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| Kids with speech delay |
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| I am a stay at home mom to 2 beautiful boys. My oldest has apraxia and sensory integration disorder. He is 2 and a half and says about 5 words(no, mama, dada, woof, buba-for his younger brother) Every day is a challenge for us. We are teaching him a combination of ASL and baby sign and just recently he really has been showing interest in signing. I think he finally realized he can communicate that way. Anyways, I am just looking for support and tips from other parents on every issue involving speech delay. |
| Posted by luvmyboys on 03/11/2008 11:41 PM
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| Hi Sara. We just (last week) found out our 3 year old son has apraxia also, although we knew he was behind with speaking. We are getting ready to start speech therapy for him and whatever else they advise we try. I stay at home with both my boys also (3 years and 3 months). I am really learning a lot about apraxia in a short period of time; I feel like I am back in school and "cramming" for some type of exam or something. I definately don't have many tips yet, but I understand it is just nice to talk with others who are experiencing the same thing and really know how you feel. How long have you had the apraxia diagnosis? I know we are having a hard time, just because we figured he would "catch up" with talking on his own, but now at least we have some direction so he can get the help he needs. |
| posted by Rhonda on 03/12/2008 12:02 AM
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We have known for some time that he had a speech delay but we got the apraxia diagnosis about 6 months ago. Jack had seizures shortly after birth which qualified him for early intervention from day one. He has been fortunate enough to be around professionals who recognize the signs. I am so thankful for that because every time I mentioned his lack of speech to his pediatrician, she would say something like boys are late talkers and he will catch up.
I always knew in my heart that something else was going on though. He is a very smart little boy and understands everything you say. I have a ton of tips for you, I was the same way when I found out, I was reading every peice of info I could find, and it sounded exectly like Jack. There are some great websites, and more and more books are being written everyday.
Right now we are working on vowels and making the first sound of a work,like TRA for train or BA for ball. I also use sign language which helps so much with day to day needs, like eating and drinking. My speech therapist and OT also just recently came to my house and took pictures of everything, from favorite toys and food, to the potty and car seat, and we made a book out of the pictures. Now when Jack needs something he can point to the book and ask, and I encourage him to try and sign or make the first noise.
I also do a running commentary of my day, you know like "now I am washing the white plate, look how the bubbles run down the plate, next I will rinse with hot water"etc. One thing I have learned with jack is I never give him ultimatums, that was the first approach we used before we knew it was apraxia. I would make him sign or atleast attempt to say the word before I gave him juice or whatever it might have been. That lead to many temper tantrums and him just shutting down. Now that I know how his brain works it is so much easier to deal with him and understand what he is going through.
So have you started speech therapy already? have you had your sons hearing checked? is your son potty trained because Jack is not and he has no interest at all. I dont know how much of it is he just does not want to and how much is related to his lack of speech. I try and take the laid back approach but boy am I sick of changing diapers, espically now that I have 2 in diapers!
I have recenly been considering trying to enroll Jack in a sigh language class with deaf children, mostly so he can communicate with them. I notice him at the playground trying to sign to other kids who of course dont understand at all. I fell bad for him cause other children will ask him questions and he just stares at them. I know he understands what they are saying he just cant respond.
OK well I need to go now, naptime is over. I am happy for you that your som has a diagnosis, from there you can really start the right therapy to help him. I look forward to hearing from you. Sara |
| posted by luvmyboys on 03/12/2008 06:14 PM
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First of all, I will appreciate any and all tips, tricks, websites, books and anything else that could in any way be useful. Believe me, I will take all the help I can get. Ardens actually tries to talk all the timewe just cant understand most of what he is saying. I actually just got the report back from the speech therapist today and they say only 10% of what he says would be understandable to a stranger. We are a little better around the house, but we are lucky if we get 30% or so. He does a lot of pointing, and I ask him to show me things all the time. He says the beginning of a lot of words how is house and ba is ball but I would be thrilled if he could say tra for train. I am actually to the point where I dont want anyone else (including well meaning grandmas, aunts, and uncles) to be alone with him since I wouldnt be there to at least interpret some. I guess I am pretty protective of him and his feelings. He is very bright, but I wonder if he just thinks that this is the way talking issometimes it comes out right and other times it doesnt.
