Special Needs Kids

[partytimesausage 27]

Anybody have any good contacts for special need advocates for katy isd?  I need to know what I need to be pushing for. 

 

Thanks

[Goofyboy 3269]

Where are you located?


I hired Cynthia Singleton. I’m in Fort Bend ISD. I think she’s in Houston. She is VERY detailed. She is also very firm, but polite. My first ARD with her was 3 hours. She really knows the laws and rules.


https://advocate-well.thinkific.com

[Ojo Rojo 1954]

Another update since it's been a while and others might benefit from our experience.

We ended up enrolling our son in a private school for kids with behavioral problems.  When we went to tour it the situation was a bit jarring.  We could hear a kid raging out in a special room they have for such episodes; a couple of kids came up to us and just started talking to us about random stuff.  They were nice, but it was socially awkward.  That said, the administrator was great and when we toured the school our son really seemed at ease and liked it. At the end, uncharacteristically, he gave the administrator who gave us the tour a hug.  His reaction to the school, our perception of it, their resources and professionalism and approach, plus our own research and conversations with other parents who either had their kids there or knew someone who did all led to us enrolling him.  He started a few weeks into the fall semester last year.  They told us that the first month or so was going to be tough, but that he would eventually get more comfortable.  That is exactly what happened.  He would do the same things he'd done before - cuss, scream, try to run out of the classroom, hit people - but the teachers were trained for this type of thing and all of the kids there were like that so they had a ton of experience dealing with it.  They had basically perfected methods to address his exact types of behaviors.  So even though at first his behavior wasn't better, the school was able and willing to deal with it and we didn't get calls or have to go pick him up or sit with him.  It was a huge relief for my wife and me.  The downside?  Tuition is $40K/year.  We made the decision that he would go to that school no matter what because it was so clearly what he needed.  Our son even told us later that his life changed (for the better) when he started at the new school.  Hearing that made all of the sacrifice worth it.

Fast forward.  We got a recommendation from our pediatrician to take him to a pediatric neurologist.  We did and they ordered some additional testing.  The result?  High-functioning autism.  My wife cried when we got that diagnosis.  I was surprised she did.  After everything I had learned, I was expecting it and wasn't surprised or upset by it at all.  If anything, I was relieved to get an even clearer picture of what my son has and how to deal with it.  We've also changed his meds because the Abilify made him gain a lot of weight.  So he's on low dosages of Lexapro and Vyvanse.  His behavior overall is better, but he still has many, many episodes.  He still melts down and cries and screams when things don't go a certain way.  He still does socially unacceptable shit; mainly cussing.  During the spring semester at the private school he showed strong progress, both behaviorally and academically.  He was able to do more academic work and progress because he was trained by the teachers how to cope when he got frustrated.  He's still behind, but he's made a lot of progress.  He can read, but it's probably not at grade level.

Because of the cost of the school we had to sell our house and move to a smaller, less expensive house.  I resisted that as long as we could, but ultimately it was the decision we had to make.  It was still hard for me, but now that we've actually moved it's really not so bad.  I've actually kind of enjoyed the change of scenery. Over time the lack of financial stress will also probably prove that the decision was totally worth it.

I guess the takeaway I would have for anyone starting to deal with this is that it has taken us A LONG time to get to a place, with a diagnosis and medication and the right school, where we can actually live our lives without total anxiety and misery.  It's been like five years or so since all of this started.

[Bevo&Pevo 5121]

^^ Tough times don't last, but tough people do.  You guys hang in there.  

[YGIFS 19449]

Can't make any promises, by wife works with kids all along the spectrum every day.  She can't ever say it to the parents, but She has noticed in 25 years of practice (Private & Public & Clinical), that parents accept it, make the necessary changes, get into new environs/routing, and have even the faintest hint of less anxiety and frustration.........most of the kids pick up on that and it offers some modicum of solemnity.  So your journey was never in vain, challenging as it was and will continue to be.  Blessings and best wishes to you and your crew.  Onward through the fog...

[Mo Horn 8831]

Ojo, I work in the KC area for an entity that provides case management to individuals with ID/DD, many of which are on the spectrum. Without a doubt, parents like you guys are the absolute best to work with. You care about your child and sacrifice tons to provide what is needed. Sadly, many times parents don't give a shit and kids end up homeless, in jail, or even dead. We are ecstatic when we have parents like y'all. I worked in the field in Texas, but that's been many, many years ago so I'm not totally familiar with the system there anymore. But, I do know that every county has an entity that does what we do. When kids are younger and in school there are some things we can do to help, but it's really essential to have a case manager when they get out of school. There are a wide range of services we can help with, from in home support, to day programs, to residential programs, and the entities in Texas can do the same thing. If you haven't already connected with them, I encourage you to do that. Start building a relationship. It will pay dividends in the long run. I'm happy to research whatever is available in your county, if you'd like, although you might be way ahead of me and already have a case manager. I'm happy to answer any questions about services and such. I'm also happy to just be a sounding board, as someone who works with this every day, if you need. Hang in there, you are doing a great job. 

