# Special needs children



## Julie (Feb 8, 2007)

Oh Cherie......I'm so sorry.Goodness an accident too that day.Hopefully your son recovered from the accident etc.My Grandma used to say bad things happen in 3's.I always pray she was wrong!:angel: Most times 1 bad thing a day is plenty for me!And if it can skip a few days----Whoppee!Know what I mean?
Do you have a special needs child too?I have 1 who is 6.........

I just wanted to start a thread where we could chat and encourage each other---outside of the "different breeds "thread.I hope if any of you have any advice you will post it,as it can a very lonely thing trying to raise a special needs child.:grouphug:


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## tejanoHavs (Aug 5, 2006)

Julie said:


> Do you have a special needs child too?I have 1 who is 6.........


Yes, our oldest, Jason, has Duchenne Muscular Dystrophy. He was diagnosed at 4 and we were told he would be lucky to live until 16. He will be 25 this October and still just enjoys life! We are truly so blessed and I'm so happy he is proving those doctors wrong 

He uses a power wheelchair full time and we have lots of adaptive aids here at home. At night he uses a ventilator to help rest his lungs to help with breathing. We see lots of specialists, but he has only been in the hospital 3 times. Each time was very critical with respiratory failure. And each time happened in August. We managed to skip last August and hopefully will do the same this year. I'll never forget the first time he was in the hospital years ago and the Havanese community flooded his room with postcards from all over. We had them taped to the walls and windows of his hospital room and it cheered him up so much. Hav folks really are the best you know :grouphug:

You'll have to tell me about your special needs child. I talk all the time with families who are newly diagnosed or who have other children with special needs. It is such a confusing maze to navigate with schools and all sorts of programs. Sometimes you don't even know enough to begin to ask the right questions. I learned quickly that I am Jason's best advocate!


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## havanesebyha (Apr 25, 2007)

tejanoHavs said:


> Yes, our oldest, Jason, has Duchenne Muscular Dystrophy. He was diagnosed at 4 and we were told he would be lucky to live until 16. He will be 25 this October and still just enjoys life! We are truly so blessed and I'm so happy he is proving those doctors wrong
> 
> He uses a power wheelchair full time and we have lots of adaptive aids here at home. At night he uses a ventilator to help rest his lungs to help with breathing. We see lots of specialists, but he has only been in the hospital 3 times. Each time was very critical with respiratory failure. And each time happened in August. We managed to skip last August and hopefully will do the same this year. I'll never forget the first time he was in the hospital years ago and the Havanese community flooded his room with postcards from all over. We had them taped to the walls and windows of his hospital room and it cheered him up so much. Hav folks really are the best you know :grouphug:
> 
> You'll have to tell me about your special needs child. I talk all the time with families who are newly diagnosed or who have other children with special needs. It is such a confusing maze to navigate with schools and all sorts of programs. Sometimes you don't even know enough to begin to ask the right questions. I learned quickly that I am Jason's best advocate!


Cherie,

What an incredible woman you are! My heart goes out to you for all you have done for your son Jason. He is one lucky young man and I'm sure he knows how much you love him and take such good care of him.

My middle son is a special needs child and had meninjitas at 2 months old. You know you are so right, we as parents have to be our child's best advocate as know one else will.

That is so super you have such a strong support group from the Havanese community.

Libby


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## Julie (Feb 8, 2007)

Cherie,
My little boy is truly a miracle.I had 2 children and thought I was done!At 36 I got pregnant with Robbie.I found out on my 37 th birthday.We went through alot during the pregnancy-low aminoitic fluid and then none...bleeding and bedrest etc.They did a test called CVS and said he would have mosiac trisomy 8.Most children they said live only a short time with this.I almost terminated the pregnancy as I didn't think I could deal with burying a child just after my Dad passed away(in March).The doctors said if they took him he would die(way too early) and if they left him in,he would die(no aminotic fluid).He proved them wrong,as I made it another 4 weeks and he was taken at 29 weeks.He weighed 2lbs.9 oz. and was doing great till he got pneumonia.He stayed in the hospitals for 3 mo.They never gave us any idea he would be different then other kids.Oh-------they tested him for Mosiac Trisomy 8......he did NOT have it!They were wrong!All his chromosones are in order.Now he is 6 and he is developmentally delayed.He is more like a 2-3 year old.He has a lazy eye and bi-focal glasses.He has a weak leg on his left(he wore a brace,but not currently)but he can walk and hop and get around pretty well.They tell me he will never run normally.He tends to tip toe on that left foot.He has a very good memory,and memorizes wierd things.....like commercials,fundraisers and foundation talk from Iowa Public Television,some books etc.He is still a baby in alot of ways.He still wears diapers and we feed him.He does not eat well.He is now average heighth,but very thin.He has alot of tone in his hands,but it is getting better(part in thanks to Quincy),but he has alot of trouble managing a spoon etc.It is very difficult to raise a child like this...the hardest thing I ever have tried to do.Sometimes I can take it in stride,other times I struggle alot.We do not know what Robbie has exactly......I suspect he could have some celebral palsy or autism.He does have some signs of obessive/compulsive disorder.The doctors to date have been reluctant to diagnose him with anything other then "delays due to prematurity".If you have any advice---I'm all ears!:ear:


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## Thumper (Feb 18, 2007)

Cherie, Libby, Julie :grouphug:

How ironic that we all have a special needs child. Mine a bilateral cleft lip/palate and has had 16 surgeries, I just mentioned him in a previous thread. I'm self employed and up and moved to where the TOP surgeons in the country are. 

Ladies, we could start a "Group" in the new section of the forum. Its nice to talk to other parents that know what its like.

hugs, 
Kara


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## Kathy (Nov 9, 2006)

Julie,
I also have a 25 year old son that has Cerebral Palsy. He was 2 years old before he was diagnosed. We found out the day I found out I was pregnant with our 3rd child. Talk about scared, I had no idea what CP was to be honest.

