I wrote this yesterday and then never posted it oh well, here it is.
Thought it was time for another update, the last week has been good. First we stared trying to get him to use a straw. I bought a cup where you squeeze the cup to get the liquid to go up the straw. So he learned that he gets liquid through the straw. After doing that a few times he actually sucked juice up the straw! So I tried a regular straw cup and he got it! He can now suck through a straw! This is a huge milestone. Straws are very good for oral motor development, help strengthen his facial muscles and get him to use muscles he hadn't used before.
Another thing we decided to try working on again was getting him to feed himself with a spoon. In the past whenever I had done this he had gotten upset and sometimes didn't even want to finish whatever he had been eating. So we tried it at OT, she handed him the spoon and he grabbed it with his left hand and fed himself! He knew just what to do, to dip the spoon in the yogurt cup and put it to his mouth. Like he had always been doing this. I LOVE it when he surprises me like this! He doesn't always want to do it but he CAN do it so we just have to keep encouraging him.
Earlier this week we went to the AAC (Augmentative & Alternative Communication) Resource center. The reason we got the iPad for Joshua was so that one day he would be able to use it to communicate. So I wanted some guidance with choosing an app or something else to get him started learning to communicate with something. She gave us lots of great information and she was very positive about Joshua's ability to learn to communicate! I love hearing positive things about him especially from a professional (she is an SLP - speech language pathologist who specializes in AAC). She was not very positive about the iPad though, she thinks our best bet is to go with something low-tech. I did mention an app I've been looking at and she e-mailed me later on about it and said that looked like a good possibility. She also gave us a photo book that we could fill with photos and picture cards. The app is Verbal Victor, if you know anything about it or have any other suggestions I would love to hear them!
Last night was the Christmas Party at Joshua's preschool. They had one last year too but we didn't go because it's so late, it was late this year too but we went anyway. It's from 6:30 to 8:30, we left around 8 and Joshua didn't fall asleep until after 9 but he had a great time! It was a rough start. We got there right at 6:30 but very few people were there, his teachers were there but not many guests had arrived yet. Joshua got a pouty face and then started crying. So we took him outside to calm him down. When we came back in lots more people had arrived with their kids so Joshua was happier. He loved watching them all run around and trying to chase them. He ate and ate and ate! He even sat on Santa's lap for a few seconds! Long enough for one of his teachers to get a photo and she got a good one! Of course he was smiling at his favorite teacher, she got him to sit still and smile for a minute, he has good taste as she is young and pretty she's even a ballet dancer! He flirted with her all night!
Friday, December 16, 2011
Thursday, November 24, 2011
3 Years
Earlier this week Joshua turned 3. It was a bit bittersweet. He is growing older but in many ways he is still like an infant. He is making progress in all areas, slowly but surely but I fear every year he gets older will be a little bittersweet. He's no longer considered a baby, of course he will always be my baby but he still needs me as much as ever. I know I could sugar coat it but I'm not going to. I love him of course but it doesn't make it any easier when he has a birthday and still has so far to go. I wonder if the pain will ever go away, if I will ever feel better about where he is. I worry about the future, every day I worry about it. I try to take one day at a time but I still worry. I am so very proud of him, he has come so far and works so hard for each and every inchstone and milestone. Things the rest of us take for granted. So on this Thanksgiving I will do my best to be thankful that Joshua is healthy, so very healthy and is beating the odds right there. That he is walking! That he is making progress. I know it could be worse and I try to remember that every day. So as you eat your turkey or whatever you will be eating this Thanksgiving. Please be thankful. If you have children who are "typical" please be thankful for that.
Sunday, October 30, 2011
Photos!!
I acknowledge that I am a bad blogger. I really prefer to read other blogs but I just started following a new blog and the author acknowledged me being a new follower of hers by saying that Joshua was gorgeous! I told her thank you more than once and decided that it was time to update with some new photos of my gorgeous son!!
Today we went to have photos taken since his going to be 3 next month! How the heck did that happen? So now that he's walking he just did that, walked everywhere, sometimes tried to run away from us and from the photographer especially. We hope she got some good ones, she did a good job he was just uncooperative. Had she had a video camera it would have been fine. :)
Not much news, his birthday party is in less than 2 weeks! We did decide to keep him at his current preschool because we love it so much. So for the rest of the school year that's where he will be. He is doing really well, not much new since my last post but he has been healthy. I realized again how lucky we are that he is so healthy, he has not had an ear infection or really any other kind of infection (that we know of) since his last birthday! Without further ado here are some photos from the last year.
These are totally out of order but I don't know how to fix it so I am not going to mess with it. The two beach photos are from May/June of this year, he loved the ocean this year and even put up with walking on the sand. The playground photos are from January/February of this year. The other photo is from our most recent vacation this month to Gatlinburg and was taken at the aquarium in the play area where we showed him how to pull the handle to see the light and then all he wanted to do was pull the handle.
If you are interested in seeing more I post all my photos to Facebook so look me up there.
