Parents of Special Needs kids thread

[Claudia1]

My DD was Sp Ed all thru school and I would have loved to have had the opportunity to send her to a private school that would have meet her needs. Her disabilities were/are quite varied and the public school did not have the resources or programs to fully meet her needs. In her high school years, she took distance classes from Indiana University High School and her diploma came from them. Her local high school credits transferred but her needs were best meet outside of their curriculum. The skills that she learned in public school were more of survival in school, not survival in life. Sp Ed students have lots more to deal with in school than academics. She will always struggle in life because our interventions were not adequate to fill in the voids in the public school system and there are no appropriate schools for her less than 500 miles away. We did the best that we could do.

Ideally, school systems would have the trained staff, funds, and programs available to meet the needs of every Sp Ed student. However, with all of the unfunded mandates and tight school budgets, most corporations have a cookie-cutter approach to most Sp Ed students and a parent/advocate may be the only life-line that your child has. If a private school can teach a Sp Ed student the academics and social skills to thrive (not just survive) in life, then that is progressive, IMHO, not sending it back to the 50's.

 

[PrincessPatty]

First of all, welcome to the world of Special Ed. You are going to see as you go through your work experiences how the opinions on how to treat Autism and what works best is as varied and diverse as those affected by it. Some of my best advocacy came from professionals such as yourself who had some time in this field and could advise me on the various drawbacks and strengths of different programs. As a parent of a child who has Autism, I can agree with you that the one on one attention and special curriculum is beneficial to a point. My son has had it both ways - mainstreaming and a pull-out program. Both have been beneficial to him in different areas. The pull out helped him to make strides in academics. The mainstreaming has helped his communication and social skills. One of the most critical areas for a child with Autism is learning Social Skills. Studies have found that some of the most beneficial aspects of treatment is through social interaction where Autistic kids learn social skills by observing behavior modeled by their typically developing peers - Circle of Friends, Lunch Buddies and those types of programs. Unfortunately in a segregated, private school setting, the autistic child can not gain that type of social interaction. My son has made significant progress because of compassionate peers at school and in Boy Scouts who help mentor him and model behavior. The peer mentors gain excellent leadership skills that will serve them throughout their life.

Thanks for the response, and I totally agree with the social aspect of it all. We have social development in our school, but its pretty tough to get the kids to interact with one another.

 

[barkley]

the social services agency i worked for tried a unique concept several years back. 3 of the elementary schools provided office space for a social case worker on site. any attending child who was involved in at least 3 aspects of the the social service or criminal justice system would be assigned that worker. so if a kid had a child welfare issue, a parent say on supervised probation and health services case they would have their case worker on site at their school (the parents had to agree to participate in the program). if there was an issue with the child the school would alert the case worker and she would gather all of the information from the court workers, the probation department...and bring those individuals in to discuss the issue. there was a wholistic approach to helping the child (the teachers were great "front line" observers of changes in behaviour on the kid's part which were often traced to medical problems or stressors at home). the parents LOVED it-instead of personaly trying to relay everyone's information to everyone else they felt they had an in-house advocate for their child who could cut through red tape and get the child's needs met. sadly some "community advocates" complained that they felt having a social services representative on site caused a social stigma (they reasoned it depicted the school as having social problems ).

i've always thought-how wonderful would it be to have one person who knew everything going on with a particular child and could facilitate an effective flow of information between all the interested parties. unfortunatly with special needs kids this person always ends up being the parent-and despite having much respect for professionals i think far too often we (parent advocates) are told "but you're not seeing this clearly-you have too much of an emotional stake in the matter". UH YEAH-but i don't see you offering up anyone else to speak on my child's behalf!

 

[nwdisgal]

Princess Patty - Is the socialization between two special needs kids, or typically developing and special needs? I think that is key. Here is a good article that I found on social skills and the various therapies:

www.iidc.indiana.edu/irca/SocialLeisure/socialskillstraining.html

 

[roseprincess]

I was inspired by the responses to a thread I posted earlier about my son and thought maybe it'd be nice to have a thread for parents of kids with special needs to vent and get ideas.

I'll go first. I'm the mother of a boy who's 6 1/2 and has had nearly every label known to man. They've ruled out everything, but can't pin anything down. He definitely has auditory processing difficulties, both expressive and receptive language delays and sensory issues along with fine motor difficulties. We've dumped tons of money into doctors trying to get an accurate diagnosis and the closest we've come so far is a specialist we saw in a neighboring state who diagnosed him with extremely large tonsils and adenoids.

