LastPommerFan Posted January 3, 2014 Report Share Posted January 3, 2014 My middle child, Ollie, has recently been assessed as Autistic. We haven't been up to Strong for the official full medical diagnosis, apparently this takes months, but we've recently been approved by the County for 4 extended sessions of in-home therapy per week. Ollie is 2 years, 4 months, and was identified by the Early Intervention folks as having severe cognitive and communication delays, and moderate physical delays. I know some of you here in Sabre Space have special needs kids of your own, so I'm throwing this out there asking for any advice. Either with Autism, or dealing with the various programs designed to help kids with special needs. Ollie is an awesome kid. I just want as much information as I can get, so I can help him out as much as possible. I'm scared, as any parent would be, I think, but I'm also excited to be able to help him adapt to a world designed for people who interact with it a little differently than he does. Thanks. Quote Link to comment Share on other sites More sharing options...
Weave Posted January 3, 2014 Report Share Posted January 3, 2014 You've alluded to this in the past. Good luck. sincerely. I got nuthin for experiences, other than that Chinese exchange student that I really think was in the spectrum. A former co-worker had a very autistic child. He was attending a school for the deaf. Apparently signing (or maybe it was the teaching techniques) was an effective communication means for some autistic children. My co-worker indicated improvement but they weren't able to stay with the program for various non-student realted reasons. Quote Link to comment Share on other sites More sharing options...
wjag Posted January 3, 2014 Report Share Posted January 3, 2014 (edited) Well from my personal experience, I would say that early intervention is the key. My son is now 16. He is on the spectrum. No one can agree what to call it, but he is high functioning. We have aggressively worked to bring him along. Relatives who don't see him regularly tell us they can see the changes. He is in 9th grade and on diploma track. It is a daily struggle to get him to matriculate with others and maintain grades. It is the hardest thing I have done and have to do in my life. He is the number 1 item on my bucket list: to see him graduate with a diploma. He is my hero. We don't medicate our son. That stuff and its affects are scary. I would rather put up with the quirky behavior than have him under the affects of medication. The decision to medicate or not is a very difficult one and will depend on many factors including his behaviors and mannerisms. All the best.. It is a life long journey now. Feel free to PM me about specific questions. We have a world of experience with hospitals, doctors, testing, quacks, diets, medication, practices, teachers, adminstrators, lawyers, trusts, IEPs, and friends/family/siblings. All will have an impact in your future. Edited January 3, 2014 by wjag Quote Link to comment Share on other sites More sharing options...
nfreeman Posted January 3, 2014 Report Share Posted January 3, 2014 God bless you and your family, GCOE. It will be alright. Quote Link to comment Share on other sites More sharing options...
cdexchange Posted January 3, 2014 Report Share Posted January 3, 2014 No experience here, no kids at all...but just wanted to wish you the best. I only know you from your posts, but based on those it's obvious to me that you will do the very best for him. Quote Link to comment Share on other sites More sharing options...
Johnny DangerFace Posted January 3, 2014 Report Share Posted January 3, 2014 I'm at work now on my phone, but I use to work as an ABA therapist for autistic children and have a lot of experience before switching career paths. Early behavioral therapy is crucial and can/will make a world of difference. I can say that while it's scary, it's something you can face with a positive attitude. Some of the best and happiest children iv encountered in my life were severely autistic. I also recommend you and your family learning the fundamentals of ABA therapy. It's something I can't recommend enough Quote Link to comment Share on other sites More sharing options...
FolignosJock Posted January 3, 2014 Report Share Posted January 3, 2014 I dont have personal experience but a friends mother is one of the leading writers about Autism. Specifically Aspergers. http://en.wikipedia.org/wiki/Rudy_Simone If that is a possibility I am sure I could get you into contact with her. She is a really great lady. Quote Link to comment Share on other sites More sharing options...
