thoughts made me feel like the worst mother ever, but I couldn't change that I had them and I just tried to be honest with myself about them. Now I would fight to my death to keep her from anything that might take her from us! Back then I hoped that this day would come, but I honestly had no idea if it would. I am so elated to be able to share that I felt that way because there is no way that I would have shared that if I felt that way at all anymore.
16 months and I'm still not 100% there, but wow, I'm still making good progress! It took these new parents to be so open to sharing their fears and concerns for me to realize that I am not there anymore.
To any new parent that might be reading this, have faith that it really will get better and easier.
I have often felt that on the road to total acceptance I am probably at 70% or 80%. I have felt that I've been stuck at that spot for the past 9 months. Wednesday night made me realize that either I wasn't at 70% 9 months ago yet or I'm now at 90%! It was amazing to be able to honestly tell these new families that everything really would be okay. One gal was funny and shared that when she tells people about her son they try to immediately tell her that it will be okay. She says, "yes, it will, but it still SUCKS". It made me laugh because I felt the same way that she does in that I knew deep down that it would eventually be okay, but having a child born with a disability does suck in that it wasn't what you were anticipating and didn't fit the picture of the perfect child in your head. However, today I don't feel the same level of suckiness (new word) when I think about Sweet Pea's diagnosis. I still wish that she didn't have DS because it would make her life a lot easier (and heck, ours too), but I know that she wouldn't be the same adorable little girl if she didn't. I do believe that the extra chromosome had a major impact on her personality and not just her cognitive and physical attributes. She probably would have been adorable in her own right if she were typical, but she would definitely be different and this particular little girl has stolen my heart completely. I remember not feeling very connected to her for many, many months. I worried that I never would feel for her as I expected to feel for a daughter. I don't know when it happened, but that has definitely changed and I couldn't be happier about it! She certainly deserves a mommy fully in love with her and heck, I deserve to have a daughter that I love so much that I would do anything for.
Here is a very sad secret that I will share...there were many times in those early weeks and months that I actually wished that she had some serious illness that would take her from us! Now just thinking that thought makes tears stream down my face (I need a waterproof keyboard), but I did have those thoughts at times. Just having those thoughts made me feel like the worst mother ever, but I couldn't change that I had them and I just tried to be honest with myself about them. Now I would fight to my death to keep her from anything that might take her from us! Back then I hoped that this day would come, but I honestly had no idea if it would. I am so elated to be able to share that I felt that way because there is no way that I would have shared that if I felt that way at all anymore.
16 months and I'm still not 100% there, but wow, I'm still making good progress! It took these new parents to be so open to sharing their fears and concerns for me to realize that I am not there anymore.
To any new parent that might be reading this, have faith that it really will get better and easier.
- Give yourself time to adjust to the diagnosis and how it will impact your life. It will impact your life, there is no way around it! But it isn't a fraction as bad as I imagined initially.
- Give yourself time to grief the loss of the child that you thought you were going to have. I am sure there are some people out there that have always hoped that they would have a child with DS because they knew someone very dear to them with DS, but I certainly didn't and I had 31 years of picturing my children in my head and Sweet Pea is not what I pictured even once. To grieve that loss is natural and actually healing. Here is a great article that I posted in a prior post: http://www.pediatricservices.com/prof/prof-15.htm
- Get involved with a local DS support group or make virtual friends with a DS mommy via blogland. Blogs have provided me an amazing glimpse into others homes and I believe played a huge role in my progress. Through blogs you can see older children with DS doing many of the things that I feared my daughter would never be able to do. Through blogs you can meet other kids around your child's age and see how they handle issues and share successes. However, be careful that you don't read blogs of children with severe medical issues early on. Even typical kids can have serious health issues, but you don't need to be fighting more battles emotionally and I know with me, if I read about someone else's problems, I spend time worrying about them. Stick to the healthier blogs at least until you get your feet under you.
- Give yourself the space to feel negative thoughts. Maybe journal or share them with a very close friend. This blog was my attempt at getting feelings off my chest and the funny thing is, I think I started to feel better about Sweet Pea when I started this blog. It gave me a forum to share all that I do love about her. I started looking for positive things to share with family and friends and those new friends from blogland. A blog isn't for everyone, but even a weekly letter to a distant relative might give you the same push that this did for me. But allow yourself to feel the wide variety of feelings that you might be feeling.
- If you already feel pretty good or even better, congratulate yourself! Don't worry if you feel like you fall backwards a bit at times because it is very normal.
- Congratulations on your new baby!!!!! I couldn't hear those words without cringing for a long time, but you deserve congratulations because your baby truly is a very special baby and you will love him/her with all your heart soon enough.
Monday, August 23, 2010
Fun with Sweet Ella Grace!
