Serge -- I just read your reply. I think that as a person becomes an adult, that person has every right to lead his life the way he sees fit. I agree that constant prompting to be someone I'm not would drive ME nuts. I respect your right to be whoever you truly are. To try to be someone else to please others is mightily wrong. My point is that the world is not going to change for my son. I want him to change within himself to the extent that he CAN. Early intervention HAS changed him. We ALL change based on our educations and experiences. But his education could not make him non-autistic. I never thought it could. I just want him to have as many social skills as he can manage. NOw that he, too, is approaching adulthood, I'm hoping to help him create a life for himself that will make HIM happy. In my son's case, he loves being in social situations. He seeks them out. His behavior in those situations is what I would call immature, but he still loves being with groups of people as well as individual friends. I describe him to give you more of an idea of what my own situation is with my son. Many of the posters here have very, very young children. Their kids are not fully formed yet. They are hoping that, by giving these kids social skills help, the social negatives of the disability will be mitigated. That WILL happen for some and it WON'T for others. I fully respect your right to be who you are now that you are no longer a child. I was hoping to let you know WHY we parents try to get our kids to learn more age-appropriate social skills, though. It breaks our hearts to see them rejected and to see their pain. We're hoping that by teaching them the way of the NT's in this world, we will be able to alleviate some of that pain for them. Oh, yes, and for US, too.
You've gotten great advice from the others posting ahead of me.
I just want to say that I'm glad that your childs grandparents were concerned enough to express thier concerns about your child to you. My Mother was did the same with me about my son. We hear so many stories of just the opposite - where the grandparents are the ones with denial issues.So I really applaude them.
I also want to say welcome to the board
Go Falcons....Hello, my name is Hayley and I also live in minneapolis mn (chaska) Don't wait that long to get into the university of MN. I made an appointmeant at the Alexander center in Eden Prairie and they got him in in 2 weeks. They were all so amazing and it was so interesting to be able to watch all of the different people asses him. I have a 26 month old so if you ever need to talk or ask any questions from a local mama. PM me. Also, the sooner you get the diagnosis the sooner you can get him into a pre-school. I would call first step in your county and go through the school system also so that you can get free at home visits and get the ball rolling to see what really going on with your baby. Please message me if you need to know about the alexander center.
Hayley
By no means was I trying to exclude anyone! I don't know when it could happen (school just started and we're under a TAD amount of stress here!) but I think it would be cool. I don't know if anyone else is up for it?Jcullen,
Relax, you will draw your child out. Just be prepared for a marathon, not a sprint. So you see you have to draw breathe and find your strength. Finding this forum would certainly save you precious time. While you decide on what therapy to pursue, just continue playing with your child. Get on the floor and play away. Get bubbles and blow, blow balloons and be excited about their colors and how the size changes, get an indoor swing. Figure out what he/she likes and let him request for more. Make him giggle, make him smile. Cuddle him and just love him. Those are all helpful therapy. Read let me hear your voice by catherine maurice. Be hopeful and ask your wife to come here and search whatever comes to her mind and post, we would love to chat with her. It gets better. Chin up.
Concernedpa.
My ds was diagnosed a little after his 2nd birthday. He had the same signs as your ds, and our ds was completely nonverbal. He had said maybe 3-4 words at 18 months and then lost it all. The lack of eyecontact, no response to name, we have dealt with it also, I feel for you. But there is hope
A 9/93
B 9/00
C 7/02 Autistic My lil sunshine
Mommy
[quote]Relax, you will draw your child out. Just be prepared for a marathon, not a sprint. So you see you have to draw breathe and find your strength. Finding this forum would certainly save you precious time. While you decide on what therapy to pursue, just continue playing with your child. Get on the floor and play away. Get bubbles and blow, blow balloons and be excited about their colors and how the size changes, get an indoor swing. Figure out what he/she likes and let him request for more. Make him giggle, make him smile. Cuddle him and just love him. Those are all helpful therapy. Read let me hear your voice by catherine maurice. Be hopeful and ask your wife to come here and search whatever comes to her mind and post, we would love to chat with her. It gets better. Chin up.[/quote]Serge165,
I' m sorry you are having a rough day. After a good night's rest things always seem better.
Concernedpa.
Well, more like a rought and interesting/intangling 17.5 years, but thanks for the consolous, it is appreciated. Oh, if only that would be what I needed, my friend, if only that was it :) *laughs* someday, I will be free of these chains, and ascend to Autism and take those dear to me with me. Those who fear me shall cry for the person they once knew, the person that "Succeeded" and "wanted to become normal" shall be no more but a myth. and then I shall become a legend.I'm in mpls also call 348-tots and voice your concerns they have 45 day to do a evaluation ( fed law) and you will not get a DX from them but it is there job to help get your child ready for school.