Corp000085 Posted January 3, 2014 Report Share Posted January 3, 2014 My middle child, Ollie, has recently been assessed as Autistic. We haven't been up to Strong for the official full medical diagnosis, apparently this takes months, but we've recently been approved by the County for 4 extended sessions of in-home therapy per week. Ollie is 2 years, 4 months, and was identified by the Early Intervention folks as having severe cognitive and communication delays, and moderate physical delays. I know some of you here in Sabre Space have special needs kids of your own, so I'm throwing this out there asking for any advice. Either with Autism, or dealing with the various programs designed to help kids with special needs. Ollie is an awesome kid. I just want as much information as I can get, so I can help him out as much as possible. I'm scared, as any parent would be, I think, but I'm also excited to be able to help him adapt to a world designed for people who interact with it a little differently than he does. Thanks. I am a special education case manager for my school system's preschool department. Based on your child's age and the fact that you mentioned "Early Intervention", it sounds like your child is in the Part C Infant/Toddler Program. Things will begin to move quickly between now and when your kid turns 3, but long story short, your local school system will work with your Part C providers and "transition" her from the Part C program to the Part B program (that's public school special education). I'm at work right now, but I'll try to send you a PM later with much more details. I have plenty of experience as a classroom teacher for children with ASD as well. If you do not hear from me by tonight, send me a PM and that'll trigger my memory! Quote Link to comment Share on other sites More sharing options...
Johnny DangerFace Posted January 3, 2014 Report Share Posted January 3, 2014 Also, what state do you live in and are there any universities nearby? Quote Link to comment Share on other sites More sharing options...
SwampD Posted January 3, 2014 Report Share Posted January 3, 2014 GCOE, I don't know where your son falls on the spectrum, but if my daughter isn't at the bottom of it, she is darn close. She is 9 and started to be diagnosed very early (before age one). Early intervention was great and she actually took her first steps during one of her sessions (her PT got all choked up and said she thought it would be years before she would walk). She is non verbal, well, non everything, really, and even though we get after school services 5 days a week for 2 hours, my wife and I are still basically her full time care givers. Just remember that you are your son's best advocate. There is a lot of help out there. Sometimes I am amazed at how much. Take all you can get and fill out the paperwork for things you are not even sure you need. You never know what you'll get (somehow, my wife found us a free $11k to remodel our bathroom to make it easier for us to bath and change her). The main thing, though, especially at this early stage, don't forget to love him for who he is and not dwell on what he isn't. Having to go to all the Drs and therapists and reciting his history and missed milestones over and over will be a real drag. It got to the point where I didn't want to find out what was wrong with her anymore (not that anyone knows anyway) because it made me feel like chit. I just wanted to go home and enjoy my daughter. Feel free to PM and good luck. And just remember… http://forums.sabres...400#entry527911 Quote Link to comment Share on other sites More sharing options...
PASabreFan Posted January 3, 2014 Report Share Posted January 3, 2014 I've got nothing to add except a virtual pat on the back for GCOE. What a good dad. Good luck with everything. Quote Link to comment Share on other sites More sharing options...
biodork Posted January 4, 2014 Report Share Posted January 4, 2014 This might sound odd, but have you heard anything about pediatric massage therapy? My massage therapist has an autistic son (he's 4 or 5), and she received specific training as a CPMT from this organization: http://www.liddlekidz.com/autism-massage-training.html http://www.massagetoday.com/mpacms/mt/article.php?id=14431 Obviously she's too far for you, but maybe it's worth seeing if there is someone in your area who's certified in this as well? Best of luck to you and your family, GCOE. And good on all the others here who've offered their time and assistance; this community really is like none other. Quote Link to comment Share on other sites More sharing options...
inkman Posted January 4, 2014 Report Share Posted January 4, 2014 You've alluded to this in the past. Good luck. sincerely. I got nuthin for experiences, other than that Chinese exchange student that I really think was in the spectrum. Crazy story man Quote Link to comment Share on other sites More sharing options...