Today we went to have photos taken since his going to be 3 next month! How the heck did that happen? So now that he's walking he just did that, walked everywhere, sometimes tried to run away from us and from the photographer especially. We hope she got some good ones, she did a good job he was just uncooperative. Had she had a video camera it would have been fine. :)
Not much news, his birthday party is in less than 2 weeks! We did decide to keep him at his current preschool because we love it so much. So for the rest of the school year that's where he will be. He is doing really well, not much new since my last post but he has been healthy. I realized again how lucky we are that he is so healthy, he has not had an ear infection or really any other kind of infection (that we know of) since his last birthday! Without further ado here are some photos from the last year.
These are totally out of order but I don't know how to fix it so I am not going to mess with it. The two beach photos are from May/June of this year, he loved the ocean this year and even put up with walking on the sand. The playground photos are from January/February of this year. The other photo is from our most recent vacation this month to Gatlinburg and was taken at the aquarium in the play area where we showed him how to pull the handle to see the light and then all he wanted to do was pull the handle.
If you are interested in seeing more I post all my photos to Facebook so look me up there.
Sunday, September 18, 2011
Injustice
I can't stand injustice. I don't want to be a part of it and worse I can't stand to sit idly by while the person who should do something does nothing. Joshua has enough working against him, he fights enough battles, he shouldn't have to fight this one. When you stop doing something you've done for a long time why can't the other people step up and do it? Why do some people get everything handed to them on a silver platter while others have to fight tooth and nail for everything and sometimes still not get it? I know life isn't fair, but does it have to be this unfair, this unjust? I know I deserve better, I know Joshua does too but if I say anything to anyone then I'm the bad guy looking for trouble. I'm just supposed to sit idly by and do nothing and that is very difficult for me. It's down right depressing.
Monday, August 22, 2011
Joshua's Transition Meeting
Last Thursday we had Joshua's transition meeting. We brought him with us since his EI (early interventionist) had said that he would be in one room getting an evaluation while we were in another. Well it turned out they didn't evaluate him, she said later that now they are only doing that for children on the cusp, who may or may not qualify for services. So we were in this tiny little room with only a round table and chairs around it and Joshua hated it, I'm not sure how much I heard, I mostly had to deal with him and eventually went out into the waiting area to get him a toy which calmed him down.
Basically the meeting was about us signing papers and for us to ask any questions we had. They provided very little information when we did ask questions. The woman who ran the meeting is the psychologist who it looks like is in charge of special education for all of our school district. I went to a mom's night out on Saturday and met with some other moms who had children in special education in our school district and they too deal with this woman, most did not have good things to say about her it seems she is rather inflexible with her rules. I am not looking forward to having to deal with her and frankly why would I want to start now if I don't have to? She has a big fake plastic smile and was very fake with us, smiling her fake smile the whole time she talked to us. Saying things like well he would go to school 5 days a week (he goes 2 days a week now to the program he attends). Yeah, we know that already.
So we go to leave and have to make an appt. for a hearing & vision screening, supposed to be later on this week. We make the appt. and leave. Talking on the way home and thinking about it more, why do we have to do this when we're not sure we are even putting him in the program at 3 or later on in the school year and I find out from the EI if he doesn't go now or sometime during the year we will have to repeat the hearing & vision screening as it is only good for a year. So why am I doing it now when we haven't decided if he's going?
Why am I hesitating? Joshua goes to a wonderful preschool program right now that he can continue to go to until he turns 5 if we want. It is the only one in our area and through word of mouth has become full this year. I learned about it through our local organization for families with children with special needs (who sets up our mom's night out and other events) Family Connection. I was assigned a parent through their support group and she told me about it, turns out she lives just blocks away from the preschool. It is for children with and without special needs, so he goes to school with typical developing children as well as children with a range of disabilities. There is no formal IEP (Individualized Education Plan) which he would get before he got into the school district's program. Yet we do have an individualized plan with goals and it is much easier to change and it is followed. There is one head teacher and 2 other teachers plus an aide and at most there are 9 kids in the class. The teachers love their jobs and care about the children, you can tell, it is a wonderful loving environment. Joshua is happy there! Sure it took some time to get him adjusted but he loves going to school and being there! What more could I want?
The school district's program is strictly for children with special needs/disabilities. There are no peer role models (typically developing children) such as he has now at his school. He would have to have an IEP right away. There is only 1 teacher and 1 aide for each class, the class size is the same (although at his school there are rarely 9 kids in the class and he does get individual time). He would most likely get group therapy, not individual therapy like he gets at home and in clinics he goes to. He could still get outside therapy though but he would be going to preschool 5 half days a week (we would want mornings, he goes in the morning now and he naps in the afternoon). I take him an hour + each way to OT/cranial sacral therapy now on Monday mornings, not sure I could take him out of preschool to do that if I did he would only go 4 days a week. I have no idea what we would do with him in the summer. At his current school they are only out 2 weeks at a time, in the summer it is for only the last 2 weeks in July.