They were so detrimental. I'm a sped teacher and I never saw it with him. I knew he had trouble, but never thought of tonsils. He could never close his mouth to breathe, couldn't speak clearly (due to the tonsils holding his tongue down) and couldn't hear correctly due to the adenoids being so huge. Also, the muscles and nerves around his mouth made it impossible for him to move his lips correctly because of his being a mouth breather for so long. His muscles & nerves were severely weakened. He couldn't pucker his lips or control his tongue except to stick it out.

He was 4 1/2 by the time he was diagnosed with this and I was told he'd be mixing in with other kids by the time he was 10. We were told to do private speech and occupational therapy (the tonsils & adenoids were so huge they caused a lack of oxygen to his fingers and his fingers became clubbed and lost feeling so fine motor tasks are difficult for him). We also did Fast ForWord and that was the most worthwhile thing we did. We saw the biggest gain with that program, but I worked him hard. I took him out of the private therapy last year because he wasn't making progress with it.

We have 3 1/2 years to go to get the 10 year mark when he'll be mixing in with other kids, but I have to say, I'm losing hope day by day. I don't think he'll make it. He is extremely hyper and has some strange behaviors that I know impede his ability to be like other kids. I'm wondering if the oxygen deprivation for 4 1/2 years affected his brain. His doctor said that if it did, it'll repair itself, but I don't know.

Anyone else feel like sharing or venting? They have support groups, but like my son, I don't fit into any of them. I've never seen a child like mine before. He's a mystery.

I actually know what Fast ForWord is! My dd is going to do the computer software program at school again this yr, starting this coming Wed, 1 hr /day for 10-12 weeks, according to what her speech therapist said at school.

As for my kids, I have twins.DD has a severe congenital heart defect(Truncus Arteriosis)and has a secondary diagnosis of DiGeorge syndrome-goes along with the heart stuff. She also has some dev.delays and sensory issues. DS is PDD-NOS. He is doing very well schoolwise. he is actually in the gifted program at school!
I definately have had my hands full for years! But, I have had so much good support from my public school dist. and my church. had my kids in EI, EC. They have been mainstreamed in a reg. classroom since kindergarten. Our SST(special service teacher) at our school has been wonderful. Have known her since K and my kids are in 3rd grade now. SST has been very supportive of dh and I and she facilitates our IEP meetings, conferences, etc.
Dd still gets speech, OT, and PT. Ds gets speech. the other "typical" kids in their classrooms are accepting of my kids in hte classroom settings. It is hard after school or on weekends to have playdates, etc, because the other girls in my dd's classroom have their own clique of friends, etc. It seems my kids feel like outsiders because they are "different" when it comes to after school activities. I have my ds in Cub Scouts and he loves it! DD is in Brownies and she loves it, but hte girls can be cliquish(sp) at times.
My kids have never been made fun of or bullied at school or afterschool. So I'm blessed with that.
The only problems dh andI have are dh's side of hte family, not accepting of our kids., which I posted on the other thread.
Oh, back to my school dist., we have a ton of special needs kids, some mainstreamed, some in an MN(multi needs) program, depending on the severity of the disability. In our school dist.the parents have a choice to mainstream their special needs child or put them in an MN or MI program.
We also have Greenspan's Floortime- autistic play therapy, and it;s free for the families! My ds had the floortime for about 3 yrs. during his EC days. It helped him tremendously! The floortime people have been so supportive of us in the past yrs.

Rosemarie

 

[tw1nsmom]

Hey! Tw1nsmom! It's so rare to meet someone else who actually knows what NLD is! My son (age 10 now) has NLD, too. (Do you ever go over to www.nldontheweb.org? I love that forum. I get my best info there.) Anyway, hang tight on the speech path. DS has been in speech since he was in 1st grade. He doesn't have any artic. problems, but the MAIN problem most NLD'ers have is in prosody and pragmatics. DS's speech path is his pragmatics goddess. She has taught him how to navigate social situations and maintain conversations. That's the area most in need for him. They work on virtually all the things you listed (facial expressions, tone of voice, slang / idioms, sarcasm), and he's made such progress. He's almost ready (dare I say it???) for MIDDLE SCHOOL next year.

I kind of hope the OP would dip in here, too, cause some of the things she said about her child made me think, "I wonder if anyone has ever bothered to check out NLD as a diagnosis?" So many of us who deal with it went through so many other possibilities first before finally a person who knew NLD dx'd and said, "You know, I think your child fits here." It's so frustrating.

Anyway. Hi! It's nice to know you're out there. Stop by the NLD board sometime.

Julie

It's nice to meet you too! I've done a lot of lurking on the NLD Forum, but only posted twice (nobody responded ).There's so much to learn. I'm going to the conference in San Francisco in a couple of weeks being put on by the NLDA. I'd be happy to share any information I pick up.