tom webster Posted January 4, 2014 Report Share Posted January 4, 2014 My middle child, Ollie, has recently been assessed as Autistic. We haven't been up to Strong for the official full medical diagnosis, apparently this takes months, but we've recently been approved by the County for 4 extended sessions of in-home therapy per week. Ollie is 2 years, 4 months, and was identified by the Early Intervention folks as having severe cognitive and communication delays, and moderate physical delays. I know some of you here in Sabre Space have special needs kids of your own, so I'm throwing this out there asking for any advice. Either with Autism, or dealing with the various programs designed to help kids with special needs. Ollie is an awesome kid. I just want as much information as I can get, so I can help him out as much as possible. I'm scared, as any parent would be, I think, but I'm also excited to be able to help him adapt to a world designed for people who interact with it a little differently than he does. Thanks. Good luck to you. We have a friend with an autistic child who has become heavily involved in local support groups and in fighting with the school system to get her son what he needs. She has been as devoted to her son and the cause as anyone I know. I would be happy to put you in touch if you think it would be beneficial. Quote Link to comment Share on other sites More sharing options...
TrueBlueGED Posted January 4, 2014 Report Share Posted January 4, 2014 Wish I had some advice for you, but I don't. You and your family do get my best wishes though. Quote Link to comment Share on other sites More sharing options...
darksabre Posted January 4, 2014 Report Share Posted January 4, 2014 I gotta say, threads like this are why I love this forum. Look at the people and their experiences that we have to offer. It's awesome. Quote Link to comment Share on other sites More sharing options...
Ghost of Dwight Drane Posted January 4, 2014 Report Share Posted January 4, 2014 GCOE, I don't know where your son falls on the spectrum, but if my daughter isn't at the bottom of it, she is darn close. She is 9 and started to be diagnosed very early (before age one). Early intervention was great and she actually took her first steps during one of her sessions (her PT got all choked up and said she thought it would be years before she would walk). She is non verbal, well, non everything, really, and even though we get after school services 5 days a week for 2 hours, my wife and I are still basically her full time care givers. Just remember that you are your son's best advocate. There is a lot of help out there. Sometimes I am amazed at how much. Take all you can get and fill out the paperwork for things you are not even sure you need. You never know what you'll get (somehow, my wife found us a free $11k to remodel our bathroom to make it easier for us to bath and change her). The main thing, though, especially at this early stage, don't forget to love him for who he is and not dwell on what he isn't. Having to go to all the Drs and therapists and reciting his history and missed milestones over and over will be a real drag. It got to the point where I didn't want to find out what was wrong with her anymore (not that anyone knows anyway) because it made me feel like chit. I just wanted to go home and enjoy my daughter. Feel free to PM and good luck. And just remember… http://forums.sabres...400#entry527911 Your video is probably my favorite post ever. Pure, unadulterated joy..... And I don't care what anyone says....at the end, she is telling you like any other alpha female..."Get off your ass, numbnuts, and let's do it again!" Weep not for the compliment of being immersed in challenge that leads to growth, but for those so complacent as to never know what matters.... Quote Link to comment Share on other sites More sharing options...
