How to Find Resources for Autistic Families
Archived Q&A and Reviews
- Resources for 2.5-year-old diagnosed with autism
- Recent autism dx for 7.5 year old - feeling lost
- Need to get plugged in to communities and resources
- Books & other resources for coping with autism
- Helping my sister with her autistic 5-year-old
- My 2 1/2 year old was just diagnosed with autism
- Our 3-year-old has just been diagnosed with PDD-NOS
- Resources for my 25-y-o brother coming from overseas
Resources for 2.5-year-old diagnosed with autism
My 2.5-year-old nephew has been diagnosed with autism. He is barely speaking, is developmentally delayed (late hitting most milestones), rates low on adaptive skills, and has some stereotypical behavior (hand flapping), but he seems happy and is very affectionate with his parents (shy with others). He is just starting ABA services through BIA and speech therapy through Easter Seals. We are also beginning the IEP process (parents live in Oakland, but might be willing to move if another district offers better services). I'm looking for advice on parent advocates/lawyers (and how important it is to hire and consult with one), service providers, preschools, support groups for the parents, informative/reliable/helpful resources (books, websites), activities to do with my nephew to help him develop, and how to be a good aunt in this situation. I know that's a lot, but if you have experience with a similar child I'd appreciate any advice you could give in any or all of these areas. Thanks. Concerned Aunt
Our service coordinator from GGRC highly recommended we go to JumpStart (http://www.autismjumpstart.org) -- they are in San Francisco. Maybe you guys have something similar in the east bay or maybe you guys could go to JumpStart. It's a one-week, intensive training program for parents/adults of autistic children. The therapists there are incredibly nice and knowledgeable. I personally found the course very empowering. It taught me better and proper ways to better communicate with my 2yo ASD child -- both verbally and non-verbally. The course is very intensive. I was overwhelmed at first but it's really worth it. mom000
Hi there.. The hardest part is in the beginning (when BIA comes into the home, coordinating therapy ) your sibling is off to a great start! I worked for BIA for years and they are amazing. You'll see a lot of progress. I've worked independently for 10 plus years in the field. I'd be happy to answer any questions or advice on IEPs, advocacy etc. Lindsay
Please have your nephew's parents contact Sandy Westlie (director) at Peter Pan Preschool in El Cerrito (not to be confused with Peter Pan in Oakland!) She will be a valuable resource. My child is not on the spectrum so I cannot speak to your nephew's situation directly, but other parents at the school have expressed that Teacher Sandy was the best thing that ever happened to their family when they were struggling to address the needs of their autistic-spectrum child. (It doesn't matter that your nephew is in a different county. At the very least, Teacher Sandy will be able to give you great information about resources.) Peter Pan's number is (510) 234-5918. Best to call between 3-4pm on a school day. School will be out until the beginning of Sept. (Feel free to ask moderator for my email if you want more contact info.) Maia
I've previously recommended on BPN the book Parenting Your Child with Autism which was written by a good friend and colleague of mine who also happens to be the parent of one child diagnosed with autism and one diagnosed with Aspergers. The book starts with the premise that there is no ''prescription'' for how to handle your child's needs, and as such they help explore ideas and resources so that you can evolve your own strategy for what is going to work for your family. The book is evidence-based (with references) but it's not too jargony and it's an extremely readable work. You can find the book on Amazon: http://www.amazon.com/Parenting-Your-Child-Autism-Strategies/dp/1608821900/ June W.
Recent autism dx for 7.5 year old - feeling lost
Our son , 7 1/2, was recently diagnosed with Autism. Would love to meet other like families to talk & share. We are reeling still and feel a bit lost. We're in Berkeley. J.
A good friend and colleague of mine who also happens to be the parent of one child diagnosed with autism and one diagnosed with Aspergers recently co- authored a wonderful book called Parenting Your Child with Autism. The book starts with the premise that there is no ''prescription'' for how to handle your child's needs, and as such they help explore ideas and resources so that you can evolve your own strategy for what is going to work for your family. The book is evidence-based (with references) but it's not too jargony and it's an extremely readable work. You can find the book on Amazon.