So I told the EI that before we set up any more evaluations (they want to do hearing & vision right away and a psych evaluation) I'd like to see a classroom. The psychologist said she couldn't just show us a classroom, she would need to see where he would fit and then she would show us that classroom but in order to do that she needs to know where he would fit so we have to do the hearing & vision eval and a psych eval. But if he doesn't end up going we have to do those evals all over again and possibly others (they want current OT, PT & speech evals from the past year) before he attends. We have the OT & speech, have to get the PT but we would have to get them all over again next year if he doesn't go this year and if we didn't have them they would do their own.
I want to see the environment because frankly they have a lot to live up to to be anywhere close to where he goes now. I can tell they are not going to make it easy for us to do this. The psychologist told the EI that we should call her ourselves, I do not think she will be any more flexible with us. You may think just do what they ask but you don't know Joshua very well. He will fight the hearing & vision screenings, we've done it before but not in the past year (it was early last summer). It will not be a pleasant experience for any of us and why do I want to put him through that when we may not even need to? I knew and I told my husband when we left the meeting that they would not make this easy for us. That we have to do things their way, just the way they said. We have to do all the evaluations and then we could see the classroom. If I didn't have a choice then I would probably do it all but I do have a choice so why do I need to change that right now?
Basically the meeting was about us signing papers and for us to ask any questions we had. They provided very little information when we did ask questions. The woman who ran the meeting is the psychologist who it looks like is in charge of special education for all of our school district. I went to a mom's night out on Saturday and met with some other moms who had children in special education in our school district and they too deal with this woman, most did not have good things to say about her it seems she is rather inflexible with her rules. I am not looking forward to having to deal with her and frankly why would I want to start now if I don't have to? She has a big fake plastic smile and was very fake with us, smiling her fake smile the whole time she talked to us. Saying things like well he would go to school 5 days a week (he goes 2 days a week now to the program he attends). Yeah, we know that already.
So we go to leave and have to make an appt. for a hearing & vision screening, supposed to be later on this week. We make the appt. and leave. Talking on the way home and thinking about it more, why do we have to do this when we're not sure we are even putting him in the program at 3 or later on in the school year and I find out from the EI if he doesn't go now or sometime during the year we will have to repeat the hearing & vision screening as it is only good for a year. So why am I doing it now when we haven't decided if he's going?
Why am I hesitating? Joshua goes to a wonderful preschool program right now that he can continue to go to until he turns 5 if we want. It is the only one in our area and through word of mouth has become full this year. I learned about it through our local organization for families with children with special needs (who sets up our mom's night out and other events) Family Connection. I was assigned a parent through their support group and she told me about it, turns out she lives just blocks away from the preschool. It is for children with and without special needs, so he goes to school with typical developing children as well as children with a range of disabilities. There is no formal IEP (Individualized Education Plan) which he would get before he got into the school district's program. Yet we do have an individualized plan with goals and it is much easier to change and it is followed. There is one head teacher and 2 other teachers plus an aide and at most there are 9 kids in the class. The teachers love their jobs and care about the children, you can tell, it is a wonderful loving environment. Joshua is happy there! Sure it took some time to get him adjusted but he loves going to school and being there! What more could I want?
The school district's program is strictly for children with special needs/disabilities. There are no peer role models (typically developing children) such as he has now at his school. He would have to have an IEP right away. There is only 1 teacher and 1 aide for each class, the class size is the same (although at his school there are rarely 9 kids in the class and he does get individual time). He would most likely get group therapy, not individual therapy like he gets at home and in clinics he goes to. He could still get outside therapy though but he would be going to preschool 5 half days a week (we would want mornings, he goes in the morning now and he naps in the afternoon). I take him an hour + each way to OT/cranial sacral therapy now on Monday mornings, not sure I could take him out of preschool to do that if I did he would only go 4 days a week. I have no idea what we would do with him in the summer. At his current school they are only out 2 weeks at a time, in the summer it is for only the last 2 weeks in July.
So I told the EI that before we set up any more evaluations (they want to do hearing & vision right away and a psych evaluation) I'd like to see a classroom. The psychologist said she couldn't just show us a classroom, she would need to see where he would fit and then she would show us that classroom but in order to do that she needs to know where he would fit so we have to do the hearing & vision eval and a psych eval. But if he doesn't end up going we have to do those evals all over again and possibly others (they want current OT, PT & speech evals from the past year) before he attends. We have the OT & speech, have to get the PT but we would have to get them all over again next year if he doesn't go this year and if we didn't have them they would do their own.
I want to see the environment because frankly they have a lot to live up to to be anywhere close to where he goes now. I can tell they are not going to make it easy for us to do this. The psychologist told the EI that we should call her ourselves, I do not think she will be any more flexible with us. You may think just do what they ask but you don't know Joshua very well. He will fight the hearing & vision screenings, we've done it before but not in the past year (it was early last summer). It will not be a pleasant experience for any of us and why do I want to put him through that when we may not even need to? I knew and I told my husband when we left the meeting that they would not make this easy for us. That we have to do things their way, just the way they said. We have to do all the evaluations and then we could see the classroom. If I didn't have a choice then I would probably do it all but I do have a choice so why do I need to change that right now?