That is when I went in "research mode" and have been the same ever since. We are our special needs children's ONLY advocate. We were told that Bryan would never walk. Well, he is walking just fun, in fact he runs too! When Bryan was a young child, all he wished for was to be able to run. He didn't walk independently until he was 5 years old. We know now, since science and technology has come so far, that Bryan's CP was caused by 1 tiny brain cell not migrating like it should have. Bryan is considered to be mild, however, he won't ever work. He is very bright though. He is a wonderful young man and has blessed our lives in so many ways. I have never met a man as great or wonderful and filled with the Holy Spirit like Bryan. My hubby is close though. <grin>

The best advise I can give is to never give up and to fight for what is right. You know your child better then anyone!!!! Don't ever let anyone tell you otherwise, especially the so called "specialist". <grin> The hardest part for us was dealing with the schools. Bryan paved the way for other disabled children in our district. Being the "guinea pig" was not easy at times, but I never gave up. Getting our elected officials involved helped a lot too when getting SSI for him. That is another story!

Hang in there, and know you are not alone.


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## Julie (Feb 8, 2007)

Wow......you too Kathy...I have felt alone,but I'm feeling better now.Could you all just move into my neighborhood and bring your havs too?!?The schools are tough to deal with.Robbie had a full time associate last year and was the first one they had to bus between schools because they didn't have a special education teacher qualified to keep him in the kindergarten.I guess he will pave some more roads because this fall he will stay at the older kids elementary and transition in and out of 2nd grade instead of 1st grade.He is in with 5th graders in the special education room.They seem good....but who knows......it is just tough.This is a picture of my Robbie man(Robert-named after my Dad)eating one of his favorite messy things---crunchy cheetos!Notice who is "standing by" just in case he would drop one..........


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## havanesebyha (Apr 25, 2007)

Julie, Cherie, Kathy & Kara,

My middle son, Benjamin, turns 20 years old this October! My husband and I have fought for him all his life. He had meninjitas at 2 months old and we almost lost him. It was devastating watching our tiny baby lie there and barely cry. This affected his motor control, fine and large, & because of his bad eyes he was in special education throughout his schooling years. He struggles now in college, but he is in college - which I never thought would happen! He is very bright but has a lot of learning disabilities. The school system wanted him on drugs to cope but we wanted him to be coherant and fought this. We babied him so much as we were so afraid he might fall or hurt himself. His judgement is poor and I know I hold him back, but I am afraid to let go too much. I am very proud of how much Benjamin has accomplished and he is now hoping for surgery for his eyes once he has fully grown at 21. The doctors have promised him this his whole life and I know once he turns 21 he will be in that doctors office to get his full eye site back!!!

Julie your son is still so young and Kathy is so right that you have to fight and be his best advocate! With technology now he should have more possibilities in school. You can do it, to make your child's life a better place to be! 

Libby :grouphug:


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## Julie (Feb 8, 2007)

Libby,
I have a Benjamin too!My oldest son is Benjamin.He graduated high school in May.He turned 19 the end of June.He is enrolled in college for this fall.He is a very gifted kid,but had the opposite problem---everything came easy for him,so he didn't really apply himself.
We also "baby"Robbie alot.Given his situation,he does get away with alot of stuff the others didn't.....I am trying to treat him like a regular kid,but my husband still caters to his every whim.......:frusty: It is tough.......


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## havanesebyha (Apr 25, 2007)

Wow Julie,

Both our Benjamin's are the same age! 

Be careful, now my other three children have come back and said we love Benjamin the best and favored him. Benjamin needs were the most needy, but yes you really have to watch that. He is the peace maker of the family so really has fallen into this position in the family. He has just started going to see a psychiatrist because he has such a low self esteem and no confidence. I hope he finds himself and I need to back off and let him fall like a normal child. Please feel free to PE me at any time - I sure know how you feel.

Libby


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## Sunnygirl (Jun 1, 2007)

That orange Cheetoh mouth looks very familiar; we see that a lot at our house. Julie, Robbie is a little cutie. As much as I love seeing pictures of everyone's Hav babies, it's nice to see pictures of the "other" children.


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## Kathy (Nov 9, 2006)

The schools are tough to deal with.Robbie had a full time associate last year and was the first one they had to bus between schools because they didn't have a special education teacher qualified to keep him in the kindergarten.

Julie,
If you want him in a regular ed class with children his own age and you think he needs an aid, it is the law the school district must provide for him. Now, it is also a battle to get the schools to do this, as they always throw out there that they don't have the money. I assume Ben has an IEP? I am sure that between Cherie and I we could help you. I have written so many of those it isn't funny. <grin> Feel free to email me privately if you want.

Benjamin is very handsome.


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## irnfit (Nov 21, 2006)

Julie, Robbie is a real cutie. I agree with Kathy. Don't let the schools get away with anything. Make sure you find out exactly what you are entitled to for your special needs child, and make sure they give it to him. It happened to my neighbor who didn't fight until it was too late, so she sold her house and moved. We have a smaller school district, so they always use that as an excuse. She moved to a much bigger school district where there would be more options available. Her daughter has been diagnosed as developmentally delayed and she acts like a 4 yr old and she will be 6.


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## good buddy (Feb 20, 2007)

You're all so strong to standing up for your children. You really DO have to be their strongest advocate and sometimes you'll be their only advocate! I don't have a special needs child~~but I was told I did and for years I worried! My middle son Kenneth was diagnosed with Tourette Syndrome when he was only in fourth grade. We went from our regular doctor to a neurologist and he was tested extensively. It came as quite a blow to us! We were told it may or may not progress... no way of telling how bad it could get. They wanted him on medication--some of the side effects were suicidal depression, sleeping all the time.. NO WAY! The schools wanted to put him in special ed classes too. We said NO! He seemed fine to us. He was a bit "different", maybe a bit slow...homework took alot of energy each night to keep him focused. He was mainstream classes until high school where he struggled and then I fought to get him into an Independant Study Program. He did well and even made honor roll. When he was getting old enough to drive a car, I started to get worried. I wondered if he was safe to put on the road. He seemed ok to me but he's always been a bit distacted. We took him back in to be tested for ANY and all problems to see just what the professionals could tell me. Because he was diagnosed very young, and I never wanted him to be concerned about it, we had kept fairly quiet about it with him. He had no idea what we were seeing the docs for when we took him in. I told him it was just a good idea since he was almost 18 to get a full work up. The results come back that he was fine! No Tourettes at all! He even tested above average intelligence! All those years I had worried for nothing, because of what the doctors had told me. Can you imagine how awful if I had let them dope him up with these medications? Stay strong and I really believe that a parent knows their child better than anyone else on the planet.