I know from experience that you are at the start of a difficult path, but reaching out for support is so wise. I have a 15 year old autistic son and my learning curve has been steep and rocky! I'd be happy to get together with you and also know others who might be interested. Sending you good thoughts.
Need to get plugged in to communities and resources
My son was diagnosed with high-functioning Autism a few months ago on his 3rd birthday. I really want and need to get plugged into Autism resources, communities and groups. I could probably post a question a week on BPN, but recognize there is probably a better forum for all of my Autism-specific questions. So please share, point me in the right direction... online boards, communities, blogs, books, groups conferences. Also, is there anything local/east bay I should know about?
As background to help guide recommendations, we anticipated the diagnosis and have been doing intensive ABA and speech early intervention for the last year (through RCEB). We're ready to move forward, eyes open and want to have all of the resources possible at our disposal as we do so. I see that my son has a beautiful and unique mind and I want to celebrate and foster it, while addressing challenges that might get in the way of his learning or making friends. He's really high functioning, and since he's only three, it's hard to know what that really means.
I really appreciate and look forward to your recommendations. -Mom of a High-functioning Autistic Boy
Hello Mom, I too have a 6 year old son with autism and I live in the east bay. Have you heard of the CARE parent network? http://www.contracostaarc.com/html/care.html They have monthly support group meetings and tons of resources. Also the Autism Family Support Project at We Care in Concord http://www.wecarebmcc.org/autism_project/afsp.htm They have support groups and autism family friendly events. Also there is the UC Davis MIND Institute http://www.ucdmc.ucdavis.edu/mindinstitute/ and if you go to their web site there are plenty of new autism studies you can participate in. We are currently participating in the Curemark study, a study on a new enzyme used to treat autism. Have you tried a DAN doctor yet? http://www.autism.com So many things to list here better to email me! Sounds like you are on the right path though. Hugs! Alicia
When my son was first diagnosed I spent a whole lotta time at http://www.autism-pdd.net/forum/default.asp. I could probably list about 8 million different blogs for you, but I'll save the space and ask you to email me if you're interested; I've also recently found a thriving autism community on Twitter. You didn't mention your school district, but if you're at BUSD there's BSPED: http://www.berkeley.net/index.php?page=bsped. I hope this is helpful, there's a ton of stuff out there, if you need somebody to help guide your way, feel free to contact me directly. I've been there! Jill
There was a really great TED talk about research at Harvard on the autism spectrum. Half of kids in the study actually had brain seizures (as shown by EEG) and came to full functioning with medication. Here's the link: http://www.ted.com/talks/lang/eng/aditi_shankardass_a_second_opinion_on_learning_disorders.html
Not that this changes the need for other resources, just thought her perspective as a neurobiologist was useful. good luck. anon
I'm forwarding here a reply for my request for resources from another ''autism mom''. Reply to me directly and I'll connect you to Anne if you so desire. Good luck, Richard
''Well, both the autism e-mail lists I am on are based in Washington, so a lot of the announcements & so forth would not be helpful to her. I'm thinking that a local support group might be more appropriate for her. Fortunately, they are springing up all over the place. (Well, it's not really fortunate, because it means that more & more people are being affected by autism!)
If she goes to www.tacanow.org (Talk About Curing Autism Now), they have a list of local groups. And they have some information on their site.
The Autism Research Institute has a site at www.autism.com.
And there is also www.generationrescue.org , which can set a person up with a ''Rescue Angel'' in her area -- an autism parent who has been in the trenches a while, & can offer advice & support. (This is the group that Jenny McCarthy has thrown her support behind.)
