There are special needs trusts that certain attorneys specialize in. We had one for my sister, who had Down Syndrome.

She was the light of our life. God bless all of you who are living with a special child. God knows you are the perfect family for him or her.

I agree, having my boy around his brothers has done so much for his social skills.

I haven't read that book, but it sounds very interesting. I'm sure there is something like a social tutor out there. A couple of the special needs kids at my kids elementary school have personal instructional aids. There has to be something like this for adults too, you'd think.

Originally Posted by lulilu

There are special needs trusts that certain attorneys specialize in. We had one for my sister, who had Down Syndrome. She was the light of our life. God bless all of you who are living with a special child. God knows you are the perfect family for him or her.

She sounds like she was so special. I remember you talking about her before. It is hard for most people w/o a "special" someone in their lives to understand how amazing and humbling it is to have them with you. I sending you a hug too.

I used to work at the New Mexico Center for Self Advocacy and there were a lot of people like your brother involved. Each state is required to have a developmental disabilities planning council; the Center is under that council. The programs at the Center (and I'm sure, centers in other states) are much more suitable an environment because of the huge spectrum of ability and disability present. You should look into things like that in your area! I've met a lot of people enrolled in college because it's the alternative to the couch. And when that is the reason for attending, it's a waste of time. Good luck finding more appropriate programs! Make sure they have an emphasis on self advocacy and self determination.

Originally Posted by nooch

I used to work at the New Mexico Center for Self Advocacy and there were a lot of people like your brother involved. Each state is required to have a developmental disabilities planning council; the Center is under that council. The programs at the Center (and I'm sure, centers in other states) are much more suitable an environment because of the huge spectrum of ability and disability present. You should look into things like that in your area! I've met a lot of people enrolled in college because it's the alternative to the couch. And when that is the reason for attending, it's a waste of time. Good luck finding more appropriate programs! Make sure they have an emphasis on self advocacy and self determination.

thank you and everyone else so much for the advice! Will look into it. I think they are the same people who are sponsoring the summer camp he is attending...maybe they have a sort of day program too. This is all so confusing once they leave the school system!! It was so much easier back in HS!

Yup, one of the things I did when I worked there was teach classes on what happens after high school and the idea that there aren't IEP meetings and people holding your hand and guiding you through it all unless you really seek that help out is always a hard sell with the kids. It's hard enough to get typically developing high school kids to grasp the idea that the planning is on them. With kids who have DDs it's often a blunt force trauma because the transition is so abrupt.

Hi everyone

I'm so happy for this thread and I take my hats for the mothers that has children with a disability. My son is 8 years old and he currently has a learning disability. My attends a public school where he is in ICT class ( half special Ed and half general Ed), also receives speech therapy, resource room and occupational therapy. Since my son was 2, his doctor realized he wasn't on the level that he suppose to be. I was very depressed because I didn't want my son to have a learning disability that I had when I 7 years old. My son has ADD, it's very hard for him to stay focus and concentrate academically. He does not have a behavioral issue just trying to get to him to focus is very challenging. I receive a lot from his School and my mother which is a special Ed teacher.

Originally Posted by rookie bag

Hi everyone I'm so happy for this thread and I take my hats for the mothers that has children with a disability. My son is 8 years old and he currently has a learning disability. My attends a public school where he is in ICT class ( half special Ed and half general Ed), also receives speech therapy, resource room and occupational therapy. Since my son was 2, his doctor realized he wasn't on the level that he suppose to be. I was very depressed because I didn't want my son to have a learning disability that I had when I 7 years old. My son has ADD, it's very hard for him to stay focus and concentrate academically. He does not have a behavioral issue just trying to get to him to focus is very challenging. I receive a lot from his School and my mother which is a special Ed teacher.

Welcome to our thread! Your son sounds amazing! I'm happy he gets special and general eduction. What a blessing that your mom is a special Ed teacher too. Hugs to you and to him. If you watch the olympics tonight remember that Michael Phelps is ADD too.