I know...you guys are all jealous again...but I have now gotten to hang out with Ella and her mommy Denise now twice and this time Sweet Pea was able to join us! She finished her 3rd round of chemo while I was there so they are almost halfway done now and Ella is doing amazing. She is such a joy to be around! I took a ton of pictures in hopes that a few of them would be cute of both of them, but those little stinkers wouldn't both look cute at the same time for anything! I did end up with a lot of cute pictures, but not the drop dead adorable ones that each gives individually. Oh well...
Warning...picture overload...and I have no idea why all the comments are from Ella's perspective. I think she just shows a lot more emotion on her face and was definitely the one calling the shots between the two of them.
Who is this little girl invading my room?
Oh no! She is moving towards me now! Mommy, this is not cool!
If she is going to be in my room I better check her out a little:
Sweet Pea isn't so bad after all!
Want to play with my ball?
Sweet Pea is starting to cramp my style...can I move farther away without really moving?
Silly little baby, it's not that crazy when you only hold on with one hand. See, I can do it.
See, this is how you do it. Look a little more confident and you will fool them all.
You don't listen very well! If you are going to cry you are going to have to leave my crib!
Mommy, I'm being very nice by letting her stay, but I am warning her, if she pulls that again...
I'll just hang out in the back and let the crazy baby do her thing. I'm cool enough to handle it.
Sweet Pea is quite cute. Maybe I'll give her another chance to be my friend.
Aren't we studious little ladies?
This baby is never going to learn to read a book...you hold the book straight and read it...simple as that
I give up...
What a good book stand you make Sweet Pea!
See, this is how you read it. Finally you got it! My job is done.
We hope to visit them again sometime soon! Thanks for letting us invade your room and helping to make a complete mess of the place! We pray that this round and the next 3 continue to go smoothly!!!!
Warning...picture overload...and I have no idea why all the comments are from Ella's perspective. I think she just shows a lot more emotion on her face and was definitely the one calling the shots between the two of them.
Who is this little girl invading my room?
Oh no! She is moving towards me now! Mommy, this is not cool!
If she is going to be in my room I better check her out a little:
Sweet Pea isn't so bad after all!
Want to play with my ball?
Sweet Pea is starting to cramp my style...can I move farther away without really moving?
Silly little baby, it's not that crazy when you only hold on with one hand. See, I can do it.
See, this is how you do it. Look a little more confident and you will fool them all.
You don't listen very well! If you are going to cry you are going to have to leave my crib!
Mommy, I'm being very nice by letting her stay, but I am warning her, if she pulls that again...
I'll just hang out in the back and let the crazy baby do her thing. I'm cool enough to handle it.
Sweet Pea is quite cute. Maybe I'll give her another chance to be my friend.
Aren't we studious little ladies?
This baby is never going to learn to read a book...you hold the book straight and read it...simple as that
I give up...
What a good book stand you make Sweet Pea!
See, this is how you read it. Finally you got it! My job is done.
We hope to visit them again sometime soon! Thanks for letting us invade your room and helping to make a complete mess of the place! We pray that this round and the next 3 continue to go smoothly!!!!
Saturday, August 21, 2010
Random Catch-up
I've been neglecting this blog more than I should and so now it's time to catch you up on some of the photos and videos from the last few weeks.
As I mentioned in yesterday's posting, Sweet Pea likes to climb out of her high chair now. I wasn't able to capture it on camera yesterday because I really am not that bad of a mommy. Today though Daddy was able to capture her while I played the role of spotter. We really will start strapping her in...I promise! I just forgot and then it was too cute not to get on film. Enjoy the series:
A few weeks ago:
Gotta love summer with Concerts in the Park! I wasn't allowed to wear my hat because Sweet Pea thought it looked better on her...which it did:
This toy is a little big for her still, but we had to give it a shot. Don't let the smile fool you, she actually didn't enjoy it for long. It might be a few years before her feet can actually reach the pedals.
She likes the bell though!
Last weekend:
A glimpse into Daddy's future with two adorable girls to entertain:
Another Concert in the Park...this time with a Neil Diamond tribute band! Gotta start them loving Neil from a young age like my mom did with me! I need to explain these photos...besides being cute they also show a first for Sweet Pea. I always see pictures of little ones crashed out where ever they were playing and wondered if Sweet Pea would EVER do that because she normally just starts to cry and whine when she gets tired. The concert ran right up to her bedtime and Sweet Pea was definitely tired by this point and so she actually laid down next to me! By the time Daddy got the camera out she decided it was time to do some stretching before bed, but it was as close to sleeping as we have come yet. Maybe one of these days we will find her asleep surrounded by her toys.