Do warn this woman that people in the autism community are VERY opinionated, & everybody thinks that what worked best for HIS kid is what EVERYBODY should do. The fact is that autism is VERY complicated, & there are a lot of nuances & variables. Tell her not to let anybody push her around. Anne
My brother has an autistic son diagnosed around 3 years old when he suddenly stopped speaking. He and his wife turned to the UCLA Medical Center for help and seemed quite satisfied there. This was over the past 20 years so things may have changed but it is worth a look I think. anon
One great resource is http://www.aspergersresource.org/. This website is all-inclusive and provides Bay Area resources. Hope this helps!
I'm sure you'll get a lot of responses, but let me add mine to the mix.
My son was diagnosed with HFA around his third birthday as well. He's seven now and doing great in a mainstream 1st grade class. Early intervention really is key, in my experience, as is a positive outlook of acceptance and a love for your child's gifts and strengths. Sounds like you've got both of those!
Check out The Thinking Person's Guide to Autism, website and community with national reach, run by a bunch of local Bay Area folks. They have essays and articles every day by parents, practitioners and people who themselves are on the autism spectrum. It's a wonderful source of positive support and science-based information. http://thinkingautismguide.blogspot.com/
The book ''Quirky, Yes. Hopeless, No'' has tons of advice and ideas for working with everyday challenges.
Finally, I write about our family's experience at http://hyperlexicon.blogspot.com/ and would be glad to answer any additional questions that come up for you via email. You're not alone! Christa
1) The Family Resource Network, in the Bananas building on Claremont Ave. near the DMV - http://www.frnoakland.org/
and 2) Einstein's Clubhouse, info about homeschooling Asperger kids in Berkeley, online at http://EinsteinsClubhouse.org John
Books & other resources for coping with autism
We are finally in a place where we sort of know what we're dealing with and starting to understand what we can do to help manage some of my son's issues, but I feel completely traumatized by the last 5 years of meltdowns, being stared at, the daily struggles, etc. etc. I'm hoping there are some books, like other parents' stories that can help me start a little bit of my own emotional recovery and get some better perspective. I'm hoping to start with a cheaper alternative to therapy for now. Any recommendations? anon
Please read this compelling blog: http://hyperlexicon.blogspot.com/
East Bay writer/BPN mom Christa Dahlstrom does a great job of describing the fears, challenges, and fun of parenting a 6-year-old on the spectrum over the last three years or so. I'd recommend you check out some of the excellent blogs she links to, and/or contact Christa via on her her 'comments' section. Best of luck to you & your child.
I don't know how old your child is or what area of the spectrum you are dealing with, but I went through much the same with my son, who has mild Aspergers. When he was 2,3, and 4 and even older I couldn't take him into any store or restaurant without him having a tantrum and shrieking, and not hearing a word I said to him. Naturally everyone was staring at me like I didn't know how to control my kid. Now he is 10 and 90% of the time he is pure joy. The rest we are dealing with and he is aware of his issues and working on it. It gets so much better. That is my message for you. He/she is probably very intelligent so if you nurture that side of him/her you are on the right track. Read aloud and take him/her to the library a lot. And hugs, hug him/her when he/she is getting over his/her tantrum. Don't listen to the 'experts' who tell you to ignore him/her. Hug him/her. They crave that. I wish you lots of patience and love. been there
Helping my sister with her autistic 5-year-old
I am very worried about my sister who is having a hard time coping with her autistic 5 year old son. I am looking for advice and recommendations for resources in Santa Cruz or San Jose. I think there are many issues going on, including my sister's depression and isolation which makes it hard for her to get good help (she is married and has a supportive husband, but it is clearly not enough). She is pretty pessimistic about his chances for sucess in public school and feels her only hope is to home school him. Another issue is what can I and our other family members do to help her and her son? She has trouble asking and when I make suggestions I often feel as if I am judging her for not doing things right. I want to support her but I also think she needs to deal with her depression so that she can be a better advocate for her son. She has had horrible experiences with doctors and meds, so I don't know how likely she would be to seek help from a psychiatist. I feel as if my post leaves very little for people to suggest, but I am hopeful. Thanks for you help. anon
First, I want to say that it's so GREAT of you to want to reach out to your sister and help her. Having a child with autism is extremely difficult and she needs your support, it's wonderful that you care so much about her and her son. I don't think your post left little for me to suggest, but without knowing you or your sister or her son, I can only tell you what has worked and not worked for me with my various extended family members.