When Arden was very small we taught him a few signs: more, all done, food, drink, please. The only reason we taught him was because we thought it was cool and he could tell us what he wanted before he could talk. When we first noticed he was behind I thought maybe he wasnt trying since he could sign it, why say it. So we started fazing out the signs and when he would sign it I would say with your words and have him attempt to say it. As long as he tried I was happy, even though his try was usually da. Anyway, often times he still does the sign for drink or food which is very helpful. He made up his own sign for Im sleepy which he does while trying to say it too. At this point we arent teaching him any more signs, but are kinda in a holding pattern until his therapy starts (probably in about 2 weeks) and we will go whatever route they suggest.
Ardens hearing has been checked and is fine. Funny thing about potty trainingI like the laid back approach and that is what I am doingbut Im not completely against some bribery on occasion. 1 weeks ago I told Arden if he went on the potty he would get a stickerhe did okay for the first day or two, but was definitely loosing interest quickly. Then my husband told him if he earned 5 stickers he could have a piece of candy (major treat). That was the perfect thing for him. I put a piece of paper on the fridge and when he goes pee he gets to pick a sticker (train stickers thrill him since he loves trains so much). When we put the sticker on the paper we count how many he has and how many more he needs to get to 5 (squeezing in math and counting when I can). The first day or two he was all about the candy, but now he loves getting the candy but will leave it on the table half eaten. I have to say I dont mind throwing it away either Anyway, bowel movements are a different story. I even got him some cars and told him he could have one each time he went on the pottyhe is pretty hit and miss on that, but I am sure it will come. I know what you mean about being sick of diapers. I have two in diapers too, and it gets costly and I get tired of changing them too.
I have to say I am not a huge fan of TV but Deigo has really had Arden trying to talk lately. At first, he just watched, but after a few days he started answering when they would ask a question. Now, he tries to answer all the time, tries to tell me about what is going on and really tries to participate. I sit with him and watch it and encourage his efforts and if he doesnt answer a question when Deigo asks it I will ask him and sometimes get a response. I have to think any effort is probably a good thing? The other day he said llama clear as could be, but when I asked him what it was he said it was mama It was actually cute and sad at the same time. After saying it twice as mama he just said my mommy almost like making a joke out of it.
How is the sign language coming along? Does he know many words yet? Is he picking up on it quickly?
Okay, I am really not trying to write a book hereI should go for now and try to unwind from the day. Have a nice night and hope to hear from you soon.
Rhonda
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| posted by Rhonda on 03/12/2008 11:34 PM
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Hey Rhonda, so Jack really likes to sign, he signs train, rain, milk, more, eat, want, cry, bear, elephant, lion, dog, cat, i love you, boy, daddy, mommy, cheese, crackers, and a few more I cant think of right now.
My mom feels the same way about signing that you said, if he can sign why say it, but Jacks speech therapist told me that is silly because saying it is so much easier and when he can talk he will. Signing right now is just helpful in day to day situations. Plus I think it is neat to watch him use sign language, and if he keeps learning it he will be considered bilingual.
For resources go to google or amazon and type in apraxia and you will find lots of books and website. www.apraxia-kids.org/ is a good one to start at. Does Arden have good muscle tone in his mouth? alot of kids with apraxia have low muscle tone so it is hard for them to do things like suck from a straw and blow bubbles. is he has low muscle tone you will need to start exercises to strengthen his mouth. one thing that works for us is looking in a mirror together and moving our mouth, blowing kisses, and making noises.
Another thing that has worked for us is imitation. I make a game out of it throughout the day and I dont only focus on speech. For instance I will encourage Jack to flap his arms like a bird or make a funny face, and when he is having fun and thinks it is a game I will throw in a word for him to imitate, and no pressure if he doesnt, that way it stays fun like a game.
Most kids with apraxia in their mind the word sounds correct but when it come out it is all messed up, so when Jack attempts to talk I never tell him he is wrong, instead I say "yes, I like Thomas the train too" and model for him exactly how the words are supposed to sound. That way he is getting recognition that I understand him but learning at the same time.
The great thing about apraxia is there is a bright light at the end of the tunnel. Arden will learn to talk correctly and be like any other kid. He just has to work a little harder then other kids.
Jack has made up for his lack of speech in so many ways. He is really dramatic with his facial expressions. I always joke he is going to get the academy award for drama! he has found other ways to get his feeling across.