Wednesday, August 3, 2011
Five Things You Should Know About a Special Needs Family
Five Things You Should Know About a Special Needs Family
Saturday, July 23, 2011
The Ten Commandments for Parents of Kids with Special Needs
Sharing this, I read it on another blog.
1. Take one day at a time, and take that day positively. You don’t have control over the future, but you do have control over today.
2. Never underestimate your child’s potential. Allow him, encourage him, expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you’ll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can’t be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
8. Be kind to yourself. Don’t focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
1. Take one day at a time, and take that day positively. You don’t have control over the future, but you do have control over today.
2. Never underestimate your child’s potential. Allow him, encourage him, expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you’ll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can’t be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
8. Be kind to yourself. Don’t focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
Friday, July 22, 2011
Update #2
Even though it was so long I still forgot some things to include in the update. Joshua is using a bigger boy sippy cup! For the longest time he was stuck on a semi-soft Tommee Tippee cup. I bought some other cups to try with him and he wasn't interested in any of them. He did like a cup that had a silicone spout but he bit a hole in it and then it leaked all over the place. A few weeks ago I tried a hard spout sippy cup that I had bought a few months ago again. It had Elmo on it and finally he decided it was ok! We have now switched him over exclusively to these cups! I am hoping eventually he'll take most types of hard spouts but for now I am thrilled he's happy with this cup. I have gotten rid of most of the others and am even going to be able to sell a brand new set that is still in it's packaging. He is also learning to take bites. Normally he would shove an entire whatever into his mouth but now if it's something too big he will take bites of it.
Update
It has been a long time so I thought it was time for an update. Joshua is doing so well! He is learning and growing and we are so proud of him! In March he took his first steps and now he is walking all the time! His gait has improved considerably and he is learning to climb steps and walk on uneven surfaces. He wants to run sometimes and will walk as fast as his legs will carry him, it is so cute!
He is learning one step commands, we have been focusing on give me by saying it and also holding our hands out to him and he is learning what it means. Sometimes he will give things we don't even ask for, just walk up to you and give you something. If it's a book it has to be read and he waits smiling eagerly for you to start reading. He mostly does this with me, with the same book, reading it over and over again until he's had his fill. He is interacting so much more.
He loves preschool. When we go in he will greet everyone by walking up to them. He plays with the other kids now and loves watching them and chasing them! He wants to do whatever it is they are doing. If they're playing with something he wants to play with it. He will take something if he wants it, even if someone else is already playing with it. He wants to be included especially with the bigger boys. He is sitting in a big boy chair at circle time now! Before he was in a Rifton chair with a seat belt. Now he sits in a cube chair. He is letting the teachers do more hand-over-hand motions with him as well.
He is sleeping in a big boy bed now too! We knew the time would be coming soon so I researched and researched which bed would be best for him. I had a few other special needs moms recommend one particular bed, a fire truck bed made by Step 2. Looking for it online I found it's no longer being made. Then I searched Craigslist and found someone selling one! What luck! It has high sides on it so he is less likely to fall out of it and it even has a step (not that he uses it right now, he scoots himself into it). Most toddler beds have a small area on either side of the headboard made to keep them from rolling and I was worried it wouldn't work. His crib was a convertible crib but it was too high off the ground and he couldn't climb into it plus it only had one small rail to keep him from rolling out. It has been 2 weeks now and he sleeps in it for naps and for bedtime. He is doing so well that we got rid of his crib! I will admit in the beginning it wasn't easy. I wanted to give up at one point but I am so proud of myself for not giving up because it was absolutely worth it. I have packed up all his nursery stuff and am trying to sell it. We are going to be getting some Sesame Street decorations for him, already got him a Sesame Street bed set. Right now though he isn't using a pillow and he's never really used blankets but it will be good later on. He fell asleep on the floor a few times but now he will play until he gets tired enough and then he'll crawl up into his bed and go to sleep! Have I mentioned how proud I am?
Sometimes I get down but I try to remember all that he has accomplished in the last few months, these have been huge steps for him and remembering that makes me feel good. This journey has not been easy but he's making progress all the time. Last weekend we went to an event with our local special needs group and it was at a splash park. We didn't think Joshua would like it but turned out he loved it! I LOVE seeing him happy! Isn't that all that moms want for their children? He had an absolute ball, I was only sorry I hadn't brought my swim suit because we had tried the sprinkler in the backyard and he wasn't interested so we were shocked how much he loved the splash park. We will be making a return trip. He is also learning to keep his head above water at the pool. We got him a floatation vest and are trying to teach him to kick and splash in the pool, he is getting better.
I am beginning to think he's going to eat us out of house and home! He is 30lbs and almost 36 inches tall. Everyone has commented since he started walking at how tall he looks but he is right at average for his age. I guess he just looks taller since he's standing up all the time now. He is eating and eating too! I don't know where he puts it! Used to be that he would be satisfied with 3 meals, now he wants snacks in between. If it's something he likes to eat he will eat a lot of it. He loves pizza and can eat 2 to 3 slices in one sitting! He also loves: grilled cheese, hot dogs, cheese crackers (he ate a 1lb box in less than 2 weeks!), yogurt snacks, yogurt, animal crackers, brother's fuji apple crisps (he won't eat any others) carrots and french fries. I know most kids his age aren't good eaters and he doesn't eat a lot of variety but the things he does eat he eats a lot of. I try to buy healthy snacks for him, like Earth's Best brand makes a lot of organic snacks. We also eat turkey hot dogs and I buy organic milk with DHA added.