I too thought of NLD for the OP's son. There's such a wide range of behaviors/symptoms with NLD. I agree, it's frustrating. I feel like I'm getting an unofficial PhD when it comes to my son's needs. It can be overwhelming. Sometimes I wish I had someone who could take over (just for a little while) being his advocate/coordinator.

Dawn

 

[JulieWent]

Dawn,
Not to hijack the thread, but you said that you are training to become an advocate. I have often wondered how this is done. I am currently a regular ed teacher, but from time to time, I wonder if I might not enjoy using my special "insider's" knowledge of the system to benefit other parents in the way that it's benefitted me as I've navigated IEP's and various testing that I've encountered through the years. So many things that I "know" because I'm part of the system, other parents have pushed by them because they do not. It exasperates me. (Of course, I do my share of behind the scenes work to help, but I have to tread quietly.)

I laughed when you said that you feel like you have a PhD of sorts in NLD. When we go for three year re-evals, I'm able to speak "neuropsych" with the man who has been evaluating our son since the beginning now. And explaining sensory integration dysfunction at a parent-teacher meeting is always lots of fun. For next year, I'm going to create a one page document (affectionately titled "NLD in a Nutshell") to distribute to DS's teachers since he'll be going to a number of different teachers. That way I won't have to force them to sit through an hour long seminar.

Julie

 

[tw1nsmom]

Dawn,
Not to hijack the thread, but you said that you are training to become an advocate. I have often wondered how this is done. I am currently a regular ed teacher, but from time to time, I wonder if I might not enjoy using my special "insider's" knowledge of the system to benefit other parents in the way that it's benefitted me as I've navigated IEP's and various testing that I've encountered through the years. So many things that I "know" because I'm part of the system, other parents have pushed by them because they do not. It exasperates me. (Of course, I do my share of behind the scenes work to help, but I have to tread quietly.)

I laughed when you said that you feel like you have a PhD of sorts in NLD. When we go for three year re-evals, I'm able to speak "neuropsych" with the man who has been evaluating our son since the beginning now. And explaining sensory integration dysfunction at a parent-teacher meeting is always lots of fun. For next year, I'm going to create a one page document (affectionately titled "NLD in a Nutshell") to distribute to DS's teachers since he'll be going to a number of different teachers. That way I won't have to force them to sit through an hour long seminar.

Julie

I've had some wonderful teachers in DS's life who gave me info on the QT. I know the people you help truly appreciate it. I always do.

When it comes to advocacy training, in NY there are no guidelines about the type of training necessary to call oneself an advocate. I have no interest, at present, to get paid for my advocacy. I just want to help other parents in the same situation I was in. There's an organization called Parent to Parent, and they offered a four week course in the spring by invitation only. I had been communicating/working with the trainer and she felt that I had potential as an advocate. I learned so much. I've also gone to many local conferences and meetings about special education law. This, as well as the private research I've been doing has helped me enormously. I'd like to take a Wrightlaw class if I get a chance. They're doing one in Rochester in the Spring, so hopefully I'll be able to attend.

I would love it if there were a local college that offered courses in this. However, at least around here, it seems to be something you do piecemeal. I would also be interested in taking education law classes at a law school, but I don't think the local law school offers them.

 

[kdibattista]

You do realize that people have spent years and years trying to get their kids out of special private schools into the mainstream public school setting?
You just sent special eduction back to the '50's.

Actually, for my sister, "mainstreaming" was horrible. Although her situation may be a bit different. She attended a school for children with disabilities and the results were amazing. She was high functioning an able to hold a job a couple days a week. Because of funding cuts, she was forced into a "mainstreamed" school when she was 19 and it was horrible. It was basically a glorified daycare. She took a few steps back and was absolutely miserable.

I would much rather her be in a situation where she is comfortable and not worrying about other kids picking on her. I would choose private school over mainstreaming any day and I know my mom agrees.

 

[PrincessPatty]

Princess Patty - Is the socialization between two special needs kids, or typically developing and special needs? I think that is key. Here is a good article that I found on social skills and the various therapies:

www.iidc.indiana.edu/irca/SocialLeisure/socialskillstraining.html

Thank you so much for that article! I have to do a research paper on Autism or some sort of intervention that I 'could see' an Autistic child benefiting from (I was going to do the gluten/casin free (sp?) diet).

The socialization is between special needs kids. We are an Autistic school, so everyone there is somewhere on the spectrum. Sometimes I want to give my 2 cents there, but I am just an intern without her degree yet (graduating in August though!) and Im not sure if my ideas would be taken seriously...