I still read to my kids all the time, and I am constantly pointing out colors, shapes and counting. I sing the alphabet. It is so hard to judge how much he is learning but I just keep laying it on thick.
Jack is enrolled in a speech class 2 days a week that he loves! there are 4 other children in there with speech delays so they all relate and help each other. it is very positive and when any of the attempt to talk we make a huge deal out of it so they veel encouraged.
OK I fell like I am dragging on. So Arden starts speech therapy in 2 weeks, is he getting any other services? have they written his IFSP yet? just remember you have to fight hard on his behalf. They will try and give him the minimum amount so you have to be pushy. Study the laws in your state regarding his rights and be prepared. If you dont feel comfortable with anything, dont sign and papers. They have a responsibility to make sure you are happy with the services you and your family are receiving.
OK let mw know how things are going. Sara |
| posted by luvmyboys on 03/14/2008 02:03 PM
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Wow, Jack really signs a lot of words. That is very cool that he knows so many and is still learning more.
Can I vent for a minute? I was just talking to my brother today and he was saying he thinks Arden will just catch up and basically that therapy was a waste of money, but he assured me since it was my money I could do whatever I wanted with it (nice of him, huh?) Anyway, I was trying to explain to him that Arden wont just catch up and what apraxia is like. He says he thinks he will catch up because he is talking a little more/better than he was 6 months ago. I told him Arden has made some improvements and can do more, but that is because my husband and I are working with him (most of the suggestions from the SLPs at his evaluation we were already doing), but I hope when he gets in school he would be speaking age appropriately. I dont want him being teased by other kids. He says well, all kids get teased about something I said that is true, but most kids can at least reply back. I was so angry. Then I asked him if he has taken the time to go to any websites and do any research about apraxia and see what the experts say. Of course, he hasnt done that either. Okay, I wouldnt be as shocked if this conversation had taken place with a stranger, but my own brother??? AAHHHHH!!!! Anyway, thanks for letting me get that off my chest and out of my system.
I think Ardens muscle tone is okay, but he cant move his tongue a whole lot. He can stick it out, but cant move it from side to side. My younger son, Emery, is at a stage where he likes to stick out his tongue and loves it when you do it back to him, so Arden and I have been playing with Emery like that. Then I will ask him if he can move it like I do (to the side or try to touch my nose with my tongue) and he has been trying. Not seeing the success yet, but I am sure he just needs practice and I know at least it isnt hurting anything.
I really try to do the same thing as far as staying positive with any attempts and saying it correctly afterwards. What do you do though if you just cant figure out what he is talking about? I will guess 2-3 times and if I dont get it I have been trying to change the subject just to avoid frustration. I would love to hear any other ideas on that though. I feel really bad if I have to go the change the subject route, but I dont want him to get too upset since I just totally miss it.
I kinda think anything in the world can be educational if we, the parents, really look for ways to make it so. It is crazy, my husband loves National Geographic and when it comes in the mail Arden gets so excited. He knows that after dinner he and Daddy will sit down and look at all the pictures and Daddy will talk with him about all the cool stuff they see in there. It is nice they spend the one on one time together and Arden feels like such a big boy. It takes quite a few nights to get through if there is a map in there since he wants to know where everything is.
I think we are going to have private therapy done 2 times a week and through the schools 1 time a week. I am going to push for more, but I dont know what I will be able to get. Within the next couple weeks we should have to go in and have his IEP done, so I will be doing much research on those very soon. Even if the schools will do more days, we will still need something in the summer while school is out. What do you guys do about no school in the summer?
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| posted by Rhonda on 03/14/2008 02:51 PM
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You know my Dad did something similar to what your brother did. After Tyler my youngest was born Jack called him Buba a few times (for baby I think) anyways my husband and I made this huge deal out of it since he was attempting to talk you know. Sure enough he said it a few times and then not again for like 6 months, but now he calls him that all the time. He walks around the house and yells buba if he cant find his brother, and Tyler responds to it.
Anyways I was telling my father that over the phone who lives on the east coast and he tells me to never let Jack call Tyler that again, nicknames last a lifetime hes says and we should be teaching him proper words and names, if he cant say Tyler then thats it. Well I think that is BS! I love it that Jack found a name for Tyler and if anything I encourage it. They are brothers and I want them to communicate anyway they can you know.