Yes he is still taking 2 naps! Most people are astonished and I thought that moving him to a bed he might move to one nap which would mean we'd have to make some changes to his schedule but nope, by 10 or 10:30 he is ready for a nap and usually takes a short one. Then he naps from 2-4. We try our best to wear him out so he sleeps well. He's usually asleep by 8:30. Until the last few days he was sleeping until 6:30 or 7 but then he started waking at 5:30 so mornings are varied. Well it's time for my lunch and soon will be time for Joshua's and I think this is a long enough update.
He is learning one step commands, we have been focusing on give me by saying it and also holding our hands out to him and he is learning what it means. Sometimes he will give things we don't even ask for, just walk up to you and give you something. If it's a book it has to be read and he waits smiling eagerly for you to start reading. He mostly does this with me, with the same book, reading it over and over again until he's had his fill. He is interacting so much more.
He loves preschool. When we go in he will greet everyone by walking up to them. He plays with the other kids now and loves watching them and chasing them! He wants to do whatever it is they are doing. If they're playing with something he wants to play with it. He will take something if he wants it, even if someone else is already playing with it. He wants to be included especially with the bigger boys. He is sitting in a big boy chair at circle time now! Before he was in a Rifton chair with a seat belt. Now he sits in a cube chair. He is letting the teachers do more hand-over-hand motions with him as well.
He is sleeping in a big boy bed now too! We knew the time would be coming soon so I researched and researched which bed would be best for him. I had a few other special needs moms recommend one particular bed, a fire truck bed made by Step 2. Looking for it online I found it's no longer being made. Then I searched Craigslist and found someone selling one! What luck! It has high sides on it so he is less likely to fall out of it and it even has a step (not that he uses it right now, he scoots himself into it). Most toddler beds have a small area on either side of the headboard made to keep them from rolling and I was worried it wouldn't work. His crib was a convertible crib but it was too high off the ground and he couldn't climb into it plus it only had one small rail to keep him from rolling out. It has been 2 weeks now and he sleeps in it for naps and for bedtime. He is doing so well that we got rid of his crib! I will admit in the beginning it wasn't easy. I wanted to give up at one point but I am so proud of myself for not giving up because it was absolutely worth it. I have packed up all his nursery stuff and am trying to sell it. We are going to be getting some Sesame Street decorations for him, already got him a Sesame Street bed set. Right now though he isn't using a pillow and he's never really used blankets but it will be good later on. He fell asleep on the floor a few times but now he will play until he gets tired enough and then he'll crawl up into his bed and go to sleep! Have I mentioned how proud I am?
Sometimes I get down but I try to remember all that he has accomplished in the last few months, these have been huge steps for him and remembering that makes me feel good. This journey has not been easy but he's making progress all the time. Last weekend we went to an event with our local special needs group and it was at a splash park. We didn't think Joshua would like it but turned out he loved it! I LOVE seeing him happy! Isn't that all that moms want for their children? He had an absolute ball, I was only sorry I hadn't brought my swim suit because we had tried the sprinkler in the backyard and he wasn't interested so we were shocked how much he loved the splash park. We will be making a return trip. He is also learning to keep his head above water at the pool. We got him a floatation vest and are trying to teach him to kick and splash in the pool, he is getting better.
I am beginning to think he's going to eat us out of house and home! He is 30lbs and almost 36 inches tall. Everyone has commented since he started walking at how tall he looks but he is right at average for his age. I guess he just looks taller since he's standing up all the time now. He is eating and eating too! I don't know where he puts it! Used to be that he would be satisfied with 3 meals, now he wants snacks in between. If it's something he likes to eat he will eat a lot of it. He loves pizza and can eat 2 to 3 slices in one sitting! He also loves: grilled cheese, hot dogs, cheese crackers (he ate a 1lb box in less than 2 weeks!), yogurt snacks, yogurt, animal crackers, brother's fuji apple crisps (he won't eat any others) carrots and french fries. I know most kids his age aren't good eaters and he doesn't eat a lot of variety but the things he does eat he eats a lot of. I try to buy healthy snacks for him, like Earth's Best brand makes a lot of organic snacks. We also eat turkey hot dogs and I buy organic milk with DHA added.
Yes he is still taking 2 naps! Most people are astonished and I thought that moving him to a bed he might move to one nap which would mean we'd have to make some changes to his schedule but nope, by 10 or 10:30 he is ready for a nap and usually takes a short one. Then he naps from 2-4. We try our best to wear him out so he sleeps well. He's usually asleep by 8:30. Until the last few days he was sleeping until 6:30 or 7 but then he started waking at 5:30 so mornings are varied. Well it's time for my lunch and soon will be time for Joshua's and I think this is a long enough update.
