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MyBlueLobsters

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Posts posted by MyBlueLobsters

    Does your scool have an official name?

    in General Education Discussion Board

    Posted

    I wanted to come up with a name for a few different reasons. There are some days when I get the question "Why aren't you in school?" and I just don't have the time or energy to explain. I will say "They attend ________ and they are off today" or whatever. Second, I wanted to have a name for scrapbooking purposes lol.....silly I know. ANYWAY, so if you have a name, tell us! I want to hear!

     

    Our is Grace Covenant Academy

    Really upset...WWYD?

    in General Education Discussion Board

    Posted

    First off, thanks SOO much for the support and cyber hugs! I know in the scheme of things that could be 'wrong' this is not that big of deal, just got me down today. I will do my best to answer all the questions asked! Thanks again! You are all the best! :grouphug:

     

     

     

    Can your ST be your advocate with the Cleft palate team ST? I'm a ST myself (at least before homeschooling) and if I was your ST I'd be a calling the Cleft palate team. I just now read your blog, so I see your ST was with you at the consult. What did she say to the other ST? Did she tell you what she thought of the eval? How exactly is Logan communicating right now? How severe is his Down Syndrome? I really feel for you! This is very frustrating to say the least. Jacqui

     

    Yes, my SLP said she can call if I bring in the report. Logan's SLP was not happy with the appt. She was actually in tears too! Logan's expressive language skills are at a 13 month old level (he is 41 months old) but his receptive language skills are solid to 24 months and scattered to 36 months. He seems to understand, but can't verbalize. His cognitive skills are also solid to 30 months with scattering up to 36 months.

     

    If I were you, I would do everything I could to research cleft palate and Down's Syndrome (and how it may affect speech).

     

    Unfortunatley, having both Down Syndrome and a cleft palate is not ALL that common. But, I did read that kids who do have both, are at a higher risk for needing another surgery. I don't think Logan's cleft palate team are used to seeing a child with both a cleft and DS.

     

    What about talking to the person who wrote that evaluation? Maybe you could say you are surprised by the report and don't feel your son is speaking very clearly. Maybe she could reconsider what she wrote.

     

    I can't think of anything else except perhaps hiring another person to evaluate? Or does that person HAVE to be the one to evaluate?

     

     

    I think I might make Logan's speech therapist do that! LOL I didn't think of hiring a different person do evaul, besides Logan's SLP....good idea. I don't know how much stock his surgeon would put in it...but it's worth a shot! Thanks!

     

     

    I am so sorry to hear you are going through this.

    Have you talked to your speech therapist for advice. I think first see what help she can come up with for you. If for some reason she cannot get the team to co-operate you may need to go to the more difficult task of traveling where ever you need to , to another more helpful team in another city. But she what your ST thinks and if possible, ask the surgeon where and who some other teams are that you could get another opinion from because you really don't agree with this decision.

     

    There are other cleft teams around that our insurance doens't cover! UGH! I MAY have found one (I have been doing some digging this afternoon) about 3 hours away, so that woudln't be all bad! Thanks!

     

    I have no personal experience working through these issues, so this may be naive, but I think I would be working my way up the chain of command. I would get documentation from the speech therapist and then ask the cleft team to reconsider their report and recommendations. If they're not willing to, go to their supervisor, and then their supervisor, etc....someone licensed this person/people, so they're accountable to someone, a board, a clinic, etc. Your son deserves to get their help, and they might be the only team in the area, but that can't make them untouchable.

     

    Good luck. :)

     

    We have already taken another Dr to the board of the hospital twice (oops) for a botched stomach surgery he did. So they are familiar with us! :lol: I just hate to get a bad reputation with ALL of Logan's Drs! LOL However, things get accomplished that way!

     

     

    Emily,

     

    where are you? do you have a down syndrom support group in your area, your state. They may have a listserv where you can direct questions and get suggestions for help in your area.

     

    Betty

     

     

    I am in the Kansas City area. Most of the local people here have had bad expierences with our local children's hospital. They advise leaving to another city...but with the insurance, that is REALLY hard!

     

    And for all the things your son has been through....:grouphug: Sometimes I just want to punch the Drs! You would think that for someone who has taken a 'do no harm' oath, they could be a little (or LOT) more sensitive and professional!!

     

    And Remudamom...I do need to take you to my appts! :D You can dish out a big ole can of whoop-hiney on them!