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## Julie (Feb 8, 2007)

Thank you all.Sometimes Robbie is" on" and acts like 4-5 years old....sometimes more 2-3.He does have an IEP.We have an agency AEA which oversees his education.I don't really understand how it works,but they are there when we meet with the school etc.They can be fiesty if they have to.The problem last year was they have a seperate room for kids with special needs in the kindergarten building,but he did not qualify to trans.in and out because that is funded through the state or something.Had I sent him to prep(before Kindergarten)he would of qualified.So he had a full time associate and caught a bus up to the kindergarten,went to "specials"(like Music,PE,Art)with the regular kids,then road another bus back to the older elementary to get one on one help with the special needs teacher there.She deals with much older kids though.To avoid all that this year,we are not going to have him in with the normal 1st graders at all.He will be trans.in and out with 2nd graders.The only thing that bothered me about this was seeing his little friends etc.but they said he didn't really have any anyway.OUCH.He stays to himself and is bonded to his associate.They originally wanted me to hold him back from Kindergarten,and send him to Prep.I rejected that as he would be almost 7 then in kindergarten.I told them no.....I worry about the other kids making fun of him.Some adults do it to us when I have him out and about.Sometimes it is difficult...it hurts and makes me angry.Have you all experienced this?People pointing,rolling eyes,jeering etc.?I love him a great deal,but sometimes it can be embarrasing.......


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## Thumper (Feb 18, 2007)

Julie said:


> Have you all experienced this?People pointing,rolling eyes,jeering etc.?I love him a great deal,but sometimes it can be embarrasing.......


Yes, I have dealt with that for years, and still do. Shamefully, it is MOSTLY adults that have inappropriate behavior. Yes, we had problems in elementary school with kids making fun of him. I even had one bus driver LAUGH at a joke that was made by another kid to Jake (my son) I was *LIVID* and you can only imagine what I said to that bus driver the next morning. He was driven to school by me from the rest of the year.

*sigh*

But now, he is 15 and has had several "girlfriends". He is popular now, and goes to a gifted "Pre-Med Academy High School program". He wants to be a plastic surgeon, I guess our doc really made an impression on him. We are very supportive of Operation Smile, and it would be pretty awesome to see my son go into that organization as a surgeon. That is his dream.

But still, to this day...I will see adults pointing at us and talking about him. It really has made me think on a deeper level in many regards. Its sad that so many people are so quick to judge other people that they don't even know. My son may look "slow" to other people, but the kid is _brilliant_.

You all have such empowering stories of parenthood. They have brought tears to my eyes today. Today has been tough, our pet Hamster died. My littlest son (11) was crushed. His tears brought me to tears...Stormy has been with us for 4 years and it has been so much fun watching Gucci and Stormy play! They actually LIKED each other, and look alot like (same coloring). Gucci would even let Stormy crawl on her!  So cute.

*sigh*

:focus: I guess I can use the analogy that a Hav is like an average looking nerdy person, and an HSD is like a Victoria Secret's supermodel? lol ound: Okay, bad joke. I'll shut my trap. hehe.

Hugs all,
Kara


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## dboudreau (Jan 12, 2007)

What an awesome bunch of people on this forum. It is so amazing how people from all walks of life and places can come together with a common interest and find how much more there is in common. Julie and I have been cyber friends for awhile and I have been at a lost on how to help. I am so pleased that there are such caring people here that can help. My hat goes off to you all. What a great bunch of parents.


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## Doggie Nut (Oct 20, 2006)

I have been so moved and blessed to read all of your posts about your children. What an amazing bunch of ladies you are! Sometimes we don't really know what we are made of until adversity strikes. I'm a firm believer that it's not the good times that reveal a person's true colors but the difficult ones. Our youngest daughter, Kynsie who is almost 27 (geez, makes me feel old to say that!)and married now has had seizure disorder since she was about 12. The neurologists decided the "spot" they found on the left side of her brain was congenital....an area that didn't develop in the womb. Because of this she has had learning difficulties and petit mal. Last month she had her first grand mal seizure in the middle of the night....her husband called us @ 2 am and he had called an ambulance.....it was scary.....took about 40 min. to bring her around. Since then her siezure activity has picked up and she hasn't been 100%....has gone several times to the emergency room with alarming symptoms. One Sunday she had all the signs of a stroke going on.....too scary. She has an appt. week after next with her neurologist. We are requesting a MRI & EEG since it has been about 11 yrs. since she had one. Interestingly enough...evidently the right side of her brain has compensated for the left because she is very artistic. Began playing the piano by ear at a very young age and is also a self taught guitar player. She writes & sings. Very gifted. Anyway sometimes when your children go through things like this you think you are the only one....your stories of courage, faith and perseverance have encouraged and uplifted me today! You gals ROCK!:rockon:


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## Julie (Feb 8, 2007)

Thanks Kara:hug:
It is nice to know I'm not the only one......this big world can feel really small sometimes.

What?Debbie---you think you're off the hook now?:nono: :hug: 

:ban: I'm gonna get kicked off here for hi-jacking the thread!:ban:


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## havanesebyha (Apr 25, 2007)

All of you about our 2 legged kids, let people look and comment and who cares... I know it is hard when it is your loved baby they are commenting on, but you know, what they say about people like those..."those people are insecure and want to put others down to boost themselves up". 