My first thought is that she probably does feel judged by your well meaning suggestions. I'm not saying that you ARE judging her, but there's a good chance that she already feels judged by the rest of the world, and therefore does from you, too. This is hard stuff, in addition to being depressed, she might be blaming herself, she might be resentful of your children (if you have them) who are developing typically. She might feel isolated or lonely or guilty or angry or just so many other things.
Therefore, I would recommend not making any suggestions. Instead, ask her what she needs from you. Something like ''I love you and I want to help. What can I do?'' And say it a lot, particularly if she has trouble asking for help, she could say ''nothing'' at first, but after the 10th time of asking she might tell you something. Make sure she knows that you're there to support her and not to tell her what she's doing wrong (not that you are! That's just how she might see it.)
Secondly, I would learn all that you can about autism. Not so that you can teach her anything, but just so that you can be armed with knowledge. And tell her you want to learn. Ask her what her most important resources are, what websites or books you can read. Make sure she knows that you want to make an effort so that you can help her.
And, she needs support, but not from you; from other parents who have been there. And the beauty of the internet is that it doesn't matter where you live, you can find people anywhere in the world. I have a large network of friends with autistic children, and very rarely do I ever see or talk to them in person. They live all over the world, and yet we ''speak'' every day. Some possible resources:
http://php.com/ - Parents Helping Parents. Located in the South Bay somewhere, it's the best chance of finding real life people to connect with
http://autism-pdd.net/ - Lots of good info, including a very active support forum.
I have more, but none that I'm comfortable posting to the world. Feel free to contact me directly if you want more info or just want to talk some more. Good luck!! Jill
There should be a regional center in her area that can offer some sort of assistance. kevin
I think you and I must be in parallel universes. My sister has very similar problems (for similar reasons) with her almost five year old autistic son. I recommend that your sister contact SPIN (Special Parents Information Network) located in Santa Cruz County. Contact them at www.spinsc.org or (831)722- 2800. She can also contact San Andreas Regional Center to see about qualifying for their services. She can also call the Santa Cruz County Office of Education for help through the school district. Good luck, I understand your desire to help and the frustration and sadness that go along with watching a loved one struggle with obtaining help for their child. Feeling helpless too
My 2 1/2 year old was just diagnosed with autism
My 2 1/2 year old son was just diagnosed with autism and my husband and I feel at such a loss regarding support, resources, tips, advice. We have another appointment this week to find out more about therapies, but we just feel like we are floundering in limbo and would love if anyone could point us in the right direction about what we should be looking for in regards to therapies, support networks, etc.
We live in Walnut Creek but will travel whereever we need to to find out more or to help our son. He was supposed to start preschool in the fall, but my hunch is that we will need to look for something that better meets his needs and would love any advice from parents who are in or who might have been in a similar situation.
Our hearts are breaking that we didn't realize there was a problem sooner..I guess we were guilty of just assuming these traits (limited eye contact,delayed speech, little interest in other kids, etc) were simply indicative of his personality...having no idea that they were such red flags for autism. So at this point we want to do whatever we can to learn what we can do for him.
A sad Mom who knows things will get better...but is just crushed right now
I can imagine that this kind of news is hard to swallow. Blissfully there is much more we know about Autism now than a decade or two ago, and there are different treatment approaches to choose from.
You may get MANY responses, so I will be brief
An excellent consultant in this area is Dr. Ilene Lee - email is ilenelee[at]aol.com. She specializes in Greenspans floor work.