Originally Posted by mammabyrdie

Welcome to our thread! Your son sounds amazing! I'm happy he gets special and general eduction. What a blessing that your mom is a special Ed teacher too. Hugs to you and to him. If you watch the olympics tonight remember that Michael Phelps is ADD too.

Thanks a lot, Im so happy that other parents could relate to me. I"ll be dropping by this thread frequently.

Just checking in with everyone - my son has been having a rough patch. He's having more seizures and seems unhappy/uncomfortable about 50% of the time. I am hoping it is just a "growth spurt" or readjusting to school starting. He's in a new school this year with a wonderful teacher, very small (6 kids!) class - I am so happy about that. Just wish his health would improve a bit!!

How are all you other Special Needs parents doing??

Originally Posted by rookie bag

Thanks a lot, Im so happy that other parents could relate to me. I"ll be dropping by this thread frequently.

I am a little late, but welcome rookie bag!

Originally Posted by melovepurse

Just checking in with everyone - my son has been having a rough patch. He's having more seizures and seems unhappy/uncomfortable about 50% of the time. I am hoping it is just a "growth spurt" or readjusting to school starting. He's in a new school this year with a wonderful teacher, very small (6 kids!) class - I am so happy about that. Just wish his health would improve a bit!! How are all you other Special Needs parents doing??

Hi melovepurse. Sorry to hear that your son is having a such tough spell. My heart goes out to you and him as I've seen first hand that seizures are no joke. Sending some hugs and good wishes your way that your son may feel a bit better soon!
My little sweetie and I are going through a difficult adjustment period right now. We moved last month from NY to PA and are now having difficulties getting him into school. He graduated from his pre-school in NY, but because he was not 5 on Sept. 1st, he has to do another year of pre-school here in PA and cannot start until he's been evaluated again. I think he misses the structure and routine of riding the bus and going to school to see his friends. As we just moved, he has no friends and spends most of his time playing in the backyard (which is great as he never had a yard before), doing solitary activities or hanging with me.

He's regressing in toileting and self care and just seems so bored. I try to keep him engaged with educational games and activities, but I work from home so I can't dedicate as much time as he deserves and as I would like. It is stressing me out and I know he picks up on that. The good thing is his evaluation is next week. Fingers crossed that he will be in school by the end of September so that he can return to that happy, somewhat confident kid that I had before the move and I can stop feeling guilty!

mammabyrdie-you look glorious!

Originally Posted by mammabyrdie

Welcome to our thread! Your son sounds amazing! I'm happy he gets special and general eduction. What a blessing that your mom is a special Ed teacher too. Hugs to you and to him. If you watch the olympics tonight remember that Michael Phelps is ADD too.

mammabyrdie, I'd like to chime in as the aunt of a young man with Asperger's syndrome. He is now in his early thirties.

When he was small, the diagnosis "Asperger's" didn't officially exist. He is one of six children from a family where Dad was a university prof and Mom a linguist.

He read by age three, played chess by age four. Mom and Dad said, smart kid, but nothing worth writing home about. The fact that he didn't like to be cuddled or interacted much really didn't register, with all the other children in the household.

It became alarming when Kweku started kindergarten. He became mute. His mom stood by the gate and watched him as he sat alone on the grass, refusing to interact with the other children. She said it damn near broke her heart to watch him there, so alone. He was going to be tested, to see if he was "retarded".

Finally, after years of asking "What's the matter with our child?" there was a diagnosis. Asperger's. There was creativity in that child's mind beyond belief, but at the same time an inability to do everyday tasks. I remember him at age nine, not being able to tie his shoelaces, but inventing stories with a vocabulary so far beyond his years. He ran hot or cold, either tearing through the house from basement to attic, up and down, up and down, or else slumped motionlessly in a corner with a book.