    Really upset...WWYD?

    in General Education Discussion Board

    Posted

    I can not go into full history because of time...but...a shortned version. Logan was born with a cleft palate. He had his first repair done when he was 1. Since then, he can not make any 'hard' consonant sounds like "B" "P" "T"....so on. He can do "m" and "n" very well as they are nasal sounds. We were told that there was a possibilty of him needing a 2nd surgery before he could talk. He is now 3.5, so 2.5 years after his repair and he still gets food caught in his nose, can't talk, and is super 'nasally' sounding when he talks. We (his speech therapist and myself) took him to the cleft palate team in July. It was a HORRID day. (if you want to read about it...here is my blog entry http://weblog.xanga.com/Beezers_Buzz/667619205/logans-cleft-palate-appt.html)

     

    So, I just got the report and the cleft palate team speech therapist who evaluated him put totally false info on the report. She said he can make hard sounds, he did not sound nasally, and that he just didn't understand how to talk. I am SO mad...upset....I don't even know what. What can I do? Her evaluation plays huge into what the surgeon is willing to do to help him. There is not another cleft team in our area, so we can't just get a second opinion. I want to call and rip this lady a new one...but at the same time, I don't want to tick them off since they ARE the only cleft team around. Also, I am just so sad at how they are treating Logan (if you read my blog, you can see how they totally assumed he is mentally unable to do almost anything just because he has Down Syndrome :( ) How do you think I should handle this? WWYD if this was your child?

     

    Thanks for letting me whine....you can pass some cheese to go with it if you want....;)

    Okay...I'm doing it....can you see me?

    in General Education Discussion Board

    Posted

    Yay for you! Applause all around!

     

    Now you can post on the daily exercise threads. We are a very encouraging group.

     

    I usually walk outdoors, but just as I headed out this afternoon, the rain came down. Since I'm made of sugar, I thought I might melt. :D Instead, I headed upstairs to the bonus room and my exercise bike. Normally, I take magazines or a book to read, but today, I listened to an audio book on my iPod and watched the rain out the window. It was a good workout!

     

    Every step on that treadmill is a victory!

     

     

    OOooo, I will keep my eyes out for that! I hadn't noticed that thread before.....I need all the encouragment I can get!

    Cleavage

    in General Education Discussion Board

    Posted

    Am I an old fuddy-duddy?

     

    Everywhere I go I see women (even ones as old as I am) and teenage girls wearing low-cut tops revealing plenty of cleavage.

     

    It isn't attractive to me (perhaps I should be grateful for this, seeing as I'm female?), and it looks downright suggestive. I won't let DD wear any tops like that, but they certainly are popular at her school.

     

    What do you all think about this? Am I woefully behind the times, or is wearing these kinds of tops in poor taste? Or what? ("Or other" didn't sound right.)

     

    What gets to me is that sometimes right after I see a woman or girl dressed like this, I see a teenaged boy with his pants falling off, showing either his underwear or his own cleavage (different end).

     

    RC

     

     

    I didn't read the other posts, but I agree. I'm not in favor or showing my or seeing other womens (or teenage boys 'other end') cleavage. Add me to the Fuddy Duddy list.

    CC: When things are going bad...

    in General Education Discussion Board

    Posted

    Isaiah 40:28-31

     

    28Have you not known? Have you not heard?The LORD is the everlasting God,

    the Creator of the ends of the earth.

    He does not faint or grow weary;

    his understanding is unsearchable.

    29He gives power to the faint,

    and to him who has no might he increases strength.

    30Even youths shall faint and be weary,

    and young men shall fall exhausted;

    31but they who wait for the LORD shall renew their strength;

    they shall mount up with wings like eagles;

    they shall run and not be weary;

    they shall walk and not faint.

    Prayer request

    in General Education Discussion Board

    Posted

    I have macular degeneration( was diagnosed 14 years ago) and I got a bad report from the doctor this week. I know God is bigger than this disease and I'd like to ask you all to lift this up to the Lord; that I have no vision changes now and in the future. I have to see a retinal specialist in a few weeks and I'd like to find out some answers to why and what exactly is going on.

     

     

    :grouphug:Many prayers..... :grouphug:

    I blinked and it happened...she's 8!

    in General Education Discussion Board

    Posted

    My baby girl is 8 today. :( How DOES time travel so fast? She was such a stinker! Now she's a caring little squirt though she's still really full of life and energy. She had a unicorn party with 5 friends. She hasn't had a "big" party in years and she's was bouncing off the walls. She's playing with her new Forest House Playmobil. I'm pooped. Just stopped in to change my sig line and veg out briefly before falling into bed. 8! Unbelievable!

     

    Thanks for listening.

     

     

    My oldest is almost 8....I don't know how time can go that fast....:grouphug:

     

    HAPPY BIRTHDAY!!!!!!

    Homemade bread?

    in General Education Discussion Board

    Posted

    Does anyone have a good recipe for homemade bread that is the consistency of a store bought bread? I am thinking of starting to bake my own bread, but sometimes the consistency of bread I've made in the past is really...dense. Plus it's full of airy holes...so cutting it thin and making sandwhiches out of it is almost impossible. Anyone have a great recipe to share? TIA!

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