Another approach is the work of the KAUFMANs of the Option Institute. You may find their book SON RISE intriguing. They developed their method for working with their son and totally CURED the autism ! I met him when he was in his late teens. They have an institute on the East Coast. You can Google them.
Treatment gets costly but early intervention will make a WORLD OF DIFFERENCE.
Dr. Ariel Lenchner
(my specialty is early literacy and learning disabilities)
First, let me say that I'm so sorry you're having to go through this. Having lived with the dx for about a year and a half, I can say that the hardest part about the whole thing is the heartbreak of it all. I worry all the time about how he'll be when he grows up, how other people will judge him, how other people judge him now, how he feels about it all, etc.
You have so many options right now and I'm sure it feels overwhelming. In fact, I'm pretty sure I posted a message similar to yours when we first found out. Your son is under 3 so you qualify for services at The Regional Center, which should be the first place you call if you haven't called them already. Please feel free to contact me directly and I'm happy to share with you everything I know and have learned over the years. I've been where you are and I'm more than happy to help!! Jill
Hi, You are right, it will get better. There is a myriad of information and new therpies out there for this condition. You are not alone, the percentage increase in Autism in the last 10 years is staggering. There should be regional centers in your area that can offer help and advice. Parents Helping Parents website is usefull. They are located in San Jose. Occupational and Speech therapy are very usefull, along with dietary modifications,such as gluten free and caseinne free diets. There are doctors that specialize in DAN (defeat autism now) protocals, my therapy-The Sensory Learning System has proven very valuable www.sensorylearning.com. There is also Auditory Integrative Training, and hyperbaric oxygen therapy to name a few. The bottom line is Keep Trying, the therapies and dietary modifications do improve quality of life. Bryan
You may not realize it now, but the fact that you recognized the autism at 2 1/2 puts your child at a great advantage. He is able to get the therapies he needs much earlier than kids who are diagnosed at 5 and 6 years old. My son was diagnosed at 3.9 years old and although the ''autism'' doesn't go away, I see his potential now and I know it's because he got a head start. You have an even earlier start. I was sad too, my feelings were very similar to yours. So I will just say what I wish someone would have told me at that time of getting the diagnosis: Instead of looking at what he can't do, think of others ways he will be able to do it. You'll spend the rest of his life looking for alternate ways for him to learn. You will appreciate every accomplishment, not just the ones that every other parent witnesses and you will never take another one for granted. He is a special blessing and I have learned so much from mine in his eight years, so much that I wouldn't change a thing about him. Mom to a PDD Kid
I'm very sorry to read about your difficult situation. Although I do not know much about the topic, I recall Mothering Magazine issued a Special Autism Edition in their Jan-Feb 2006 publication. You can buy back issues at mothering.com. The site may have further resources to help, too. And I am sure this community will give you plenty of useful advice. anon
I read your post and had to reply. I recommend calling the Department of Communicative Disorders at Cal State East Bay (Hayward) and speaking to Audra Elliott SLP-CCC for resource information. Additionally, web information is invaluable. I actually have several excellent autism books/resources that I could allow you to copy as well as some websites that I have found to be helpful. There are MANY therapy choices available and it will just involve alot of research on your part. Unfortunately, there are no easy answers here. I wish you luck. sam
Was your son diagnosed with Autism from a private developmental pediatrician or neurologist or from the Regional Center?? Whoever gave your son the diagnosis should have also given you or recommended a developmental program to address his needs. If you are connected with Regional Center, your case manager would be able to assist you with a program (no cost to you). This is an organization that assists the developmentally disabled population and in your son's case (early intervention)...can set up a program for him. Most families chose an ABA program along with speech and occupational therapy if needed. It depends on your child's needs. There are also a lot of support groups out there. You can seek services independently but it can be very costly. If you are not connected with the Regional Center of the East Bay...the number is 510-383-1200. Ask for the intake/ assessment unit for children under three. good luck to you. Anonymous