I also was at wits end when U of M told me it would be a year to asess DD even thought I had a DX . AUGH ! PM me if intested and I can give you a name of a pediatric neuropsychologist to do an evaluation with recomadations of a plan. I've tried many doctors and it is a jungle even in the big twin cities.
I also felt the same way at 19 month my dd started regressing before my eyes- one thing that helped her due to a uknown intolerance of milk I believe removing that from her diet made a change - in sleeping and regresstion . Not for everyone but I think the leaky gut thing is in some kids.
HUGS to you and your wife is lucky to have husband that is not in the river of denile like my DH .
Like everyone tells me your child is young and their future is yet to be formed - getting our dx killed me and gave me hope all at the sametime
now I could do all I could to help my little one find her way- I take each day and make it ours.
Finding people to talk to helps - when she's ready :)
HUGS
Kris mother of dd 2yr pdd-nos and dd 2 months :)
To the original poster - there are other places in Minnesota you can go to get an eval for your son. One that I have heard very good things about is the Frazier Clinic (I don't think I spelled that correctly - it may have an "s" instead of a z?). If you can get in to Dr. Voigt at the Mayo Clinic in Rochester - he is excellent as well. A little different, but once you get used to him - he's great. He diagnosed my ds when others wouldn't and he said about 85% of his colleagues would not have but he believes that the earlier you intervene with our kids- the better!
Anyway, those are two other places for sure that you can check into. There are others I know - but it also depends on what your insurance covers.
Welcom to the board!
Ah yes, Snoopywoman. I happen to be FROM Minnesota. I call it in Poem and soong "The normal capital of the Giant kingdoms" and there are lots of places to obtain "help" one of them being Children's hospital, I believe, Again, like I've said before, ia ms howing my age here *laughs* Rochester happens to be a "Hotspot" for the ASD Diagnosis in MN.Serge165,
Well with the way Jcullen described his ds, he sounded like mine at that age. He would be by himself and not participate in much or interact with anyone, I'm sorry it sounded mean to you but that was what we did draw him out of the sullen silence, inattention and the faraway look in his face. Yes we drew him out. And I am glad we were able to. No apologies. Now he is a participant in the world around him.
Concernedpa.
You are right to be concerned, I had the same problem with my first son getting diagnosed, I went online and ran off every specialist in my state and started calling for an evaluation appointment, a lot of places had a waiting list some up to a year, he was almost 2 at the time, I didnt give up and found Dr. Blackman at the Kluge Childrens Rehabilitation Center (It is at the University of Virginia) and luckily got in within a month.
Yes I believe they can come back, my youngest was doing very well, and then all of the sudden around 14 months he quit eye contact, responding to his name, babling and eating food. I didnt want to jump the gun so I watched him over the next few months and things just kept regressing, Fortunately I called and got him in for an evaluation at the same place. In the meantime I contacted our Early Intervention program and set up evals with them and other medical testing so by the time I got the official diagnosis he was already in therapy. It has only been 10 months since his diagnosis and he is still delayed but man what a difference, he eats, is talking. I knew that if we worked real hard with him he had a good chance. Dont wait, get the therapy started now as much as you can get, even if you dont have the diagnosis you can still get therapy because of the delays.
Hang in there and keep us posted.
Kim
Why is it essential for us to come out, when inside are the same giants, and challenges as the outside. I understand you are concerned parents, but try to understand me.Wow! Thanks for all the great replies. I am trying to take the first bit of advice to heart.....'stop & breathe.' I think sometimes it just all feels so overwhelming. We're still working to get an eval somewhere but he is signed up to start o.t. and speech therapy starting next week already. So that's at least something.
I so appreciate all the advice you're giving me. I've been so impressed with how quickly people are willing to help who have been there before.
Ditto on all that flip said. Sometimes, it's not until someone points it out toMy wife & I are scared that our 23 month old son may have autism. We've seen his pediatrician, gone to an o.t. & speech therapist and now the autism center at the Univ. of MN they're recommending us to go to is saying there is a waiting list of 8 months to a year. We can't wait that long!
In the meantime we feel like our little boy is slipping away more day by day. We honestly didn't even notice anything a few weeks ago. My parents told us they were noticing he seemed to be behind in certain areas and maybe we just didn't notice because we see him every day. Now we're noticing lots of stuff (no eye contact, doesn't respond to his name, doesn't point, doesn't say much, etc.). Even just within the last week or so he seems to be paying less and less attention to us and doesn't seem to be into the stuff he used to really be into like looking at his little books.
Is there any hope? If your kid starts slipping, can they ever be brought back? I'm really worried about my wife. She's really taking this hard and seems to be giving in to despair.