Video of our little jumping bean from 7/30/10:
On her 16 month birthday (7/29/10) she learned how to make her circle-of-neglect play music and you have to love the smile she gets when the music actually starts! When you hit the duck button in the center it plays a duck sound, hit it again and it says duck, hit it again and it says pato (duck in Spanish) and then if you hit it a 4th time it will play the music. She only does the center one, but since she is hardly ever in the circle-of-neglect that isn't too bad.
As I mentioned in yesterday's posting, Sweet Pea likes to climb out of her high chair now. I wasn't able to capture it on camera yesterday because I really am not that bad of a mommy. Today though Daddy was able to capture her while I played the role of spotter. We really will start strapping her in...I promise! I just forgot and then it was too cute not to get on film. Enjoy the series:
A few weeks ago:
Gotta love summer with Concerts in the Park! I wasn't allowed to wear my hat because Sweet Pea thought it looked better on her...which it did:
This toy is a little big for her still, but we had to give it a shot. Don't let the smile fool you, she actually didn't enjoy it for long. It might be a few years before her feet can actually reach the pedals.
She likes the bell though!
Last weekend:
A glimpse into Daddy's future with two adorable girls to entertain:
Another Concert in the Park...this time with a Neil Diamond tribute band! Gotta start them loving Neil from a young age like my mom did with me! I need to explain these photos...besides being cute they also show a first for Sweet Pea. I always see pictures of little ones crashed out where ever they were playing and wondered if Sweet Pea would EVER do that because she normally just starts to cry and whine when she gets tired. The concert ran right up to her bedtime and Sweet Pea was definitely tired by this point and so she actually laid down next to me! By the time Daddy got the camera out she decided it was time to do some stretching before bed, but it was as close to sleeping as we have come yet. Maybe one of these days we will find her asleep surrounded by her toys.
Video of our little jumping bean from 7/30/10:
On her 16 month birthday (7/29/10) she learned how to make her circle-of-neglect play music and you have to love the smile she gets when the music actually starts! When you hit the duck button in the center it plays a duck sound, hit it again and it says duck, hit it again and it says pato (duck in Spanish) and then if you hit it a 4th time it will play the music. She only does the center one, but since she is hardly ever in the circle-of-neglect that isn't too bad.
Friday, August 20, 2010
Busy Day
Sweet Pea has only been home for 90 minutes, but she has shown me a number of new tricks this evening.
- Sweet Pea had a new tooth break through! Her top left tooth finally broke through and it looks like it might be another that is regularly shaped too!
- Sweet Pea has been doing a little bit of actual crawling for a week or so now, but by a little I mean she takes one or two very slow motions in the quadruped position forward. I guess even that is an overstatement because most of the time her right leg was straight and only her left knee was bent on the ground. But it was becoming very common for her to move a foot forward to get something close in this position. Anything farther than 1-2 feet was achieved by her fully developed fast army crawl. The true crawling was what I was considering an emerging skill. Tonight however, she showed me at least 3 different times that she may not be crawling...ever. It appears that she has decided that she wants to be a bear instead and crawl up on her hands and feet. She did one crawling motion in the quadruped position and then popped up on her feet and went a couple more motions. I'm guessing the PT won't be thrilled about this new development, but it is what it is. I'm just glad that she is deciding that it is worth the effort to move! After being content to sit there for hours on end (with a fair amount of whining too) for months and months and months...this is great!
- I left the phone on the floor and next thing I hear is her daddy's voice on the other line. It was his voicemail so she left her first voicemail. I thought that it was his cell phone, but when he got home and didn't have a message I realized that it was probably his work line so he will have a cute message to start his day on Monday.
- During dinner Sweet Pea showed that she is related to her monkey cousins. A quick bit of back story...Sweet Pea has not been happy eating dinner (or most meals) recently and so in our attempts to have her be willing to eat anything, we have allowed her to not be strapped in because it meant that she would eat a little more. She loves to stand up in her chair and since we don't leave her, we let her do it and tell her to sit down and she normally listens to us. She enjoys the ability to stand up, even if it is just for a second. Being strapped in doesn't allow this and she gets so mad about it. So, tonight she was sitting in her chair and wanted to reach something that was on the table next to her. It was out of her reach even when she was standing so this little monkey decided to put her leg up onto the tray of her high chair! I think my time of allowing her to be unstrapped has come to an end! She did this new trick at least 2 different times and I quickly got her back into the seat, but each time my heart skipped a beat.
- We have one of those ball popper toys that the balls shoot out of and are supposed to go back down this slide and into the machine again. Ours just got new batteries so the balls go flying across the room more often than they stay in the slide. She used to just laugh at them, but tonight she kept taking off charging after the stray balls and throwing them back at me. I loved it!