Wednesday, June 8, 2011
Sunday, May 8, 2011
Thursday, May 5, 2011
Wednesday, May 4, 2011
Giveaways at Love that Max!
My favorite blogger and favorite blog is doing one of my favorite things, giving things away! Yahoo! So to get extra entries into her fabulous giveaways I am sharing the info right here! Go to www.lovethatmax.com!
Sunday, April 17, 2011
Saturday, April 9, 2011
Traveling with a toddler
Joshua is a great traveler. He does great being in the car. Every monday we drive over an hour each way to OT and he does great. That's not my problem, he does fine and adjusts pretty well to new places. Last year we went on 2 vacations and he did fine both times but he was able to sleep in a pack'n'play (portacrib). Now I'm not so sure. He hasn't slept in one in over 6 months and he has grown since then, he's now 3ft tall and over 30lbs, I'm pretty sure that's over the limit for the pack'n'play. I don't want him to try to climb out if it and get hurt, he has never tried to do this in the past but he is so much more mobile now and is always trying to climb up on the coffee table and couch. He has never tried to climb out of his crib either but he probably will one day, I dread that and trying to get him to sleep in a bed (that's for another post). So here is my dilema, what do we do when we're on vacation? The place we go to at the beach I was able to reserve a pack'n'play but not where we'll be going in October and do I really want him sleeping in one anyway since he's so big? So I found the PeaPod Plus. It's a tent with an air mattress inside, it unzips one on side and on the other has mesh like the pack'n'play. It's a bigger version of the regular PeaPod, this one's mattress is the size of a regular crib so ideal for up to age 6, (the original I would imagine would be the size of the pack'n'play mattress). But I'm concerned, it's a tent, he's never slept in one. It can be hot in there I've read and he is very warm natured, I do not want him to overheat. Will he like it and sleep in it? That's probably my biggest concern. He's never slept in a regular bed either so my other option of an air mattress on the floor I'm equally worried about. Please, I really am looking for input. Joshua is the size of a 2 year old but is not cognitively a 2 year old, he's a baby or 1 year old, hence my dilema.
Friday, March 25, 2011
Saturday, March 19, 2011
Thursday, March 3, 2011
Monday, February 21, 2011
Favorite Apps
Joshua's Favorite Apps
Sparkabilities Babies 2 for iPad is probably his favorite. When he first started playing with it he would play 1 or 2 cards and now he can just keep playing, all the cards and go back for more.
Peekaboo Barn is a pretty close 2nd, it was the first paid app I got for him because he loved the lite version.
Hatch! was the first app he learned, he learned to keep touching the screen until the egg hatched.
In The Meadow, we have the lite version because as far as I can tell there's no difference (besides additional languages that we don't need). He loves this one and the others from the same developer.
Peekaboo Wild is from the same developer as Peekaboo Barn but Joshua likes the barn better.
Talking Tom, Joshua likes to pet him to make him purr but that's about it.
Working on the Railroad, again we have the lite version as it doesn't seem the paid version offers anything else.
Look Baby! was the first app he really liked. He also learned on this app to touch the teddy bear to make him laugh and the butterfly to change it's color and he does still like it.
We have a lot more apps but these are definitely Joshua's favorites. We have lite versions of Dr. Seuss's ABC, The Cat in the Hat and Green Eggs and Ham. I like them but Joshua's not crazy about them so I haven't purchased the full version. He does like Little Bella's I Close My Eyes which I did purchase the full version of. I like the Story Chimes apps but they're too long and Joshua doesn't really like book apps. I found an app called MeeGenius which offers books and comes with 6 books for free and the app is free, it's nice but the books are very basic no animations.
For communication I have iComm, MyTalk and TapToTalk. Of them my favorite is iComm which we have the free version of and even the free version is customizable but there is no sound in the free version I still like it though for basic pictures. We also have Verbs with Milo but I don't like that at the end of each verb Milo says TaDa, just annoying but otherwise it's an ok app.
I just downloaded Infant Arcade but Joshua doesn't really like it at least not yet but we got the free versions of PeekABoo, Numbers and Alphabet. He doesn't really like apps where you just touch different things on the screen at least not right now anyway, he likes to just keep tapping the screen like you do in Sparkabilities and Peekaboo Barn. I got Preschool Games - Farm Animals (Photo Touch) and Baby Games - My First Shapes which are customizable but we have them set on 2 items on the screen and you pick the correct one. Joshua doesn't know to pick what's being asked but he does know that if he picks the wrong one he won't get to the next one so he will pick the other option so he is learning that.
Sparkabilities Babies 2 for iPad is probably his favorite. When he first started playing with it he would play 1 or 2 cards and now he can just keep playing, all the cards and go back for more.
Peekaboo Barn is a pretty close 2nd, it was the first paid app I got for him because he loved the lite version.
Hatch! was the first app he learned, he learned to keep touching the screen until the egg hatched.
In The Meadow, we have the lite version because as far as I can tell there's no difference (besides additional languages that we don't need). He loves this one and the others from the same developer.