First of all, there's a new novel out called Daniel Isn't Talking that I think would be great for inspiration. Also, there are a number of list servs on the web that can be very useful with things like locating resources, getting information, etc. If you can't find them you can email me at www.ayeletwaldman.com and I'll hook you up with a very experienced and generous mom. Ayelet
Hi - I am an Occupational Therapist who has worked with many children with Autism. I'm sure you are freaked out and sad and going through your own process right now. But let me just chime in and say that the Autistic kids I have worked with have all been such happy little souls that I never felt sorry for them for a minute. It's the hardest for the parents to readjust their expectations, negotiate therapy, home programs, etc. But there is so much amazing work being done with Autism right now that you will be able to find lots of tools, therapists and teachers to work with you to make his life great. For now I suggest you call Regional Center of the East Bay and ask them how you become a client. Typically you get a referal from your doctor. Regional Center provides in home therapy to kids until they are 3 and in the school system. You will have access to speech therapy, occupational therapy and a home based teacher to come out and give you things to work on at home. So call them right away so he can get care before he's 3. When he turns 3 he will receive school based help from the school district. And I would try to just keep enjoying and loving all the things you love about your son before you even had a diagnosis for him. The diagnosis will help you/him get the help he needs to flourish, but don't let it limit his unlimited potential as a person. Best of luck, Sirena
There is hope for your son! There is a wonderful Doctor who is specialized in working with kids who are autistic. Many of my friends are in the same situation that you are and have greatly benefited from seeing Dr. Dave Traver. Best of luck to you and your family. Here is his contact information:
Dr. Dave Traver M.D., FAAP 1261 E. Hillsdale Blvd. Foster City CA 94404 650-341-5300 phone
You'll probably get a lot of recommended reading but I would be sure to read The Impossible Cure by Amy Lansky and then go see a classical homeopath Into the alternatives
My daughter was also diagnosed at 2.5, and I remember that fear and guilt like it was yesterday. My heart goes out to you! Now, a year and a half later, I have learned so much, grown so much, and seen so much amazing power and advancement in my daughter that those first days seem like a lifetime ago. You are not alone! There are so many wonderful educators and resources out there, and you CAN access them. Please write me, and I will give you all the help I possibly can Tara
May 15th TIME Magazine had an interesting article on autism and a model treatment program in the schools. The good news is your discovering it at such a young age, there are volumes of resources and treatments.
There is such a wide range of functioning on the spectrum of autism it's difficult to recommend the best treatment. 50% of autistic children will never speak according to 1995 statistic I learned at a PECS conference for lower functioning autistic children. It sounds like your child has some speech.
Hopkins pre school in Berkeley has provided services (including speech therapy)for many children on the spectrum starting at age 3. Alta Bates in Berkeley also has treated many early intervention and pre school age children. For speech therapy Michelle Garcia Winner is one of the best known in the area (San Jose)who specializes in high functioning autism and non verbal disorders. It sounds like your child needs lots of verbal language therapy, pretend play, turn taking, and eye contact. She may be someone to keep in mind when he is older, or for a referral. Eye contact may be the only socialization goal to work on and expect results for age 2-3. Several children without Autism do not engage in interactive play and interactive conversation until age 3-5.
I'm not sure of resources in the Walnut Creek Area, but my understanding is Insurance will cover speech therapy for children younger than school age.