Once he made it through puberty, which was a very difficult stretch of time, it was as if someone had flipped a switch. He isn't Mr. Popularity by any means, he still has problems "reading" others and interacting comfortably face to face. But - he has carved a niche for himself, works in IT from his own tiny apartment where he can keep interactions with others to a level that is comfortable for him.

All I'm trying to say, moms and dads of special needs children... here is my deepest respect for all the love and caring and courage, the many late nights, the everyday worries, often the fear for the very life of your child, worries about your child's future - that many of us "other" parents will never know.

Bless you.

Thanks lisanmoose for your kind words - he seems better today!

Glad to hear that your son's evaluation is next week - it's so much better to be in school with other kids and with the structure, you will both be happier then! That's a big move too! Best wishes to you!!

Originally Posted by lisanmoose

I am a little late, but welcome rookie bag! Hi melovepurse. Sorry to hear that your son is having a such tough spell. My heart goes out to you and him as I've seen first hand that seizures are no joke. Sending some hugs and good wishes your way that your son may feel a bit better soon! My little sweetie and I are going through a difficult adjustment period right now. We moved last month from NY to PA and are now having difficulties getting him into school. He graduated from his pre-school in NY, but because he was not 5 on Sept. 1st, he has to do another year of pre-school here in PA and cannot start until he's been evaluated again. I think he misses the structure and routine of riding the bus and going to school to see his friends. As we just moved, he has no friends and spends most of his time playing in the backyard (which is great as he never had a yard before), doing solitary activities or hanging with me. He's regressing in toileting and self care and just seems so bored. I try to keep him engaged with educational games and activities, but I work from home so I can't dedicate as much time as he deserves and as I would like. It is stressing me out and I know he picks up on that. The good thing is his evaluation is next week. Fingers crossed that he will be in school by the end of September so that he can return to that happy, somewhat confident kid that I had before the move and I can stop feeling guilty! mammabyrdie-you look glorious!

Hello Everyone! I hope all is well with you all. Melovepurse, I hope your son is doing better!

I took LoverButter to his first assessment for pre-school. He'll be 3 in November and will be going to continue his intervention there. I cry everytime I think about it. How am I going to deal with him being gone for 2 1/2 hours a day? I am happy he will get therapy he needs and I know he will love it. My baby is growing up so fast! I'm freaking out, but I don't let on that I am. Good thing I agreed to be the PTA president at the school. Sorry all, I am cutting those apron strings slowly.

I hope it's OK for me to post in here as I'm feeling quite at a loss right now.

DS has been receiving ABA services since the beginning of this year, at my insistance to get him checked for developmental delays. He turned 3 this past Monday and so we have been going through transferring our case to the school district. He tested (not officially, since he can't be diagnosed by the school district) for being mild to moderately autistic and my husband is running scared. He does not want to believe that DS has a delay. He is convinced DS is not autistic. And he definitely does not want the school district to provide services to DS because of his own personal experience.

I've gotten him to admit that he thinks that DS could use some help, but he wants to go back to the group that was providing our ABA services. As of the end of this month, our insurance will cover ABA services (we were receiving services for free through the state), but only if we get him officially diagnosed. DH doesn't want to go through that either.

I'm also feeling a lot of strain because our caseworker at the school district is pressuring me to sign his IEP, simply (at least, I believe) because she's subbing and will be leaving on the 16th (my 2nd IEP meeting is on the 15th). I felt their evaluation wasn't exactly accurate (and our ABA team believed the same). On the other hand, we also are part of a school district who has some of the lowest scores in the state (at least that's what DH says), but because of it, we are also more richly funded and the program they're proposing is quite intensive for him. One of my coworkers who is in the same school district, with the same schedule had nothing but positive results for her son.

I'm under such stress right now. I want to do what's best for DS, but how can I convince DH otherwise to go one way or the other?

DS is currently in a great preschool, if we went with the school district, we would have to change his schedule completely around to accomidate his classes.

I'd love to continue with our ABA group, but, I think we're both scared of officially diagnosing DS.

Thanks for hearing me out :)