Doohickie Posted January 4, 2014 Report Share Posted January 4, 2014 Our younger son "failed out" of nursery school. At the time he was about the same age as your son. If you ever saw the scene in Mr. Holland's Opus where they find out their son is deaf because he was throwing tantrums cuz he couldn't communicate? My son was like that a lot. He was diagnosed with "autistic spectrum disorder"- not full-blown autistic, but in that direction. My wife strongly advocated for him to get the help he needed, but the other side is she also made sure they put him in the highest functioning environment possible. She wanted to make sure he didn't get "warehoused" in a classroom where he wouldn't be given what he needed to improve to his potential. So from almost three, he went to a full-time early intervention setup with speech therapy, occupational therapy, all that. From that he transitioned to where he was in the same school with our older son, but was full-time special ed. Then, to part-time special ed. By the time he got to middle school, he was able to function without special help. By high school he took some AP classes and he actually graduated college this past month. We really had to fight at times to get him the right treatments, therapies, placements, etc. The school districts want to just put the kids where they don't cause trouble; you have to convince/motivate/work with/push them to get what's best for your kid because they're not nearly as interested in outcomes as you are. One thing that my son got when he was about 5 or 6 was a program called Fast Forward. As I recall, it was a computer program that helped him learn how to catch up with the aspects of speech he didn't learn the first time around. It monitored his progress each day, and the following day's lesson was tailored to the results from the previous day. If you can get the school district to pay for it (or if you have the means), look into Fast Forward. It made a big difference for our son. Quote Link to comment Share on other sites More sharing options...
LastPommerFan Posted January 4, 2014 Author Report Share Posted January 4, 2014 Thank you muchly everyone. I will have some individual responses for some if you, but I wanted to thank everyone for their input and/or encouragement. This place is awesome. Quote Link to comment Share on other sites More sharing options...
blugold43 Posted January 4, 2014 Report Share Posted January 4, 2014 (edited) oh...where to begin. on 3/25/12, my son was labelled with "moderate" autism at 4yrs, 4 months. we were devastated of course...he had been on a downward spiral developmentally for 3+ yrs but every concern expressed to our pediatrician was answered with, "he's fine...really, he's fine." he was definitely normal until age 1, but at that point his language and social growth slowed. and by 3 1/2, he was barely functioning in preschool. he also had terrible dietary issues, including constipation, and stopped gaining weight. all he wanted was milk, which in itself is a huge red flag for the ASD spectrum, but i had no idea. long story short, we found a D.A.N. dr., who helped us sort out the nutritional problems and the results have been miraculous. if you want to p.m. me I will send you my cell number and i will tell you everything we did and why, and what the results have been. we really have seen terrific results. thank god you've gotten a diagnosis as early as you have- i am so angry at myself that we didn't choose another path when our pediatrician was not responsive to our concerns. my son's atec score has gone from 40s to 20s in less than 2 years. but then, where might he be now if we had trusted our instincts and gone elsewhere for help? we'll never know, but i think about it all the time and i still feel terribly guilty about it. the one piece of advice i will give you and everyone reading is to place MAXIMUM emphasis on addressing nutritional concerns. that, more than any therapy he's received, has allowed my son to start the physical/cognitive/social "catch up" process. if tou have a child on the spectrum, seriosuly consider getting every speck of gluten, dairy and soy out of their diet asap. there are valid medical reasons for this and i can't tell you how much it has helped my son. Edited January 4, 2014 by blugold43 Quote Link to comment Share on other sites More sharing options...
SwampD Posted January 5, 2014 Report Share Posted January 5, 2014 (edited) Your video is probably my favorite post ever. Pure, unadulterated joy..... And I don't care what anyone says....at the end, she is telling you like any other alpha female..."Get off your ass, numbnuts, and let's do it again!" Weep not for the compliment of being immersed in challenge that leads to growth, but for those so complacent as to never know what matters.... This has been making me laugh and probably explains more of her behavior than being autistic. In fact, I've been thinking of printing up shirts that say "I'm not Autistic, I'm just an Assh#le!" Maybe with a puzzle piece in the shape of giving the finger. If this offends anyone, get over it. There will be lots of stuff that is going to offend you in the future that you are just going to have to find the humor in to survive. Edited January 5, 2014 by SwampD Quote Link to comment Share on other sites More sharing options...