Hope this helps! Pamela
I am sorry to hear about your baby. I too have a child with autism. I would urge you to contact the autism research center in San Diego. You can find them on the internet. Also find your local TACA chapter (Talk About Curing Autism Now). They will be very helpful and even have a new parents guide. There are lots of advances being made in the treatment of autism. I have personally attended a Defeat Autism Now where I was able to see 10 children on stage who have recovered. There are 1000 documented cases of recovery. Good luck to you and feel free to email me off list if you wish. Kathie
Our 3-year-old has just been diagnosed with PDD-NOS
Our three year old son has just been diagnosed with PDD-NOS. We are extremely upset and feel at a loss about what to do next. We are currently waiting for an assesment from OUSD but in the mean time were wondering if anyone in the BPN had any advice about behavioural techniques we can try at home to get us started while we wait for our assesment. Any advice about good books or other resources on the subject? Support groups etc. Most resources I have found on-line seem to address autism alone which is not the part of the spectrum that he falls under. Worried
While you're waiting for OUSD to complete its assessment -- and there is a specific time period in which it must be completed, under federal law (see http://www.wrightslaw.com) -- I strongly suggest that you seek counseling immediately with a therapist who understands special needs. Locally, Dr. Lynda Kravitz in Piedmont (510.420.0888/drkravitz [at] sbcglobal.net) counsels individuals, couples and groups.
As for behavioral help, look into Stanley Greenspan's books and don't be afraid to consider therapies that are used for autism. These range from step-by-step recipes for tasks to learning to read body language to understanding what causes behavior and how to encourage or discourage it. Take a look at ''The Out-Of-Sync Child'' and Carol Gray's Social Stories. Disregard anything by Bryna Siegel; her thinking is outdated at best.
Also, it would be prudent to consult with a special education advocate. Parents and school district administrators work best together when they treat each other as businesses, but it's difficult to not take it personally. An advocate will help you stay calm and focus. There are many advocates; an excellent one is Dana Lear, http://www.negotiatingthemaze.org Anonymous
My 4 year old is also diagnosed pdd-nos. I can totally sympathize with the pain, anger and shock you must be feeling right now. Know that you are not alone, there are a lot of other parents who have been there and who are there right now. Know, also, that a diagnosis of autism spectrum disorder does not mean that your son will not live a happy and fulfilling life. I know it probably feels like the end of the world (it did for me!) but it's not and with support you can get through this.
It's hard to give advice without knowing specifically which issues you're facing because the spectrum is large and every kid is different. My son receives 15 hours a week of intensive therapy (called ABA), and if I had to do it over again, I would have started it immediately after receiving his diagnosis. I was a little bit in denial about it, but at some point it became impossible to stay there. Since starting ABA he's made at least 9-12 month's worth of progress in a 3 month period.
Check out autism-pdd.net for lots of information and an online support forum. Don't just rely on the school district for an assessment, call Behavioral Intervention Associates (www.bia4autism.org) for more information about therapies and treatment. There's an online support forum in the Bay Area (I think it's called specialneedsnetwork at Yahoo groups, I'm sure somebody will post the address). I also have a support group that meets every other week at my house. Please feel free to contact me directly if you want to ask questions of somebody who has been there or if you want to come to our group. Jill
Dear ''worried,'' I am a parent of a child who has a similar diagnosis and I know how overwhelming it is when you first find out (and how discouraging it is to have such a non specific, not very helpful diagnosis). I am currently running a free program at the Berkeley YMCA for children (ages 3-4) who have developmental delays. It is called the Swim and Gym Program. It includes a swim lesson, tumbling class and a support group for the parents (childcare included). The program is on Thursdays from 1pm until 3:30. Before I was the coordinator for this program, my son and I were participants. It was really a life saver for both of us. Please feel to call me and leave me your number so I can call you and tell you about the program. Or,if you are not ready or able to dive into the program, but would like some resources, I can give those to you. Hang in there, Rachel.
You can try a book, The OASIS Guide to Asperger Syndrome by Bashe & Kirby. Also, check out the MIND Institute at UC Davis. Great websites about learning disabilities and developmental issues are Schwablearning.org, LDonline and Allkindsofminds.org. a school psychologist
Hi -- I'm not familiar with OUSD but have first hand experience with PDD-NOS (my son was diagnosed at age 3 and is now 6). Send me a note and I'll send you my phone number and I can give you some guidance. Judy
Dear Worried, Your child is so young that it's hard for anyone to give him a more concrete diagnosis! We were there at age 4, and also had the ''not autism but something'' diagnosis. My advice to you is to review some of the autism material, selecting by symptom grouping. For example, if your child has a speech delay, get him speech therapy asap! and private, one-on-one to supplement if you can afford it.