[/quote]Definately call Early Intervention and request an evaluation. Where I live, we have Birth to Three. Both of my boys were evaluated within a couple of weeks of my call, and they almost immediately started receiving speech and occupational therapy services because of their delays. You do not need a diagnosis to receive these services.
Your son is very young, and you're getting him help early. Of course there is hope.
Best wishes to you and your family.
I agree and concur with you, Miss WMomof2, I just hope it is not invasive and painful. I pray that.[QUOTE=Serge165]I agree and concur with you, Miss WMomof2, I just hope it is not invasive and painful. I pray that. [/QUOTE]
Our therapies were all play based. Definately not invasive or painful - Yikes!
Welcome to the board!
Lanem Jemwel and Many thanks, WIMomOf2, it is appreciated. I am starting to show my age already! Thank you for the reassurance, I need it from time to time, so that I can dance and allow the old paradime and its teachings to pass over me, as the dragon inmy poetry did over Mikaela's head and it was no more :DMy wife & I are scared that our 23 month old son may have autism. We've seen his pediatrician, gone to an o.t. & speech therapist and now the autism center at the Univ. of MN they're recommending us to go to is saying there is a waiting list of 8 months to a year. We can't wait that long!
In the meantime we feel like our little boy is slipping away more day by day. We honestly didn't even notice anything a few weeks ago. My parents told us they were noticing he seemed to be behind in certain areas and maybe we just didn't notice because we see him every day. Now we're noticing lots of stuff (no eye contact, doesn't respond to his name, doesn't point, doesn't say much, etc.). Even just within the last week or so he seems to be paying less and less attention to us and doesn't seem to be into the stuff he used to really be into like looking at his little books.
Is there any hope? If your kid starts slipping, can they ever be brought back? I'm really worried about my wife. She's really taking this hard and seems to be giving in to despair.
Okay, slow down and breathe. You do mention some red flags and you are right to start services. My son was diagnosed shortly after his 2nd birthday. Many places do have a long wait list like you are mentioning.
I would also contact Early Intervention in your county to do an evaluation. From the delays you mention, it sounds he would qualify. A diagnosis isn't the most important thing immediately. Though it may help you obtain services in some cases.
Start looking at the different models of therapy out there. A good one to start with to help get into your child's world is Floortime. We also do a Verbal Behavior/ABA program for my 3 1/2 year old son and he has made tremendous progress. He is a different child now and a see a bright future for him.
Yes, there is hope and the fact you are addressing this early helps a great deal.
http://www.ipan-infant-autism.org/
Thanks again everybody. We had a much better day today. I do think it helped to just relax and breathe a bit. I had a great chat with someone at the U of M clinic and got a good idea of what we need to be doing. She suggested getting on the waiting lists at some of the places that do ABA so that we'll be that much further along if we end up needing that. I also put in a call to the Early Intervention in our county.
Any of you Minnesota-ites hear anything about the Alexander Center in Eden Prairie? So far they seem to be the ones that could get us in for a diagnosis the quickest. The U of M did say that since our little guy is so young we could likely get him in much quicker than the 8 months to a year they were originally saying.
I know it's still a long road ahead of us, but it just felt good today to start learning more about the resources available to us. Plus our little guy seemed much more interactive tonight. I don't doubt that all of our anxiety hasn't been helping him either. It does seem that when we just breathe and take things one step at a time, everyone does so much better.
I so appreciate everything you have all written. It's actually overwhelming to know that you are all so willing to help. Perhaps someday I'll be doing the same thing for someone else!
Oh Thank you! Dr. Voigt at Mayo recommended the Alexander Center and I couldn't remember the name of it! But he recommended a specific dev ped and I will probably have to call him to remember. It's hard to get hold of him so don't wait for me. But, he had rave things to say about them - and I really like Dr. Voigt! I would try to get in there if you can...jcullen--you sound like you are on the right track! Your child is lucky to have you as parents. [quote]jcullen--you sound like you are on the right track! Your child is lucky to have you as parents.[/quote]Um, anyone think that we all who live in Minnesota should get together sometime? There seems to be a lot of us!
I forgot about the Autism Society. I kind of took a break from autism this summer (besides coming on this board). Ds had a great summer, seeming very NT for the most part. Now school is here and reality is hitting home. It's not too bad - but I can't ignore it either. Not that I was totally ignoring his autism this summer - we just didn't do PT, OT, or any other kind of therapy. Did horseback-riding, swim lessons and focused a lot on gross motor skills and play skills by playing and interacting tons with the twins. To be honest, I think that helped more than doing all the intensive therapy. My ds LOVES the twins and any time he did something inappropriate, they called him on it. I would explain to him further why he should or should not do something. Then I would emphasize that if he did the same thing again, the twins might not want to play with him again. That alone helped him learn more appropriate behaviors than anything else. God help me when they move (which won't be for at least 2 years, but we know they plan on moving closer to family in the next 5 years
Anyway, about the Autism Society - there are support groups listed on their website as well. Get hooked up with people on there. Other parents are often your best resource to find out who to see and who NOT to see.