SwampD Posted April 2, 2014 Report Share Posted April 2, 2014 Hey, it's Autism Awareness Day. I think instead of wearing blue today, I'm just going to bring my daughter to work and let her loose. We'll be off the air in seven minutes and she'll leave that place looking like one of those videos where a deer gets trapped in the convenient store. Quote Link to comment Share on other sites More sharing options...
darksabre Posted April 2, 2014 Report Share Posted April 2, 2014 Hey, it's Autism Awareness Day. I think instead of wearing blue today, I'm just going to bring my daughter to work and let her loose. We'll be off the air in seven minutes and she'll leave that place looking like one of those videos where a deer gets trapped in the convenient store. :worthy: Quote Link to comment Share on other sites More sharing options...
LastPommerFan Posted April 2, 2014 Author Report Share Posted April 2, 2014 Hey, it's Autism Awareness Day. I think instead of wearing blue today, I'm just going to bring my daughter to work and let her loose. We'll be off the air in seven minutes and she'll leave that place looking like one of those videos where a deer gets trapped in the convenient store. It is World Autism Awareness Day. Autism Speaks got them the light the Empire State Building in Blue tonight. That's pretty cool. I've seen what just three months of totally intense intervention has done for my son. While he still has emotional out bursts, he has started to identify the actions that help him calm down. This week, several times when he has exploded into one of his frustration-with-how-the-world-works rages, he has run to his room, grabbed his doggy pillow-pet and squeezed it hard (pressure is a common soothing method for ASD kids, one of Temple Grandin's great gifts to the ASD community). The first time he did it on his own, my wife and I literally just stood there in stunned awe. It's not some magical development, his OT had been working with him on this for weeks. Intervention works. Additionally, while Ollie still can't communicate in what we would recognize as a conversation, on Monday we had a great day. After dinner, I told him we were going swimming. He immediately walked into his room and awaited the installation of his swimsuit. Once we had his coat on, he walked to the back door, walked down the stairs holding my hand (we have a second floor apartment) and got in the car on his own. At the YMCA, he got out, held my hand in the parking lot, and practically ran up the stairs and to the locker room. The whole time he followed my verbal instructions ("Hold the railing", "Hold my hand", "This way", etc.) and I didn't need to carry him once. This is mostly huge because he is pushing 50lbs now, and I am a 6' tall 140 lbs soaking wet. We were not selected to be father/son based on my capacity to carry him around. Again, none of this is a spontaneous development. His Speech Therapist has been working on following verbal instructions for months. Intervention works. Today's designation comes from the UN. Autsim isn't just an American Problem. My wife has begun a business relationship with a woman who runs a global autism charity. MOST of the kids who have ASD on this planet don't have access to the programs that we have here in the US, and especially in the Great State of New York. I can't imagine what would be made of my son, or Swamp's daughter, or any of the other Sabrespacelings with ASD in a region of the world with no real awareness of Autism. I find "Awareness" days often times to be trite and useless. Everyone is aware of cancer. We don't need awareness, we need science. This one is different for me, and not solely because I am immediately affected, I am immediately affect by cancer as well. It's different because the biggest weapon to help these particular kids right now is awareness. Early awareness to help drive interventions like those helping Ollie. Awareness of how these people are helped so kids like Swamp's daughter can get the treatments that work without needing pager numbers and home-made purification labs. So I encourage everyone to read something about Autism today, and more importantly, talk about it with your families, friends, anyone. Help people understand that, while it is still a huge mystery, we have some great tools, we just need to be aware of what they are, and who needs them. Quote Link to comment Share on other sites More sharing options...
LTS Posted April 2, 2014 Report Share Posted April 2, 2014 Knowing friends who have an autistic child and others who have gone through significant stressful situations and have seen it tear their family apart...please stay strong for your child and for your family. As I've already seen from some of the comments in this thread.. the lengths that people will go to in support of their child will help redefine them as a person. Lean on that, and be strong in that, and go forward. All the best... it seems as though you've got a great support group starting right here. It's a thread like this that helps me get past some of the more bizarre comments and situations that pop up on here from time to time. Quote Link to comment Share on other sites More sharing options...
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