If you feel he has a hard time in social settings, or with personal control (tantrums etc) have a look at the sections of autism writings that deal with this topic. If he has sensory issues and could benefit from OT, this is often covered by group insurance plans.
My son is 10, and we have pursued a lot of similar therapies in the 6+ years since his diagnosis with PDD-NOS. Now he has moved out of that diagnosis, and we work under ''learning disability'' but same basic symptom groups: Social pragmatic language and social skills, horrible handwriting / drawing (fine motor skills) and some other learning difficulties due to different brain wiring. But it will be years before you can get to such specifics!
Things that often help PDD-NOS as well as autism kids: routine, routine, routine; multiple sensory paths of learning, like saying, drawing/writing AND movement all to learn a given point; learning with music; social stories; lots of sensory input, if he's not defensive about touching.
Some books we have used (do library first! before buying any)
The Child with Special Needs
The Out of Sync Child
The Explosive Child
How to Talk so Kids Will Listen (and Listen so Kids Will Talk)
My Social Stories Book
Lastly, I will be happy to help you if you would like. My son's a lot older, but I have years of experience dealing with OUSD. There are plenty of other OUSD parents out there who can help, too. Please come to the OUSD CAC meetings - the CAC is like the PTA for special needs kids in OUSD. The meetings are usually the 1st Monday of the month. Good luck and continue to reach out for help. - Nancy
I would suggest that you look into behavioral therapies even if your child does not have a full-blown diagnosis of autism. Any worthwhile behaviorist will base treatment on goals indicated by your child's behavior and needs, not on diagnosis. Good luck! anonymous
What a difficult time this must be for your family. One helpful book with ideas for parents to use at home is ''More Than Words'' from the Hanen Centre. I am a speech language pathologist, and the parents of children with PDD-NOS have seen positive changes in their children and enjoyed the activities from this book. I (along with many SLPs) use lots of their ideas in therapy as well. Something else to consider: Assuming your son's language skills are behind for his age, you might want to find out if speech language therapy is a covered benefit under your health insurance and request a referral from your son's pediatrician. That could be a good way to get some help while you wait for school services to begin. Nora
Resources for my 25-y-o brother coming from overseas
I am looking for a private special school for my brother who is a bit autistic and has epilepsy. He will be here with his tourist visa while staying at my place in Rockridge during this summer 06. He is 25 years old and speaks only Korean but very familiar with English language. He is a dedicated Christian, who is warm at heart and very innocent, almost like a boy. In Korea where he lives, there are almost no opportunities or support for people with mental disabilities. I am an only family he's got and luckily I was born here in the states that I wanted to extend some help for him here in the states. I understand that he won't be able to get into state-run programs such by east bay regional office, because he isn't ''american'. So my challenge is to find private organization or institution. However, I am having a hard time with getting such information. I would really appreciate any advice or information if possible. loving sister
You could try contacting ILRC (Independent Living Resource Center). website: http://www.ilrcsf.org 649 Mission Street, 3rd Floor, San Francisco, CA 94105-4128 (415) 543-6222 \x96 Fax (415) 543-6318 - TTY 543-6698 Email: info[at]ilrcsf.org
There is also the Family Resource Network at 5232 Claremont Avenue. Oakland, CA 94618. Tel: 510/547-7322 website: www.frcnca.org/region3.html I found the staff at FRN to be really helpful. You can make an appointment or drop in and talk to someone about your situation and they will link you up with different services or provide you with information about different programs.
It might help too if you are clear about what you want for your brother, i.e. to learn English, to socialize, to have some fun things to do during the day, to get physical or occupational therapy, do art projects, work on academic skills, etc.. Good luck and best wishes. mma