My daughter, Allison - now 25, has an eating disorder. When she was about 75 pounds (2 years ago) she went to a 7-11 store to buy her uncle some cigarettes - the clerk carded her and she showed him her ID. He laughed at her and told her no way that was her ID as she had "fat cheeks" and at the time her face was very thin. She called me up crying her eyes out all upset what this guy had said to her - at that point in her life she was in and out of the hospital and this really set her off. I told her to not even think about what he said as she doesn't even know him and who cares what he said. Her husband told her the same thing. Some people can be really cruel and not even think what they say. 

Majority of the children in Benjamin's schools were very good and didn't make fun of him - even when he would sit on the edge of his desk and then fall over on the floor. Benjamin's grade school was very good and had students get a "drivers license" to help push the children in wheel chairs and the kids were always very sweet to the one's in wheel chairs and played games with them and even helped them read or would read to them. I actually think it is more of the adults that are insecure with themselves and they are the laughers. 

We all know our children the best and all of us will fight for our babies no matter how old their are! They will always be our babies even when we are old! 

Thank you Debbie ~ well said ~ you are an awesome bunch on this forum!


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## havanesebyha (Apr 25, 2007)

Awh Vicki,

I wish you all the best with your daughter, Kynsie! I'm sure you all are so scared what the outcome will be. I have her in my thoughts and prayers and hope the doctors can control her seizures and she recovers quickly from the other night.

Libby


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## Doggie Nut (Oct 20, 2006)

Thank you Libby....she has alot of people praying for her so I know she will be just fine. They had a miscarriage in Dec. and it seems the increase of her hormones stirred up the seizure activity. They have already increased her meds but it may well be that she needs another increase. Whoever the DUMMIE was that said you are done raising your kids when they turn 18 and go off to college or whatever their life choice was either NOT a parent or a really out of touch parent! We have 4 children and 4 2/3(2 are expectant parents right now!) and I seem to "worry"(even though I know I shouldn't!) more now(the load has more than doubled!) than ever! :focus:


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## whitBmom (Nov 27, 2006)

Wow, you ladies are absolutely amazing and I look up to all of you. Vicki and all, I wouldn't worry about the topic, as it has become a more upbuilding topic instead - the way this forum should be. It is a shame that adults can act cruel and negligent, I always say "what goes around comes around" and I believe in that deeply.

Giant hugs and warm love from me to all of you. You ladies do rock!!


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## SMARTY (Apr 19, 2007)

I have been truly blessed with the minor things that I had to go through with my children, although at the time they did not seem so minor. My son had very crossed eyes that required a number of surgeries, the first when he was 4 weeks old. He was in glasses at the age of 11 months!!! He called them his lights, because they helped he see so much better. He has almost no depth perception, so he was never good at any of the ball type sports. He made up for in on bikes and dirt bikes. He is now a successful businessman, and has given me my beautiful grand daughter.

Our daughter had seizures, that the doctors could never pin point why. By the age of 5 she had out grown them. By then I had decided no more children. She now has her PHD, is a consultant and researcher in the field of autism. I really have been blessed.


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## MopTop Havanese (Sep 25, 2006)

Can I just say the Havanese people here are the best!? :whoo: 
My son (Carter who is almost 7) was severly delayed in speech and had lots of sensory/body awareness issues when he was younger. When he was 18 months old, he had the speech development of a 8 month old. He had 2 years of speech therapy and occupational therapy which helped him in incredible ways~! Most people would never know he every had any delays. He is going into 2nd grade this year, qualified for the GATE program and is reading at a 4th grade level. All this coming from the kid who didn't say a word his first 2 years~!! Not all disabilites can be seen from the outside.
My next door neighbor has a son who is Autistic. I have seen first hand how cruel people can be. It's just not fair. I think it's been the best gift for my children to grow up with a friend who has disablities. When my daughter was in 2nd grade her best friend was a little boy in a wheel chair (he had spina bifida). He has since moved to a new school and Brooklyn was so sad!
I think more parents need to teach their children that not everyone is perfect. That it's ok to ask questions, and learn every day about people with disabilities. God made us all different~


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## SMARTY (Apr 19, 2007)

Susan, my son had his last surgery last year to correct the lazy eye. This surgery had to be his decision as any slip could have caused a cock-eyed look that would have been worse. His problem was only noticeable when he was tired. There have been great advances in the last 10-20 years in what can be done. If anything bothers you at all I would urge you to consult a specialist. 
Helen, You are right thinking about my children puts everything into perspective.


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## Julie (Feb 8, 2007)

Thank you.......each and every one of you.You have brought tears to my eyes and made me feel better about my own son.:grouphug: He is such an amazing little guy(and wierd too!)LOL.Sometimes when I get to feeling extra bad I pull out a special box that contains Robbie's hospital momentos as a reminder.In it is a diaper that was too big for him,the size of a panty liner,a wrist band and leg band smaller than a quarter,many pictures of him hooked to tubes and monitors,but my favorite is his first bottle....he was considered a "big boy" when he could suck and swallow.The bottle was a tiny little thing like eye drops come in with a nipple on top.These things always help me realize how far he has come.It is sometimes hard to see others with children that can dance and run and play etc.I had two normal,regular children full term.....I do not know why God decided Robbie was to be different.He definitely is in love with music and lights....there must be something about music to these special kids...they seem to thrive with music.Robbie loves to memorize info- mercials on IPTV.He can tell you ver-badem the entire temperpedic bed,and most of the colon cleanse!When he started telling people at school about cleaning their colon......I did everything in my power to not ever have that one come on again!Every year when we set down for a new meeting with the teachers and AEA to set up his IEP---they ask me what my goal is for him.Ever year I say,for him to be normal....I want him to be able to be integrated in the room with all the other kids...they always look at me like I'm crazy....and one day a lady said to me why don't you have any other goals for him, you know realistically that will probably not happen.I told them I do,but till the day I die I will hope for him to have an average life where he can do the same things as others.I told her I still have hope---put yourself in my shoes...without hope what else do I have?Every year they read it out loud,every year I repeat it....I still have hope.........