It is hard to listen to criticism from other people espicially family members, you just have to remember that Arden is your son and you know whats best for him. Plus you have a moms intuition that no one can mess with!
So about summer school I dont know. Right now Jack is in a speech class 2 days a week through early intervention but it ends in june when he turns 3. The SLP told me she was going to try and keep him in the class through summer until the fall when he will be in the city schools hands.
He is also receiving in home therapy once a week from the SLP and once a week from the OT for his sensory issues. Those will also both end in june so after that we are thinking about hiring a speech therapist to work with him once a week and hopefully he will stay in the class he is already in.
In may we are going to do our "exit strategy" where we will meet with his pediatrician, the special ed director in our school district, and all his therapists he is currently seeing. We will come up with a plan for the following school year.
Unfortunatly the elementary school in our district doesnt have speech services so he is going to be bussed to another district. I dont want to sound shallow, and I know this is going to come out wrong or insensitive, but I hate the thought of my son riding the "little" bus. I just know how mean kids are and I hate to think of my son getting teased over a thing like which bus he rides, I mean who cares right?
I have almost no advice for you and what to do when you cant understand Arden. I will try and read Jacks body language and the tone of his voice to guess, also notice what was leading up to him talking so maybe you have a point of reference. Jack also uses those pictures I told you about to show me when I dont understand, as long as we do that before he gets frusturated. We use PEC cards as well to help him with expressing his needs. Those come in so handy sometimes its unbelievable.
I also write down any word I think Jack says so our family and his teachers have a point of reference. I am not always going to be there to decipher what he is saying so that helps him alot. You can also do a little journal where you write down the things you do everyday and words he is using. That way if he is saying Baa over and over again they know he is talking about the bus he rode, not asking for a ball. Jack carries his journal with him so his teachers and grandparents can add to it if they need to.
OK well its time to go, talk to you soon. Sara |
| posted by luvmyboys on 03/18/2008 08:45 PM
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It is crazy how relatives think they know something when they arent the ones living in our houses and dealing with our children everyday. Arden always just refers to Emery as my baby. I am just glad he cares enough to try to talk to him or about him. I will try to get him to say Emery a few times a day, but I always quit before he gets too bored or frustrated. I am not a big fan of nicknames, but there is a difference between a nickname just because and a different name because he cant say the real name. Arden may always call Emery my baby long after he can say Emery, but I agree that is where the brothers thing comes in. When my brother was little he used to call me ra-ra since he couldnt say Rhondawhen he learned how to say my name, he did.
I can totally understand what you are saying about the bus. Life as a kid is hard enough with other kids teasing themyou dont want to put a sign on your kids back that says pick on me! I know the speech therapist at the school district we are in wants to talk about Arden going into a special education pre-school class next year. I hate the whole stigma that goes along with special education. It tears me up to think about it. Not that Arden doesnt need the extra help, but again it just goes to how kids are, and I dont want people thinking he isnt smart because he is in special classes. As a parent, I only want people to see the good things about my sons. I dont want a bunch of strangers knowing about our struggles or the things that are harder for him (yes, I actually did type that on a public message board on the internet. I see the irony in that :-) ) We know what great kids we have and when I think of anyone (kid or adult) hurting his feelings, it breaks my heart and makes me angry at the same time.
The journal idea is great! It seems like that would be really helpful. I dont think I would have thought about that. It is really hard for me to believe that there will be a time, not too far away, that I wont be there 100% of the time to help him. I know it sounds bad, but I am genuinely afraid of what will happen if my husband or I arent around to help him communicate with others. Im really concerned someone else wont have the patience to work with him. I have been so emotional for the last couple weeks; it seems all my worries are coming out tonight.
Good luck for your May meeting. I am not looking forward to our IEP, which I still havent heard anything about from the schools. Havent even called me to set up a time. At least it gives me a little time to research how the IEPs go and what our rights are and all that jazz. There is always a project around here :)
Okay, morning comes way to early around here, and I stay up way too late. Talk to you soon. Rhonda
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| posted by Rhonda on 03/19/2008 12:14 AM
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I thought of one more thing we are doing with Jack, we are giving him fish oil. I have read that it helps the brain develop and create new pathways. I guess alot of parents of autistic kids are trying it and seeing results. We bought him a gummy bear brand that he takes once a day with his normal multivitamin. I dont know if it is helping but it sure isnt hurting. Plus Jack hates fish so he never gets any of the fatty acids he needs.