Good luck and you can PM me too if you have any questions.
We live in the Minnesota area. You can call the Lovvas center --a great ABA program. I wished we started when my son was 2 years. Iam not sure if they will need a formal evaluation - call and see their requirements.
See if your Pedi can write an Rx to start speech and PT. Check with the Autism Society -- on their home page they have areally good provider list. If you have problems finding it let me know. I have kids crawling on me right now:)
Hi,
We're in Minnesota too. Like mentioned before, call 348-tots ASAP. That at least gets you started. After that we researched and decided on an ABA program - the provider of our ABA was able to recommend different places to get a diagnosis before starting services. Get on a list for ABA now, (Life Midwest, Behavioral Dimensions and Minnesota Early Autism Project are a few) even if you change your mind later. Also, St. David's might be able to offer a day program (similar to Fraser). I found theirs to be more impressive than Fraser's. My best advice is get on waiting lists now. Double list w/ABA and Fraser, St. David's, etc. Some of these places actually get you in quicker the younger your child is...
Where are you in MN? We're in Mpls. and the 348-tots people got my daughter into services at school very quickly. We transistioned out of it once our ABA was set up. I have found ABA to be very beneficial, but every child is different and there are different philosphies out there.
We've gone many places for evals, U of M being my favorite, so stay on the waiting list even if you get an eval somewhere else before that.
Lastly, like everyone said, breath...it does get so much better. My dd was diagnosed a 1-1/2 years ago(age 2 at diagnosis) and now that we've relaxed, we enjoy her so much more! She has such a different way of looking at the world and I can't imagine her being any other way. There is so much hope and many gains are made through early intervention. You can also PM me.
Ann
We had a 8 mos. waiting list too and I looked for a dev. pediatrician that was private..he cost us $$ but we got her in within 2 weeks to be diagnosed and a ABA program started right away~she is totally mainstreamed in 1rst. grade with no supports and doing amazing:) Early intervention makes all the difference..do all you can to become your child's biggest reinforcer and try to engage him at all hours as humanly possible. Use rewards and motivators such as swinging, bubbles, cheers, mini mm's..whatever it takes to get him to look at you and heavily rewards all his attempts to engage you:) It is a hard road and long but now my dd doesnt need anything other than encouraging peer play..she is perfectly fine learning with peers and very smart:) Good luck!Serge -- Just wanted to say that just as it is impossible to describe "red" to someone who is colorblind, so it is impossible to describe why one needs to be "drawn out" to someone who is on the autism spectrum. If you are now 17.5 years old, you KNOW that you have had a rough time in life. The truth is that 15 years ago, when you were this child's age, there were far fewer acceptable interventions that could have helped you "see" the social negatives of autism. Of course, these are considered "negatives" only if you WANT to be accepted into the neurotypical world. Just as some deaf people do not want to hear or speak, some autistic adults do not want to lead their lives in a way that will make them acceptable to the neurotypical population. Although you are not yet an adult, you are close. So my guess is that your "take" on autism is what it will always be. Those of us who are neurotypical parents, by and large, do not want our children to live lives outside of the neurotypical world. We want them to be accepted within a larger circle. For that to happen, social skills MUST be learned. You may choose to reject social skills and that is your decision, but most of us parent on the Board WANT our socially "color-blind" kids to at least recognize the social equivalent of "red." That is why we seek social skills therapy for them. Not because WE don't love them just as they are, but because the LARGER WORLD will not. And even our strong, strong love for our children won't change that. Ever.
jcullen -- I am the parent of a son who is 16.5 years old. He was about your son's age when we discovered "something" was wrong. He eventually got two diagnoses -- PDD-NOS and moderate hearing impairment (he's worn hearing aids since before age 3). I KNOW how heart-breaking this is. But, of course, there is hope. My STRONG recommendation to you is to seek out EDUCATIONAL intervention. Get what you can thru EI, get a full-multidisciplinary ed eval thru your school district in a few month, as your child is approaching age 3. Spend your own money on getting research-based educational interventions privately, too. ABA is the one that is shown to get little guys off to a good start. VB, a speech approach based on ABA, is excellent, too. Learn what you can about Sensory Integration Dysfunction. Get an ABR (eeg for hearing) to make SURE his hearing is 100% intact. Beyond that, get on HIS wavelength as much as you and your family can. Expose him to the outside world. Learn the behavioral techniques that will help you with all of this. And come here to talk to us. We're all in this together.You've already gotten wonderful advice, I just wanted to say welcome to the board and please encourage your wife to drop by too.