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## Julie (Feb 8, 2007)

Vicki,
I hope your daughter seizures are diagnosed and understood,so she can continue on in her path........my prayers for you and your daughter..:angel:


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## Kathy (Nov 9, 2006)

Julie,
I understand exactly what you mean. There were many times over the years that I felt so alone and scared. What I found that worked for me though, was to turn that into anger towards those that were making me feel this, which in turn caused me to stand up for my son's right's.

It was so hard to watch other children run and play, while mine couldn't. One of the reason's we bought the house we still live in was because it was the first playground that we ever had been too or had seen that was built for disabled children!

Regarding how other's stare. I always held my head high and was just as proud of Bryan as my other children, actually maybe more so since he had the hardest hurdles to deal with. We discussed his disability openly in a positive way, so Bryan would learn to NOT be ashamed of himself. When Bryan was 5 years old, he and I went into a Carls jr for a treat one afternoon after a doctor's appt. At that time Bryan was using a walking to get around. When we walked in there was a mother and her daughter, about the same age as Bryan sitting at a booth eating. As Bryan and I walked past their table, the little girl asked her mother, "hey mommy, what is that thing that boy has?" The mother, said, "Shhhhhh, we will talk later." Well, Bryan heard all of this just as I did. He stopped and said to the mother, "That is ok, she can try out my walker if she would like too." Well, the mother was imbarrassed, but the daughter readily accepted his offer and they had fun together. It taught not only the mother something but more important the young girl.

The one line that always has helped me more then any other is:

_*God never gives us more then we are capable of handleing.*_

At times, it sure doesn't seem to be that way though. Now since Bryan is an adult, I feel helpless. He not only has CP, Simple Partial Seizures, but a sever learning disability, yet his IQ is very high. It makes it hard for him to work though or go to college.

Bryan though is always happy and has the ability to make anyone around feel happy and blessed too.


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## havanesebyha (Apr 25, 2007)

Kathy,

Can Bryan use a computer? Why I ask is that he could take classes online or how is he with his hands? I would think there is some kind of program he could go to for disabled adults that he could benefit from in Sacramento. I work at a private college in Moraga (Saint Mary's College of California) and I could ask Benjamin's Resource and Disability department if they know of anything for California residents if you would like? 

Kathy, I know it is hard watching your child grow up and being different from other children. But, you really said it when the little girl at Carl's Junior questioned Bryan's walker and that is good and more adults should not whisper, but be up front with people and ask, not whisper. I know exactly what you are talking about. Usually on a whole children are good with other children, it is the parents that need educating. 

Let me know if you want me to help. You know I really look forward meeting you as you sure have a heart of gold! 

Libby


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## radar_jones (May 6, 2007)

*Kudos*

I really think that you parents out there who are dedicated to the well being and support of your wonderful kids ought to have some sort of holiday dedicated to all the great work and sacrifice that you put forward to try and make a better life for the ones you love so dearly.

My Hat's Off to You All.....:thumb:


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## Melissa Miller (Aug 2, 2006)

I can move those threads over here if you want. At least I think I can. 
Let me know. That way you dont have to retype all that here. I think it was a great idea to start this thread, yall can all help each other!


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## Laurief (Nov 7, 2006)

I certainly agree that you guys are angels:angel: in disguise!! My husband and I are always saying how fortunate we have been with our children and god bless those of you who take care of those special children. We have a family member whos daughter was born around the same time my youngest was. My son, his cousin, and Grace were all born within 6 months of each other. As each child grew it became apparent that Grace was not developing like the boys and it turns out she had severe cerebral palsy. Unable to walk, talk, eat etc. Grace is now 17 years old, and still an active member in our family, she goes everywhere with the family and will be attending her cousins wedding next month. Her Mom & Dad are so committed to her and it is wonderful to see, and I commend all of you who care for these wonderful children. Maybe instead of Nursing homes, Lexi would do well at a school for special kids!! You Moms & Dad are out Angels!!!
Laurie


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## Julie (Feb 8, 2007)

I went ahead and asked Melissa to move the posts from the other thread if she could.Not today though.......it's her birthday!arty:

Kathy,
Last May we were at the playground where Robbie goes to school.There were 3-4 other kids playing there probably 10 yrs.old or so.We were just minding our own business,when the one boy said,"just watch,watch this retard"(meaning Robbie)...my oldest son was 17,pulled up on a Harley.They watched him like a hawk.He walked over and I told him those kids called Robbie a retard.He said hey.......Robbie,and pretended to ignore them,when they said something more,he just looked at them....and they went running off.They sat all together on the swings nearby and whispered and laughed etc.till my oldest son said,get outta here,you losers.....or something to that effect.The thing about this though.......how can a group of kids about 10 be more afraid of a 17 yr. old kid then the 2 adult parents with the child?How would of you guys handled it?I have never went back there,and never took Robbie to a playground since.My husband has,a time or 2,but I don't think he's comfortable either..........


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## Thumper (Feb 18, 2007)

Julie said:


> I went ahead and asked Melissa to move the posts from the other thread if she could.Not today though.......it's her birthday!arty:
> 
> Kathy,
> Last May we were at the playground where Robbie goes to school.There were 3-4 other kids playing there probably 10 yrs.old or so.We were just minding our own business,when the one boy said,"just watch,watch this retard"(meaning Robbie)...my oldest son was 17,pulled up on a Harley.They watched him like a hawk.He walked over and I told him those kids called Robbie a retard.He said hey.......Robbie,and pretended to ignore them,when they said something more,he just looked at them....and they went running off.They sat all together on the swings nearby and whispered and laughed etc.till my oldest son said,get outta here,you losers.....or something to that effect.The thing about this though.......how can a group of kids about 10 be more afraid of a 17 yr. old kid then the 2 adult parents with the child?How would of you guys handled it?I have never went back there,and never took Robbie to a playground since.My husband has,a time or 2,but I don't think he's comfortable either..........


Hmm..Honestly, I usually try to keep my cool and talk to my son about it and explain it to him that some people do and/or say things to belittle people in order to somehow make them feel better themselves, but there have been a few times where I've lost it.