We had a small breakthrough yesterday at the beach. Jack walked up to a child and looked right at him and said Hi, and the kid said hi back and they started running and playing together. It was so huge for him, I could tell he was very proud of himself.
I wanted to tell you too I think there is a time limit on how long you have to wait after requesting services, I think it might be 6 weeks, you should look into it so you are not waiting longer then you need to.
OK no more time to write, naptime is over already! Sara |
| posted by luvmyboys on 03/20/2008 06:32 PM
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That is so cool that Jack talked to the other little kid! I bet you guys were so excited. I am a bit concerned about Arden around other kids. He tries to be very social, but 90% of what he says isnt understandable. We always encourage him a lot, but I dont know how other kids would be. I know I cant sit down with them the whole time and tell the kid what Arden is trying to say. Maybe I just worry too much! It doesnt sound like it was a problem for Jack on the beach :)
I have heard a lot about fish oil lately. When we go to our pediatrician in 2 weeks for Emerys appointment I am going to ask her what she thinks about it. Arden had some heart problems when he was born, so I wanted to double check with her before we started it. Hopefully she will give the okay and we can start it. How long have you been doing the fish oil?
I think in our area the time frame is 30 school days. Im not positive, but if I dont hear anything by next Wednesday or so I will start calling to check on it. At this point we arent at the 30 days yet, but I think if I call start calling them now, they will know they need to stick by the time limit and get on the ball.
Any big family Easter plans for you? We are going to my in laws. Hopefully that will go well. We will see how my duo behaves
Talk to you later. Nap time is never long enough and since both of mine are down for the night, I have tons of stuff left over from the day still to do. --Rhonda
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| posted by Rhonda on 03/20/2008 11:33 PM
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| Hey Rhonda, just stoppin by to see if anything is new with you guys. Jack has been really frusturated and clingy the past few weeks. I cant tell if it has anything to do with Tyler starting to talk. Tyler is starting to sat mama, which Jack just mastered in the past few months. Anyways I am super busy lately but let me know how things are. Sara |
| posted by luvmyboys on 04/09/2008 07:00 PM
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Hi Sara,
Things have been crazy busy around here lately. Arden started his private speech therapy yesterday. Things went pretty well with that I think. He is going to go 1 time a week until they have another opening, then he will go twice a week plus whatever the schools will do.
The schools are another story. I called them a couple times and they aren't returning my calls. I am so angry with them right now. From what I can find, the school policy is 30 school days from when they received the signed permission slip to have Arden's evaluation and IEP. Federal guidelines are 60 calendar days. Either way, the cut off they have is 4/15. I haven't received anything from them at all, and apparently they don't feel it necessary to return my calls or simply answer the phone when people call them. So, I am really thinking that I am going to have to do some research and after 4/15 report them to someone for not following their guidelines. From the date of the IEP meeting they have an additional 15 days to start whatever program is written in there. What I am really thinking is that they are trying to put it off as long as possible so they don't have to deal with him until next school year. I am sure you can imagine how angry I am about that. I am going to do some research this weekend to see who I need to report them to. I think they may just call me up at the last minute and tell me to come in for the meeting. The other thing is that my husband needs to give "reasonable notice" to take time off work...I hope the schools give us "reasonable notice." I really want to go up there and tell them exactly what I think of their crappy system and them trying to get out of educating my son...although I know that wouldn't do any good either.
Anyway, we started the fish oil gummys last week. I am not seeing any improvement yet, but since it doesn't hurt him, we will keep him on it and hope for the best.
Potty training is going pretty well. Arden doesn't care about his stickers for peeing anymore, but is all about his racecars he gets for pooping. Since he has quite a collection of cars, I started taking some of the old ones and putting them in his prize bag so it isn't costing us anything to keep up with the prizes that he likes. He is doing very well when we are home, but not well when we go somewhere...I am sure it will improve with time, so we will just keep on working on it. Starting it was the hardest part.
Good luck with Jack! I hate it when Arden has his "clingy" stages. How exciting that the little one is talking!!! Keep in touch! |
| posted by Rhonda on 04/10/2008 03:26 PM
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Hi Sara-
Hadnt heard from you in a while and just wanted to touch base and see how Jack is doing.