[Ojo Rojo 1954]

1 hour ago, Mo Horn said:

Ojo, I work in the KC area for an entity that provides case management to individuals with ID/DD, many of which are on the spectrum. Without a doubt, parents like you guys are the absolute best to work with. You care about your child and sacrifice tons to provide what is needed. Sadly, many times parents don't give a shit and kids end up homeless, in jail, or even dead. We are ecstatic when we have parents like y'all. I worked in the field in Texas, but that's been many, many years ago so I'm not totally familiar with the system there anymore. But, I do know that every county has an entity that does what we do. When kids are younger and in school there are some things we can do to help, but it's really essential to have a case manager when they get out of school. There are a wide range of services we can help with, from in home support, to day programs, to residential programs, and the entities in Texas can do the same thing. If you haven't already connected with them, I encourage you to do that. Start building a relationship. It will pay dividends in the long run. I'm happy to research whatever is available in your county, if you'd like, although you might be way ahead of me and already have a case manager. I'm happy to answer any questions about services and such. I'm also happy to just be a sounding board, as someone who works with this every day, if you need. Hang in there, you are doing a great job. 

Thanks.  Really appreciate the insight and offers for help.  I actually didn't know about the county-provided resource.  Is it for people over 18 who still need services?

[Mo Horn 8831]

14 minutes ago, Ojo Rojo said:

Thanks.  Really appreciate the insight and offers for help.  I actually didn't know about the county-provided resource.  Is it for people over 18 who still need services?

It's for anyone with an ID/DD diagnosis, which includes those with an autism diagnosis. It's a state program that is broken up by counties. Here is the website with all the information. Let me know if I can help more. 

https://www.hhs.texas.gov/services/disability/intellectual-or-developmental-disabilities-idd-long-term-care

[Rip76 4925]

On 8/6/2024 at 12:14 PM, Ojo Rojo said:

Another update since it's been a while and others might benefit from our experience.

We ended up enrolling our son in a private school for kids with behavioral problems.  When we went to tour it the situation was a bit jarring.  We could hear a kid raging out in a special room they have for such episodes; a couple of kids came up to us and just started talking to us about random stuff.  They were nice, but it was socially awkward.  That said, the administrator was great and when we toured the school our son really seemed at ease and liked it. At the end, uncharacteristically, he gave the administrator who gave us the tour a hug.  His reaction to the school, our perception of it, their resources and professionalism and approach, plus our own research and conversations with other parents who either had their kids there or knew someone who did all led to us enrolling him.  He started a few weeks into the fall semester last year.  They told us that the first month or so was going to be tough, but that he would eventually get more comfortable.  That is exactly what happened.  He would do the same things he'd done before - cuss, scream, try to run out of the classroom, hit people - but the teachers were trained for this type of thing and all of the kids there were like that so they had a ton of experience dealing with it.  They had basically perfected methods to address his exact types of behaviors.  So even though at first his behavior wasn't better, the school was able and willing to deal with it and we didn't get calls or have to go pick him up or sit with him.  It was a huge relief for my wife and me.  The downside?  Tuition is $40K/year.  We made the decision that he would go to that school no matter what because it was so clearly what he needed.  Our son even told us later that his life changed (for the better) when he started at the new school.  Hearing that made all of the sacrifice worth it.

Fast forward.  We got a recommendation from our pediatrician to take him to a pediatric neurologist.  We did and they ordered some additional testing.  The result?  High-functioning autism.  My wife cried when we got that diagnosis.  I was surprised she did.  After everything I had learned, I was expecting it and wasn't surprised or upset by it at all.  If anything, I was relieved to get an even clearer picture of what my son has and how to deal with it.  We've also changed his meds because the Abilify made him gain a lot of weight.  So he's on low dosages of Lexapro and Vyvanse.  His behavior overall is better, but he still has many, many episodes.  He still melts down and cries and screams when things don't go a certain way.  He still does socially unacceptable shit; mainly cussing.  During the spring semester at the private school he showed strong progress, both behaviorally and academically.  He was able to do more academic work and progress because he was trained by the teachers how to cope when he got frustrated.  He's still behind, but he's made a lot of progress.  He can read, but it's probably not at grade level.

Because of the cost of the school we had to sell our house and move to a smaller, less expensive house.  I resisted that as long as we could, but ultimately it was the decision we had to make.  It was still hard for me, but now that we've actually moved it's really not so bad.  I've actually kind of enjoyed the change of scenery. Over time the lack of financial stress will also probably prove that the decision was totally worth it.

I guess the takeaway I would have for anyone starting to deal with this is that it has taken us A LONG time to get to a place, with a diagnosis and medication and the right school, where we can actually live our lives without total anxiety and misery.  It's been like five years or so since all of this started.

My apologies if I didn't see it, but how old is your son?

[Ojo Rojo 1954]

22 hours ago, Rip76 said:

My apologies if I didn't see it, but how old is your son?

He is 8.

[Goofyboy 3269]

He is 8.

Hopefully as he gets older, he will be able to regulate better. My son is 13 now and his melt downs are almost non existent. I don’t know if they have the same diagnosis or not, as we never had to get my son tested. He’s been home with me and it’s been years of work and patience.

[Armybrat 40822]

It is certainly a difficult road for all involved, but today we are blessed to have resources to help the kids towards a more productive path. 
My oldest grandson (a CP kid) had physical & behavioral issues that were challenging even for the professional providers 25-30 years ago. The medical doctors were able to correct most of his physical problems prior to the time he entered middle school, but the psychologists had a tougher time with mixed results. 
Surprisingly, Mrs. Brat had the most success in helping him modify his behavior and instilling him with self confidence. 
I still miss him terribly every day.