I even called the police on one punky kid that attacked my son (for no reason) Turns out, the kid was just a punk and had already had a police record for marijuana! Egads. He was 13!

But honestly, it probably would've just depended on the day with me. One day, I may be cool and composed...but if something were to happen say...when I am pms-ing or flaring, I tend to be a little less understanding, especially with adults.

Children, yes...they will make error in judgement and that is a bit more tolerable because they are children..But adults, they should know better!! :frusty:

Jake (my son) has had alot of people call him retarded, but he's not. I think some of his "over-achieving" mentality is to prove to everyone otherwise. I wonder if he would be so motivated educationally had he not gone through so much of that when younger.

His IEP was for speech therapy, he also overcame his speech impediment too. No lisp anymore, If you talked to him on the phone, you'd never know he was born without a palate and a lip.

He amazes me. To have gone through so much, and he's still a child.

Kara


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## havanesebyha (Apr 25, 2007)

Hi Julie,

Robbie is such a cutie and looks like my Benjamin when he was in his early grade school years. As I look back at some of his pictures his glasses were huge though, not like Robbie's. Benjamin's glasses took up his whole face - which probably made him stick out even more as being different! 

That is what I was trying to get at last night - that children will listen to other children or their peers more than parents or adults. I don't know why, but they do. Obviously those 10 kids had never been brought up with any kids that had disabilities and they didn't know how to react. Good for your oldest son to show up, but you are so right that they wouldn't stop it in front of you, but carried on until your son drove them off. It is really a shame things have to be that way. Benjamin went to a grade school where the teachers encouraged the children to help those less fortunate and you know the special children really blossomed and so did the children helping them - it sure was a win win situation!


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## havanesebyha (Apr 25, 2007)

Kara,

These kids really amaze me of what they have gone through and how much they have accomplished. Your son really sounds like a fine young man that really has proven he can overcome anything. You know, it may sound strange, but I feel overcoming obstacles like our children have done has made them a better person than ones who are super spoiled and don't do anything to help others or themselves. 

Yeah, to your son for accomplishing so much at his young age and yeah to all of our children for coming so far!

Libby


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## havanesebyha (Apr 25, 2007)

*HAPPY BIRTHDAY MELISSA!!!!

:drum: :wave: :cheer2: arty: *

Libby & Kohana


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## Julie (Feb 8, 2007)

eace: Way to go eace: For your son Kara!I hope Robbie is able to overcome some of this and have a life where he can live on his own etc.Our school system says they work with the regular kids and most do not jeer etc.but we found out differently that day.Libby,there were 3-4 kids about 10 years old....Sometimes I want to say something mean and hateful back(okay,most all the time :biggrin1: )but I do my best not to.I think if they got me on the wrong day.........you'd probably be reading about me in the paper!:frusty: The thing is,you can tell from looking at Robbie he isn't just quite right,you know?He DOESN'T have that "down syndrome look"but he is tall and dangly and has bi-focals.Why as another person,wouldn't you feel empathy just automatically?I do.I feel like that towards every special needs child.I don't know why I do either....I was never around any as I grew up.Do you think it was taught in our generation or something?


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## SMARTY (Apr 19, 2007)

It used to bother me so much when my son was small and people questioned why his eye was patched or he had a red lens in his glasses. It got to the point he would lay his little head down on the shopping cart so people would not notice. I finally had enough so I would answer that we are in the process of correcting his eyes, and then say something like,” too bad your parents didn't take the time to teach you any manners" or 'why in the world would you wear that shirt with those paints", My son really started to like it when we did this we would laugh at the expressions on the peoples faces. His favorite was "Do you wear your hair that way on purpose (or make up or pants or whatever came to mind)”. If you look you can find something with everyone. He understood you only do this when people are rude to you, you cannot change them but you can give them something to think about for the remainder of the day. 

One lady said “Why would you say that to me?” and I ask why she said something to me about my son as if he was not there. Her answer was “I did not think”. Our answer was “We did!”, and laughed all through the store.

I think my son learned some very good lesson from these times. He is extremely thoughtful and caring. But he always tells things the way they are. His wife found out very early in their relationship do not ask a question that you really do not want an answer to.


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## Julie (Feb 8, 2007)

Sandi-------that is good.I like it!I love it!We will try that for sure...........

One time I was in Walmart with my oldest boy and Robbie.Robbie was a baby and just off oxygen and people were gathered at the checkout.I overheard someone say "look at that older lady with that young boy""look they have a baby together".My son was 13,but did look about 17.........I was just floored.I did not know what to do,but I put my arm around his waist and said come on Benjamin(I'm thinking) and Benjamin says kinda loud.......Hey Mom,can I get this?They almost crapped their pants!I certainly had a big grin on my face that day!I hadn't realized till later Benjamin had heard it to.Poor kid!:croc:


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## Leeann (Feb 28, 2007)

You women are truly remarkable. 

I have had several kids/adults with special need touch my heart in the last 12 yrs. thanks to the company I work for.
I work for a small company with about 30 employees in a city. The city we work in has a program for special needs children, adults and also battered women. My company participates in Part of the program that helps people after there education is done to transition to the work place and learn to support and take care of themselves. My boss will always find something to do for the school so they can bring a crew of 5 - 10 kids in with a supervisor to help work & teach them how to work for a company. We have had some really great people come and work for us and some have actually stayed on with us after there program was over. We currently have 3 part time and 2 full time employees whom we have hired to work for us from this program. Our part time people are only allowed to work 3-5 hrs a day due to their handicap and/or help from the state they get to help support themselves, we would hire them on full time if we could. 

Oh and they all love it when I bring my boys to work and are always bugging me to bring them back. Riley & Monte LOVE the attention.