Peekaboo Wild is from the same developer as Peekaboo Barn but Joshua likes the barn better.
Talking Tom, Joshua likes to pet him to make him purr but that's about it.
Working on the Railroad, again we have the lite version as it doesn't seem the paid version offers anything else.
Look Baby! was the first app he really liked. He also learned on this app to touch the teddy bear to make him laugh and the butterfly to change it's color and he does still like it.
We have a lot more apps but these are definitely Joshua's favorites. We have lite versions of Dr. Seuss's ABC, The Cat in the Hat and Green Eggs and Ham. I like them but Joshua's not crazy about them so I haven't purchased the full version. He does like Little Bella's I Close My Eyes which I did purchase the full version of. I like the Story Chimes apps but they're too long and Joshua doesn't really like book apps. I found an app called MeeGenius which offers books and comes with 6 books for free and the app is free, it's nice but the books are very basic no animations.
For communication I have iComm, MyTalk and TapToTalk. Of them my favorite is iComm which we have the free version of and even the free version is customizable but there is no sound in the free version I still like it though for basic pictures. We also have Verbs with Milo but I don't like that at the end of each verb Milo says TaDa, just annoying but otherwise it's an ok app.
I just downloaded Infant Arcade but Joshua doesn't really like it at least not yet but we got the free versions of PeekABoo, Numbers and Alphabet. He doesn't really like apps where you just touch different things on the screen at least not right now anyway, he likes to just keep tapping the screen like you do in Sparkabilities and Peekaboo Barn. I got Preschool Games - Farm Animals (Photo Touch) and Baby Games - My First Shapes which are customizable but we have them set on 2 items on the screen and you pick the correct one. Joshua doesn't know to pick what's being asked but he does know that if he picks the wrong one he won't get to the next one so he will pick the other option so he is learning that.
Sunday, February 20, 2011
Sunday, February 13, 2011
Sunday, January 23, 2011
Joshua playing
A video of Joshua practicing his new skill. He can now put all 4 different sized balls in the top of the toy. Last night at EdVenture Children’s Museum he played with wooden nesting blocks and put a small block into a bigger one!
This is the toy.
Saturday, January 15, 2011
My New Life
I've been thinking a lot lately about how different my life is now, certainly different from what I expected it to be that goes without saying but different now than what it was a year ago and even more so 2 years ago. Last year we had just started on this journey with Joshua, early intervention and therapy, it was all new and the idea that he was delayed was pretty new too.
I view things differently now. I am on lots of sites geared towards moms with kids with disabilities and I keep finding new ones. Stories that wouldn't have touched me as much before really do now.
I had a friend who has a child with Autism, she wasn't ever a close friend but now she's not my friend at all. She works in her state to help parents with children with disabilities yet she completely abandoned me. She's supposed to help other parents yet she criticized me for complaining, I guess she doesn't remember how I'm feeling now, how she felt a few years ago. I know she wasn't ever really my friend in the first place but it hurts more because she has a child with special needs and she wasn't given much hope when she got his diagnosis, he's doing phenomenally now. I could never do to someone else what she did to me. I think I'm entitled to complain more. I am envious of parents who complain about their children misbehaving when Joshua can't misbehave the same way.
I am constantly looking for new apps to download for Joshua's future iPad. We have about 70 apps now, not all for him but most of them are. All are free either lite editions of apps or were on sale so I got them for free.
I sent Joshua with my husband to his family's for Christmas Eve and Christmas Day. Since it's not my holiday (I'm Jewish in case you didn't know) and I decided I really needed the break. I was warned about missing them but is it awful to say that I enjoyed my break? I will admit having the house to myself for that long was a little strange but it was nice. I am now planning a trip to visit my niece and her family in March/April, a weekend I think, my first I hope of many, I hope to make it a yearly thing.
I am going to my first special needs conference in a few weeks. It's local and through Family Connection of SC, I think it will be really good. I know I wasn't ready last year but I am more ready now. I am feeling more and more like this is where I belong, not by choice but by need. This is where I need to be. There is a really great video I saw recently that really sums it all up.
I don't know why I'm on this path or why Joshua was the child chosen for us, maybe one day it will be more clear to me but for now this is where I am. When I can I take breaks to do things I enjoy because too much focus on special needs is too overwhelming for me but in small segments broken up I can handle it. I think I am doing better at handling things a little bit, it was a bit shaky there for a while but I am feeling ok.
I view things differently now. I am on lots of sites geared towards moms with kids with disabilities and I keep finding new ones. Stories that wouldn't have touched me as much before really do now.
I had a friend who has a child with Autism, she wasn't ever a close friend but now she's not my friend at all. She works in her state to help parents with children with disabilities yet she completely abandoned me. She's supposed to help other parents yet she criticized me for complaining, I guess she doesn't remember how I'm feeling now, how she felt a few years ago. I know she wasn't ever really my friend in the first place but it hurts more because she has a child with special needs and she wasn't given much hope when she got his diagnosis, he's doing phenomenally now. I could never do to someone else what she did to me. I think I'm entitled to complain more. I am envious of parents who complain about their children misbehaving when Joshua can't misbehave the same way.