-Rhonda
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| posted by Rhonda on 05/06/2008 11:58 AM
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Hey Rhonda and everybody else, its nice to see this board getting some members. It is so important for us to have other parents to talk to.
Well not a whole lot to report since last time. Jack has added a few words like shoes, which comes out like dooes, but we understand him. He also said two for the first time the other day when I asked him how old he was, again came out like doo.
We have an appointment for his evaulation and IEP next month and I have been preparing for it. I know they are going to try and skip out on services because the school in my district offers like no services and we are in a very rural area so the nearest elementary is 20 mile from here.
Jack is still getting very frusturated and the tantrums havent stopped. He is also getting very aggresive with other children so we are working on that. I have been encouraging him to atleast sign to the other kids if he cant find words, most of the time when he does that it gets the other kids attention and I can step in and help. I try and let him work out his problems without me as much as possible, but sometimes he need my help.
I have been considering putting him in a daycare a couple days a week with deaf children and see how he responds. I think he would flourish being able to sign to other kids and have them understand. I also want him to be around speaking kids to have that influence.
Jacks OT wants to test him for the autism because he is "exibiting declining social behaviour". I think he is just frusturated.
Anyways I will try to check in more often. How is Ardens therapy going? |
| posted by luvmyboys on 05/09/2008 06:15 PM
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You know, it is funny when Arden say shoes it comes out doo also (he doesnt say the s though, and he also says two the same way). I am always so glad that when we are able to understand anything he says. When is Jack turning 3? I have found our IEP meeting very frustrating! I posted about it under IEP questions, but it was the closest thing to a nightmare I have encountered! When is the IEP scheduled for? I did a ton of research on them and accessed all the resources I could and I still felt ill prepared for the actual meeting!
I have read that frustration and aggression go hand in hand with apraxia, so I would definitely think that is probably what is going on with Jack. I would think any of us would feel the same way if we had something we wanted to say, but no one understood what it was, or we couldnt express our feelings adequately.
I have a hard time with Arden when others cant understand what he is trying to tell them. I am so protective of my baby, you know, and I get so upset sometimes when other kids ignore him when they cant understand him and he is trying to communicate. I am really learning that being a parent is a big challenge sometimes :-)
I think it would be great if you were able to find a daycare with other children who sign. I agree it would help Jack with signing, and may be able to alleviate a lot of the frustration he is feeling. Maybe some type of combination of daycare with deaf children and playgroups with children who are verbal or something
Ardens therapy is going okay. He loves going, but really is being resistant to practicing anything at home with me or his dad. It has been a challenge lately since I know the more we practice the faster things should progress, but he just doesnt want to practice, and that is one thing I really havent found a way to make him do. Progress isnt being made fast enough for me, so we are kinda in a rough patch right now.
How long has Jack had therapy for? Have you seen a lot of progress in that time?
-Rhonda
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| posted by Rhonda on 05/09/2008 11:53 PM
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Wow, its so crazy going back and reading this old post and comparing then to now! Jack is saying so many more words then he was in april and may, and I have it written down right here to remember. One thing I did notice is I wrote a few months ago that Jack was working on saying Tra for train but I dont ever remember him saying the T sound yet, even now.
Anyways, things have been busy here. Jack is still going to school 3 days a week but his teachers want him to start going 4 days. I have definatly seen progress in his speech over the last month. He still cant combine words unless I am using flash cards, and then it is only certain words, like if I hold up a picture of eyes right next to a picture of a cup of tea he can look at each picture and say eye..........tea, but it is still a huge step in the right direction.
I have noticed a change in him as well, he seems to be much more excited about trying, where before he hated to practice speech. He seems to get real proud of himself now. Plus he has made some friends in his little class with apraxia and they seem like peas in a pod together.
Tyler my youngest still isnt making much progress, hw will be 18 months next week and says mama, ball, no and yeah. I feel like he should be saying alot more then that, I know though that his biggest influence is Jack and that has a huge impact on him. I am going to bring it up to his ped at his 18 month check up.
OK well gotta go to bed soon. We had a big day today, we took Jack bowling for the first time and he LOVED it! he even got a strike!
I hope to start checking in more often. How is everyone one doing? Sara |
| posted by luvmyboys on 10/15/2008 03:20 AM
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