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## Kathy (Nov 9, 2006)

Julie said:


> I went ahead and asked Melissa to move the posts from the other thread if she could.Not today though.......it's her birthday!arty:
> 
> Kathy,
> Last May we were at the playground where Robbie goes to school.There were 3-4 other kids playing there probably 10 yrs.old or so.We were just minding our own business,when the one boy said,"just watch,watch this retard"(meaning Robbie)...my oldest son was 17,pulled up on a Harley.They watched him like a hawk.He walked over and I told him those kids called Robbie a retard.He said hey.......Robbie,and pretended to ignore them,when they said something more,he just looked at them....and they went running off.They sat all together on the swings nearby and whispered and laughed etc.till my oldest son said,get outta here,you losers.....or something to that effect.The thing about this though.......how can a group of kids about 10 be more afraid of a 17 yr. old kid then the 2 adult parents with the child?How would of you guys handled it?I have never went back there,and never took Robbie to a playground since.My husband has,a time or 2,but I don't think he's comfortable either..........


Julie,
I would have walked over to them myself and asked them why they were being rude and give them a good talk about manners. Something I would bet they haven't been taught. Why your son had more impact then you or your hubby is because these kids probably don't have respect for their parents, but they fear older teens based on what they have to deal with in their own lives. Depending on their response, would determine then what would come out of my mouth next. I treat all children as if they were mine. When I see kids being rude or ugly anywhere, I speak up. I believe it "takes a whole community to raise a child" attitude. Once I confront the issue, it really is better in the end for all concerned. It also shows your son you will stand up for him and that you don't agree with what these terrible kids are saying about him. I am sure he probably heard them too.

Something we did for Bryan when he was in regular ed starting in 1st grade, was to have a lady that knew Bryan very well and about CP in general come to his class and explain to the children about his special needs and feelings. It was wonderful, because it helped the children to understand that Bryan also had feelings and wasn't too different from them, and how they could help him.


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## Julie (Feb 8, 2007)

You know Kathy,I know you are right.....my fear was I was so angry that I would of said something bad or it would escalate.When someone is making fun or calling names or whatever to your child,I don't know if it is a "mom reflex" or what-but you just want to protect them.I do not think Robbie "got-it" but I do not really know.......


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## Leslie (Feb 28, 2007)

Sorry I'm so late in joining this thread, but I've been dealing w/a sick puppy all week  Check out the thread "Shadow's sick", for details.

As for special needs kids, I think I can speak to that. I have a 29 year old son who is legally blind, a 3 and 1/2 year old granddaughter whose diagnosis is "global developmentally delayed" and weighs only 24 lbs.(we know about the stares) On top of that, I've been a special education teacher for almost 20 years! As you can see, I've been in the "special" world for a l-o-n-g time. I totally understand the alone feeling; the frustration and difficulty dealing with school issues, specialists, IEPs, therapy schedules, etc.; and hurtful, uneducated people who don't understand or care what the problem is. I do know you are all to be commended and honored for doing _the most difficult job in the world_...raising a special needs child.

God bless you!


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## Thumper (Feb 18, 2007)

Leslie,

You have alot of experience with special needs children. 20 years in Special Education?







That is quite commendable!

Julie, I love the story about the couple in Walmart! ound: I bet they felt about knee high to a grasshopper!

Everyone always thinks that my oldest daughter is my sister. It is quite flattering! The best one yet...was last week at Petsmart, some man asked us if we were "twins"! My daughter almost fell over. Gotta love it'.

Oh....and, have you seen my 7 beautiful children?


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## TnTWalter (May 9, 2007)

*sorry for 'eavesdropping'*

just wanted to say I am in awe of all you wonderful moms. I cannot begin to imagine how you do it. It is truly inspiring.

Big :grouphug:

And love seeing pics of people's human children. 

Trish


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## Julie (Feb 8, 2007)

What a great picture of your kids Kara!A fine looking group........I can see where they thought you might be twins or sisters..your daughter does look like you.....alot! 

Trish-everyone is welcome--whether you have a special needs child or not!Maybe you would have some great advice?Jump in........eace: 

Leslie-I'm glad you caught up and found this thread....Your little grand daughter must be a skinny little one,like my Robbie.


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## Leslie (Feb 28, 2007)

Kara- What a beautiful group. I definitely see why folks would think you and your daughter are sisters. You're both very pretty  

Julie- My little Hannah is just plain tiny. Even though she's almost 4 (in Sept.) she is just now beginning to wear size 2T. She has just made it back on to the growth charts. She declined to the 1st %ile at 7 mos. of age and by 9 mos. she wasn't even on them. She is currently the size of an average 2 yr. old, which is a bit of a blessing. Since she's so small, folks don't often think her behavior and general functioning is "off". We do get the stares when we tell them she's almost 4, though.


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## Julie (Feb 8, 2007)

Hannah is absolutely ADORABLE!You know that is funny...when spring rolled around here,we had a few hot days before school got out.I dug out some of Robbie's clothes and was sorting them out.I came across 4T elastic waist shorts and told my husband,well these won't fit anymore.......pretty soon my pile was empty,so I decided to just try on a short.Believe or not---they finally fit him!He is the only kid I have ever known that could actually fit something long enough to actually wear it out!It is so very strange.His diaper helped keep them up and on........in fact,the shirt he wore on the 4th of July was the same one for the past 3 yrs.!For pants he needs a 6 for length,but a slim is too big around so I have to sew in about 1 1/2-2" each side.He really shot up the last year or so.I bet Hannah will too.Robbie wasn't on the charts either........was Hannah a preemie?


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## Leslie (Feb 28, 2007)

Julie- Hannah wears out her clothes before she outgrows them, too. The shorts that are fitting her best this summer are size 12 mos. Her 4th of July outfit was on it's 2nd year and from the looks of it she may wear it again next yr.

I know what you mean about the "diaper hold up". If it wasn't for the diaper, most, if not all, of her pants would fall down. She does have a really cute pair of overalls she wears, but it's such a pain to change her diaper when she's wearing them... One thing we do for Hannah's pants is to add lace or other cute fabric to the bottom so she can wear the smaller sizes that fit around but are too short. Cute for a girl, but not an answer for a boy. It's also unfortunate Robbie doesn't have the option of dresses, that's another way Hannah manages to get around the clothes problem so well. Living here in SoCal, she can wear them pretty much year round, with tights, if needed.