I am constantly looking for new apps to download for Joshua's future iPad. We have about 70 apps now, not all for him but most of them are. All are free either lite editions of apps or were on sale so I got them for free.
I sent Joshua with my husband to his family's for Christmas Eve and Christmas Day. Since it's not my holiday (I'm Jewish in case you didn't know) and I decided I really needed the break. I was warned about missing them but is it awful to say that I enjoyed my break? I will admit having the house to myself for that long was a little strange but it was nice. I am now planning a trip to visit my niece and her family in March/April, a weekend I think, my first I hope of many, I hope to make it a yearly thing.
I am going to my first special needs conference in a few weeks. It's local and through Family Connection of SC, I think it will be really good. I know I wasn't ready last year but I am more ready now. I am feeling more and more like this is where I belong, not by choice but by need. This is where I need to be. There is a really great video I saw recently that really sums it all up.
I don't know why I'm on this path or why Joshua was the child chosen for us, maybe one day it will be more clear to me but for now this is where I am. When I can I take breaks to do things I enjoy because too much focus on special needs is too overwhelming for me but in small segments broken up I can handle it. I think I am doing better at handling things a little bit, it was a bit shaky there for a while but I am feeling ok.
Saturday, January 8, 2011
Long time, no post
This blog post has been a long time coming, I think I was scared to write it down because that makes it more real to me. A few weeks ago or last month I guess it was I did something I shouldn't have and wish with everything I have that I could take it back. I did what the genetic counselor said I shouldn't do. I googled Joshua's diagnosis. It scared me, really badly. I also found a site for moms with boys with his diagnosis, that made it worse. I felt a little better after talking to the genetic counselor who told me that Joshua was the 1st to be diagnosed with a very small duplication, the smallest ever reported and just on the one specific part of the gene/chromosome (not sure which one).
I haven't been the same since this happened though. I'm terrified for his future. Before this I just lived day to day doing the best I could, now I'm just going through the motions trying to get through the day. In the beginning, a few weeks ago, I was crying a lot. Now I'm not sure if I'm numb or what, I do still think about it, obsess over and need to stop.
I was upset when we found out Joshua was a boy, I wanted a girl. I got over that though, for the most part. Then we found out Joshua was delayed and now this. What's next? I'm trying to move forward but not really sure how. I really only wanted one child, a girl. I can't help but think about what he's not going to be and that I may not have grandchildren one day. I'm scared to find out if I am a carrier for what he has, that would make me feel worse. I'm not sure I/we could handle having another baby anyway. I feel like seeing a typical baby achieve milestones would hurt. My heart hurts for Joshua but he's happy and doesn't know but I do and that's what hurts.
I've thinking about this post, I know I haven't updated in a long time so I thought it was time but I wasn't ready, still not sure I am now. I wonder how long I'll feel this way, I know lots of kids his age that are doing more than he is and it hurts. I still wonder why me, why him? I don't believe that special people get special kids and I don't feel blessed right now, maybe one day I will. So that's basically where I'm at right now, just getting through the day in one piece.
Oh we are most of the way to getting Joshua his iPad! We have gotten more donations and we're at $400 right now! I want to get the 32GB model with an extended warranty & case so we're looking at $750 so we're more than halfway there. I know we'll be putting in our own money so we won't be waiting much longer. I figure we'll wait until he gets to try it first and then we'll decide if we're getting it now or waiting. It will be February or March when we get to try it for 2 weeks.
I haven't been the same since this happened though. I'm terrified for his future. Before this I just lived day to day doing the best I could, now I'm just going through the motions trying to get through the day. In the beginning, a few weeks ago, I was crying a lot. Now I'm not sure if I'm numb or what, I do still think about it, obsess over and need to stop.
I was upset when we found out Joshua was a boy, I wanted a girl. I got over that though, for the most part. Then we found out Joshua was delayed and now this. What's next? I'm trying to move forward but not really sure how. I really only wanted one child, a girl. I can't help but think about what he's not going to be and that I may not have grandchildren one day. I'm scared to find out if I am a carrier for what he has, that would make me feel worse. I'm not sure I/we could handle having another baby anyway. I feel like seeing a typical baby achieve milestones would hurt. My heart hurts for Joshua but he's happy and doesn't know but I do and that's what hurts.
I've thinking about this post, I know I haven't updated in a long time so I thought it was time but I wasn't ready, still not sure I am now. I wonder how long I'll feel this way, I know lots of kids his age that are doing more than he is and it hurts. I still wonder why me, why him? I don't believe that special people get special kids and I don't feel blessed right now, maybe one day I will. So that's basically where I'm at right now, just getting through the day in one piece.
Oh we are most of the way to getting Joshua his iPad! We have gotten more donations and we're at $400 right now! I want to get the 32GB model with an extended warranty & case so we're looking at $750 so we're more than halfway there. I know we'll be putting in our own money so we won't be waiting much longer. I figure we'll wait until he gets to try it first and then we'll decide if we're getting it now or waiting. It will be February or March when we get to try it for 2 weeks.
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