Thursday, August 19, 2010
Stomach Emptying Scan
Today Sweet Pea went to Children's Hospital to have a stomach emptying scan done. The GI (and we) believe that her stomach probably doesn't move food as quickly as it should. This is what causes her to spit up hours after eating and the food is still fully recognizable. So this test was just to confirm that and see how bad the situation is. We won't know the results for 2 weeks when we go in to see the GI, but Sweet Pea gets an A+++ for her performance today! She woke up at 5:15 which wasn't a good start. She was in a great mood already as she was kneeling at the side of her crib waiting for me to come back in the room. I got her back to sleep by her sitting in my lap in the rocking chair until about 6:30. We were on the road at 7:30 to pick up Grandma and head up to the hospital. We are so lucky that Grandma is retired and so willing to give up so much of her time for her little granddaughter! Grandma was a necessity today because to do the study they have Sweet Pea ingest radioactive stuff and I couldn't be anywhere near it or her. We get to the hospital, check in and play in the waiting room for a few minutes. Sweet Pea will not sit still anymore. She was bouncing back and forth between me and Grandma, but happy the entire time. We were called back about 8:45 and the nurse explained the procedure, I helped get the food setup (without the radioactive part) because they were going to take a portion of the food and put the radioactive stuff in it and have her eat that first. Then if she is still hungry and willing to eat then they would give her more food without anything radioactive added. She had 10 minutes to eat whatever she would and then they were going to strap her down and take pictures of her stomach for the next 90+ minutes. I kiss Sweet Pea goodbye and wish Grandma luck and leave. Yes, leaving was hard, but I knew that she was in great hands. I hang outside the room and can hear a little when I put my ear up to the door...I'm sure I looked funny to anyone walking past, but I didn't care. The feeding is going well and since she hadn't eaten since 10pm I wasn't really surprised. The fact that she wasn't fussing at all since she had gotten up was surprising as heck, but a welcome surprise. When they finished the food Grandma kept her upright for as long as they would let her and then put her down on the bed and began the process of strapping her in. They don't mess around with this part! Sweet Pea wasn't going anywhere as you will see below. She handled being restrained like a champ and with a little singing from Grandma, Sweet Pea fell asleep. That made the first hour of the procedure very easy for everyone involved. I got a call from Grandma with an update and was able to peek my head in to see it for myself. She was laying there straight as a board with even her head straight up when I saw her. It was hilarious and yet sad at the same time!
Here she is sleeping with the big camera over her taking pictures:
This is a wider shot to show the computer that was counting down the time remaining for the test and the right hand screen was where the stomach pictures were being seen. It definitely wasn't easy to see what was going on, but Grandma said she could see things definitely going on in there.
When there were about 30 minutes left in the test Sweet Pea woke up and so Grandma got to entertain her and keep her happy. That isn't an easy task when she is free to do what she wants, much less when she is wrapped up tighter than a mummy! Grandma did an excellent job though and I could hear Sweet Pea blowing raspberries and "talking" through the door. Apparently she learned a bit about pop culture because Grandma had found an old People magazine in the room while she was sleeping. She also had some finger play and songs sung and finally watched some Baby Einstein video. She would look at Grandma with her big blue eyes that seemed to say, "What are you doing to me?" but didn't protest about it. Amazing and I'm so glad that Grandma was able to be there with her to help her through the strange experience.
Here is a photo of her awake and wondering what is going on:
We will let you all know the results in two weeks after our visit to the GI. We see the GI and ENT that same day so hopefully there won't be any major news to share, but we will share what there is to share.
Here she is sleeping with the big camera over her taking pictures:
This is a wider shot to show the computer that was counting down the time remaining for the test and the right hand screen was where the stomach pictures were being seen. It definitely wasn't easy to see what was going on, but Grandma said she could see things definitely going on in there.
When there were about 30 minutes left in the test Sweet Pea woke up and so Grandma got to entertain her and keep her happy. That isn't an easy task when she is free to do what she wants, much less when she is wrapped up tighter than a mummy! Grandma did an excellent job though and I could hear Sweet Pea blowing raspberries and "talking" through the door. Apparently she learned a bit about pop culture because Grandma had found an old People magazine in the room while she was sleeping. She also had some finger play and songs sung and finally watched some Baby Einstein video. She would look at Grandma with her big blue eyes that seemed to say, "What are you doing to me?" but didn't protest about it. Amazing and I'm so glad that Grandma was able to be there with her to help her through the strange experience.
Here is a photo of her awake and wondering what is going on:
We will let you all know the results in two weeks after our visit to the GI. We see the GI and ENT that same day so hopefully there won't be any major news to share, but we will share what there is to share.
Wednesday, August 18, 2010
Nearly Wordless Wednesday: Water Table
We bought this water table at a garage sale with the main purpose of it being to get Sweet Pea to practice standing. Seems like it works! Now we just have to remember to use it!
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