No, she wasn't a preemie. She weighed 6 lb. 12 oz. at birth. She was my daughter's smallest of the 3, though. Hannah's weight was pretty good until she was 4 mo. old. At that time she "plateaued". She never really lost weight, just quit gaining. She was labeled "failure to thrive" and like I said earlier, she declined on the height and weight charts until she fell off completely. She was referred to a gastroenterologist at 7 mo. old, that's when it was discovered she has severe acid reflux (which makes sense w/her hypotonia diagnosis)

I'm enjoying sharing w/you about our very special kids. It's nice when someone else knows what life is like with them. I hope you'll continue to share your joys and frustrations. Who would've thought we'd have dogs _and_ kids in common???


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## Leslie (Feb 28, 2007)

Wanted you all to know I just started a group called Caring for "Very Special" Kids. Hope you'll come join me! :biggrin1:


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## mintchip (Apr 19, 2007)

havashadow said:


> Wanted you all to know I just started a group called Caring for "Very Special" Kids. Hope you'll come join me! :biggrin1:


Can teachers join as well?


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## havanesebyha (Apr 25, 2007)

Julie,

I know how you feel exactly!!! I went through this also with Benjamin and kids picking on him, calling him names, and yes I would correct parents, and adults, that made comments. But, people that aren't part of a family with disabled or different looking children don't think if it were on the other foot! Some people just don't know how to react so they are cruel acting! I had serious talks when he was older about cruel comments and we then just considered people who made comments ignorant and not worth wasting time talking to people like that. You know not everyone is perfect and each of us has some form of problem either in looks or health or something about ourselves that makes us each unique. I have very bad hearing and wear hearing aids and Benjamin has very bad eyes - But he has super good hearing that makes up for his poor vision! 

Libby


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## mintchip (Apr 19, 2007)

Has anyone read the Bill Cosby kids book (I think it is called "The Meanest Thing to Say)Sorry I can't remember the exact title but it is great.


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## Leslie (Feb 28, 2007)

mintchip said:


> Can teachers join as well?


Absolutely!!! All are :welcome: Besides being a mother and grandmother of special needs kids, I am a special education teacher, too. I would like anyone who knows and loves these wonderful kids (and adults...my son is now 29!) to join in and share. :hug:


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## Judy A (Jan 13, 2007)

I'm late in joining this thread as well. I commend all the parents here that have found their life taking a different direction due to a special needs child. My younger sister turned 51 this year and has CP and mild mental retardation. She lives on her own with some help with finances, grocery shopping and cleaning. My parents started a special school in our town of 9000 back in 1963. I taught at the school for 15 years, but it closed in 1995. The school had grown into a corporation with group homes for kids and adults, an adult workshop, 0-3 classrooms and diagnostic teams, transportation, and developemental day training program. The public schools took over the education of the school age children. Anyway, I have been in special education for 26 years, but I've always been a sister to a special needs child.....a blessing to me and to my family.

We have a theraputic(sp?) horseback riding facility in our community. I would strongly suggest you all look into that in your areas. I volunteer at ours and the success I've seen with the kids is priceless. If you've never heard of this, google it and do some research. It's really a great program.

Again, I commend all of you. As a teacher, it's good to be reminded what it's like at home to keep things in perspective. 

Blessings to you all....
Judy


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## Julie (Feb 8, 2007)

mintchip said:


> Has anyone read the Bill Cosby kids book (I think it is called "The Meanest Thing to Say)Sorry I can't remember the exact title but it is great.


I haven't read that---but I will check the library for it.Sounds like a good book!I live across from the library!


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## Julie (Feb 8, 2007)

Judy A said:


> We have a theraputic(sp?) horseback riding facility in our community. I would strongly suggest you all look into that in your areas. I volunteer at ours and the success I've seen with the kids is priceless. If you've never heard of this, google it and do some research. It's really a great program.
> 
> Again, I commend all of you. As a teacher, it's good to be reminded what it's like at home to keep things in perspective.
> 
> ...


This is something I heard about and wanted to do with Robbie.I think the spread of his legs over a horse and the warmth would benefit his hips and legs.I hit a wall with location and expense and then put it on a back burner.I had kinda forgot about it....


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## Julie (Feb 8, 2007)

havashadow said:


> Wanted you all to know I just started a group called Caring for "Very Special" Kids. Hope you'll come join me! :biggrin1:


How do I join Leslie?


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## Leslie (Feb 28, 2007)

Julie,

Go to the forum home page, click on "Groups" (it's to the right side) You'll see a list of the newest groups, click on "Caring..." I think it will give you the option to join. Since I started the group, I'm not exactly sure if this is correct. 

Mintchip or Havanesebyha, can you help?


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## Judy A (Jan 13, 2007)

Julie, or anyone else, if you want to see our local web page and watch the 2007 video slide show, here is the address: rainbowridershome.org It's pretty heart warming to see all the smiles on the kids faces!!


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## Julie (Feb 8, 2007)

I'll check that out Judy!
Leslie--I joined!I did it!I have a question for you..Does everyone read that "in the groups" like they do on the forum?Is it more private to just group members?There are a few things I'd like to ask---but to you guys,not everyone on the forum.??


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## Leslie (Feb 28, 2007)

Julie,

I believe that anyone who specifically goes to our group can read what we talk about in our threads. However, they have to actually go "through the hoops" (click on "groups", click on "... special kids...", click on the specific thread) to get to it. It is not as "out there" as this is.


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## Leslie (Feb 28, 2007)

Judy,

That's awesome! Does it get any better than special kids and animals??? I don't think so!


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## Judy A (Jan 13, 2007)

Thanks, Leslie...it is awesome for sure, and no, it doesn't get any better than that! Most of my friends are not animal lovers, so this is my outlet for that. They sometimes give me a hard time for my devotion to my dogs, ie. having to go home so they aren't alone too much, etc. I know you guys understand that, so it's nice to have cyber friends who you can relate to!! I think they also wonder why I don't go golfing instead of volunteering at Rainbow Riders....there loss! I have wonderful friends...we just have different interests sometimes!


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