Families with Special Needs Children...

[luckiestgirl]

Sorry...closed for lack of interest....

[southerner]

It's wild that you started this thread. On LJ a few days ago, a couple of us were having a discussion about Asperger's Syndrome and I was thinking (even said it to someone) that I should start a support thread. I don't have any children with special needs, but I have siblings that do and work in the field. I'd love to be involved in this thread.

luckiestgirl, Has your 5 year old been diagnosed with SID yet? I don't hear people use that exclusively (w/o being on the PDD spectrum) very often.

[southerner]

southerner~ My daughter was VERBALLY diagnosed as SID but noone put it in writing so I am unable to get help through the school (like IEPs, therapy in school, special ed, etc.) With the new doctor we got for her FOD disorder, she really wants me to get a handle on the SID & get a diagnsis & get more help in my community

diagnosed by who?

IA with the new doctor in bold.

Prevasive Developmental Disorders is in the Autism spectrum (well, same thing really). Didn't know if that's been discussed with you or not, but like I said, I've only heard the two used together. There's lots of info out there. I'll post some links, if you're interested.

[southerner]

have you found this webiste yet?

http://www.autism-pdd.net/

There's tons of great info on there. Let me know if you need more specific info, research, etc.

OT's generally know what they're talking about :)

[JLRenheos]

How would you go about testing for Autism, if you suspect it?

My husband's oldest brother & his wife have an Autistc son(he's the 2nd child of 3 - middle child). They did decide to go for their 3rd and last child & he seems perfectly normal, but does have a speech delay.
My nephew(middle child) was originally misdiagnosed. They thought something was wrong because he wasn't succeeding/progressing in other areas, nor was he talking. He was 2 1/2 yrs. old when he was diagnosed with being Autistic. He also has sensory problems too.
He has therapy sessions 6 days a week with his therapists & also goes to school with one of his therapist. I know that he stims A LOT. He'll be 8 at the end of July. My Sil & Bil fork out a ton of money for his therapy. It's insane.
She's a huge advocate for Autism & was just at the rally for it in Columbus, Oh. She recieved a certificate/reward by the Mayor & she got to share her story with many others about her live w/a special needs child.

[mia's mama]

My DD does not have special needs, but I am a Pediatric Occupational Therapist (You too, Southerner?)...happy to help answer any questions for those that have them!

[southerner]

JLRenheos, who gave an autistic diagnosis at age 2???? :eek: :eek: They are entitled to some funding, don't know why they're paying insane amounts for his therapies.

mia's mama, nope, I do a lot of behavioral consultation and family advocacy for the special needs/mental health population.

luckiestgirl, As for not getting services in one town and getting them in the next town. There could be several reasons for this. One could be the person who actually does the testing. Maybe the first one didn't see/hear about enough of the characteristics to give an autistic diagnosis. Also, this diagnosis isn't supposed to be given to anyone under the age of 5 anyway. Also, each town has different amounts and sources of funding available. I'm not sure which/if any that's the case here.

[JLRenheos]

southerner the children's hosp. can provide them their ABA therapists, but they have chosen to interview their own therapists & provide on their own. They have gotten some funding through their Catholic church/school, since their son was the first person that they have had any experience with(as far as with Autism). The school provided 1-2 yrs. of partial pay tuition. He is now attending public school system & goes to school with his therapist/s. They also moved from Westerville to another city within Columbus, Oh. to a more prominent area & that has a better school system. I don't know who initially diagnosed him at age 2, but there was something way more wrong than what they were led to believe.

As far as my nephew, I have seen very small improvements out of him. His stimming just gets simply out of control sometimes. That's what his trampoline is for. He now goes to the restroom by himself. He can fall asleep by himself, but cannot sleep without having someone right near him. He used to hate the shower & was extremely afraid of it (the shower head).

When their house was being built & they lived in an apartment, he escaped & ran out into one of those foutain things nearby. He could've drowned. My SIL had to install those magnetic alarm things on the windows & doors, and even in their new house along with their reg. house alarm. His younger brother is catching up with him in age, although he's 3 1/2 yrs. old.
I give a TON of credit to my SIL. She does it a ALL. I seriously, don't know how she does it. I'm sure she's stressed out beyond belief. Thanks goodness for an extremely supportive family & friends - and to people who understand their situation.

[MomToAp1699]

I hope I am doing this right, I am new to this site all together a friend sent it to me. I am the parent of a child with An Autism Spectrum Disorder called Asperger's Syndrome. He was dianosed in September prior to that we had been working with the Diagnosis of ADHD and ODD but at an evaluation it was changed and is incredibly obvious that this is the right diagnosis for him.

[southerner]

MomToAp1699, First of all, welcome to CC. I have a brother with AS and as I said in a previous post, I have a lot of experience in the field. How old is your son? What kinds of sevrices are you getting? Where do you live? What kinds of treatment interventions are y'all doing?

[MomToAp1699]

Where do you live? What kinds of treatment interventions are y'all doing?[/QUOTE]


Hi, My son is 7 years old. He recieves Currently Behavioral Therapy, Occupational Therapy and Speech Therapy. During the Summer he will have a TSS ( Theraputic Support Staff) who will attend day camp and other such kids activities with him to help on his ability to function in those sorts of things. He may be going to a social skills group as well during the summer but thus far I am unimpressed with the things I have heard about it so I may be looking other routes for that type of therapy. We are from Central Pa. Right now our Treatment comes from a Therapy Support Agency in town who reevaluates every 3 months and does a wonderful job working with us for programs and plans and aides etc to help him going his BS would go to the moon to help him .. I am currently in the process of trying to get an IEP back in place for him at School . He had previously had one but it was purged when he went from PReschool to Kindergarten as they decided he no longer had the need for one @@ It happens.. now I Have to fight.. We also Are applying for SSI as the cost of keeping his life organized ( he must have containers and labels foreverything ) is staggering as is the cost of trasportation and activities where he can learn in a social situation.

[amyloo]

Hi Ladies! I don't have any children, but I'm an elementary music teacher and I am considering going back to school for music therapy. I'm hoping I can join your thread!

This is the first year that I've had spec. needs students streamed into my classroom, and I also teach a 3 yr spec. needs music class. I have learned so much from them this year- I think they are the teachers! :)

[MomToAp1699]

<<<luckiestgirl<<<

Sorry to hear the school is not working with you to get the IEP, its sad that it happens. Unfortunatly its a frequent issue alot of parents have to deal with. I am waiting but not so patiently, I only sent back the forms needed right before Christmas and the wait after that is like 60 SCHOOL days.. rather than just calender days.. Lovely Specially with the holidays in there they don't HAVE to get back to me until like the end of March.. As far as the SSI goes I had been suggested the idea before of applying and had shrugged it off as not needed at the moment but time changes and it was something we felt needed to be done at this point. Hopefully I will hear from them soon cause there are some things I need to get and sign up for that I am just struggling to cover at this point.

I have my fingers crossed big time for you all your appts go well I know how hard it is having to go to all these diffrent things..

[southerner]

luckiestgirl, First of all, hugs to you. I know what you're going through. I hear the same thing all the time. I'm going to encourage you to pick your battles with your son. You aren't possibly going to get him to do everything you have asked of him, so I'd try to get the most important things done. When he's doing homework, is he allowed to take small breaks? If he is ADHD (sounds like a lot of defiance more than inattention to me), then he can't sit and do it all at once. Let him earn a break and user a timer if you have to, so he'll know when he has to come back and work some more. The timer will allow him to see how much time he has left and he'll be prepared for the transition back to homework. What's on this list you mentioned? If he refuses to use it, ask him what he can think of or what he's willing to do. Allow him to be involved in the decision regarding his car. How are his communication skills? Also, bear in mind that he needs you to be consistent. You'll only have to "stand your ground" a few times for him to realize that he can't get away with certain things. He's pushing your buttons and my guess is that he knows which of your buttons are the "hot" ones.

MomToAp1699, Please Please Please stay on them to give you SSI. You'll get approved for it, but remember squeaky wheel gets the grease.

[southerner]

luckiestgirl, maybe you could try pictures instead of lists? Also, maybe you can allow him to make the list? Maybe there needs to be some "fun" things on it that he likes and not all "work" things? Maybe he'd like to decorate it himself? Maybe you can call it Cody's bulletin board or agenda? I'm pulling ideas out of my butt here. I'm thinking if the lists were more his own (not something Mom makes me do), then they'd appeal to him and he'd take to the intervention better.

How long does homework typically take him? 1/2 hour increments sound too long time to me, but if he has 3-4 hours of homework, then they have to be that long to get it done. Also, his breaks could be shorter than the work periods. It sounds like this is a system you've started in your home already, so don't just go change it on him. I forget, do you have in home services? What resources do you, as a parent, use?

One more question (sorry, so many)....what meds is Cody on? How long has he been on medication and what others has he been on in the past?

Mind if I make a suggestion? Can you post some basic info about the members of this thread and their "story" in the first post? I forget who is who and how old their child is. I've had to reread the thread to remember people's children several times now :o Here's something to play with.

Member name:
Children and their ages:
What services you receive:
Home Environment:
School Environment:
Parental concerns:

eta: luckiest girl, If you don't come back before your appointment, good luck! I know how monumentous this day is for a parent of a child w/ special needs :)

[southerner]

bump....

Wondering how life with your special ones is for y'all. Would love to hear some updates and see if there are any newcomers out there.

There was talk of some PDD spectrum disorders around CC lately.

[WisWis]

I wanted to unlurk for a moment, hopefully that's okay. I'm a teacher and have found it very helpful to read through this thread about everyone's experiences.

Updates: we had a meeting at the middle school & my ADHD son got accepted for an IEP but I was very disappointed. They had several names down for people that were suppose to be in the meeting & only 4 (besides my family) showed up. 2 stayed the whole time, 1 left midway, & the principle came in about in the middle, made noise for about 15 min then left. So I can see this school really takes seriously the fact that they want to help kids! :mad:
In regards to this, please don't think that the school doesn't care just because not everyone came to the IEP meeting. It's very difficult to get to them for even part of the meeting, let alone for the whole thing - they can go on for quite a while! My previous school usually scheduled them before or after school making it easier to attend, but if they're during the day, like at my current school, I rarely go to them. If I were to go to every IEP meeting for all of my students I'd hardly be in class! I always make sure to talk to their case manager both before and after the meeting, giving them my observations and thoughts. Your child's teacher(s) may do the same thing.

[polkadot]

I am Lauren. Just wanted to say Hi! I dont have any children but I am a Special education teacher for birth -5 year old. I have my degree in Birth to Five Early Interventionist Education. I have been reading most of your stories and I find them all incredible. Ihope you all dont mind if I tag along and read up and see what different parents and teachers have to say. I taught the birth to 6 special education class last school year and this upcomign year I will be moving with some of my students to the Kindergarten inclusion classroom as the head teacher. I am very excited about it... I am also going to look into the Anxiety Disorder NOS with selective mutism. I think i may have figured out what is going on with one of my students. :D

[polkadot]

thanks...i will be here often...:)