waiting for diagnosis

[deleted account] ( 37 moms have responded )

DC is 28 months and displaying atypical behaviors. A state psychologist observed him and said he appears to be on the spectrum. We are on a waiting list for an extensive evaluation. This is just so painful waiting. Receiving some help from state services but feel like we were done a disservice when they didn't raise any flags to me. Apparently last fall they saw red flags and didn't think to tell me. Autism wast not in my head at all. I just thought it was a language delay. The teacher coming out never mentioned it to me either after months and months. My mother in law had to knock it into me. Feeling helpless and don't know what to do for him.

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Aimee - posted on 05/18/2010

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Pine Apple, it sounds like you're kind of starting out like we did with our son. He was originally given an autism diagnosis after a 1 hr appt, then after a more extensive evaluation it was settled on as PDD-nos. So, on the Spectrum but not autism per se. He was about 30-32 months when he was diagnosed, and it was even put to us that because they're so young when diagnosed, some eventually "outgrow" the diagnosis, so to speak. My son started school at age 3 in a special needs class, and we have been blessed with caring teachers ever since. That's not to say we haven't had a lot of bumps in the road, but he's about to finish Kindergarten (now age 6) and is doing well. Early intervention makes a world of difference. My son was/is very independent...stay vigilant, you may have to "save" him from himself! We had to install keyed deadbolts to keep our boy in the house when he felt he needed to go explore the neighborhood, and have been in the ER getting stitches when he decided he wanted a piece of green pepper and tried to cut it when I was busy in another room with his sister. But on the flip side, with the right teachers and support people around him, he's made a lot of progress! He's even made friends with the boy next door and wants to go over to play with him. ASD is certainly something that you can learn to help him manage...get the evaluations, get the services that he needs, and take each day as it comes. Some will be good, some will be bad...some will be really bad...and then some will be really, really good, too. One thing that makes a HUGE difference in our son is getting enough sleep. He has better days when he's sleeping enough...how is DC sleeping?

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Leanne - posted on 05/27/2010

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my son has autism and it took a year of assessment to get a diagnosis. i had been in denial until i realised i had to do something for his sake aswell as our family. i went to the health visitor and told her my osn had autism which began the assessment process. morgan was 2 at the time and is now nearly 6. his behaviour has improved, he has extra support at school and he is no longer the unhappy little soul he once was. the helplessness only goes when you are actively doing something to help and even then there are days when it all seems too difficult. there is no treatment but strong rules and a zero tolerance policy for bad behaviour have certainly worked for my son, (though the way in which we respond to his bad days is not as you would with a non autistic child) make sure your expectations of him are realistic for a child with his difficulties and try to do activities where he can have freedom for a while. my son loves spending time at the beach where he can run and dig without having to ask permission for things all the time or be restricted. The main thing is IT DOES GET EASIER!!!! unconditional love and cuddles can go a long way and telling other people he has autism makes a huge difference to how they respond to him. It sounds as though your mother in law could be a great help as she is obviously very concerned too. Have a good cry, mourn for the way things could have been and then see your beautiful little boy for who he really is. full of life and energy, just needing a little extra help with some things. Good luck! Leanne x

Ann - posted on 05/26/2010

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I have a friend with a little boy that just turned two and he also is on the autism spectrum. He has language issues, rocking , and texture problems. He was delayed and had therapy coming to the home so she has always been aware that things were going on. She is just helping him be all he can be(he is super smart) and taking things as they come. That's about all any of us can do.

Cheri - posted on 05/26/2010

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Also, Dr. Laskonis is going to be doing a seminar entitled: an Evening with Dr. Lee - Autism/Asperger's - Missing Links. If you or anyone you know is interested, also please contact me. I am new to this site so I don't know what I should or should not provide for contact information.

Cheri - posted on 05/26/2010

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There is much work being done behind the scenes. I am working with a natural doctor who has had amazing results with autism and has 2 modalities she uses which seem to fast-forward her results in half the time it normally takes. She works with a specific water that speeds up the detoxing process and provides the perfect delivery system for nutrients. She also uses a product that helps the cells talk to each other; 2 missing links in any process. Her recent work is available. I would be glad to put you in touch with her. I am in awe of her work and results.

[deleted account]

You will have bad days then he will do/say something so great it blows you away and you will be OK again!!!

[deleted account]

My son's sensory problems were not obvious to me but to an OT,yes. He needs deep pressure to help him focus @ school so he wears a weighted compression vest. would not have heard of it x from an OT.

[deleted account]

Early intervention is the key,which is what you are doing. When my 3yo was diagnosed w/ASD one yr ago,we were devastated. Accept him as he is,realize he will be the person he is meant to be and not what I want him to be. He is in special ed preschool now and is making slow steady progress. Use all resources/therapies you can. hang in there!

Letitia - posted on 05/22/2010

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I'm in sort of the same state. My son is 6 and has been in school since he was 3. They wanted to dx him with pdd then but I chose not to because it did not change any of the treatment visits I was already doing. I am waiting for a second opinion with a new doctor. He started getting all of these new fears of the bathroom and things that aren't there that are freaking me out.

What you can do is talk to him as much as possilbe telling him what you are doing. Read to him alot to expose him to new words, allow time between transitions to other activities to avoid a meltdown. Give him must structure, constistencies helps alot. You can get him in speech and/or occupational therapy as young as possible will help. Just remember, you did not cause this but you can help him by being the best advocate for him. Demand services, get suggestions to follow through at home,. I would start thinking of enrolling him in special needs preschool. It starts when he is three. 90% of kids brains develop before the age of 5!! My son would be way worse than if I had not put in preschool. They will learn socialization and language skills. When he first started he did not know to socialize or talk and now he is a little charmer who does not shut up!

Above all just keep your head up. Beware of what you read about autism on the internet. I personally do not believe Autism can be "cured." It is treatable and the sooner the better.

Carol - posted on 05/22/2010

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ECI is Early Childhood Intervention. Maybe I was just very lucky with the case worker we had. She made everything she did so easy. There were even things she noticed that I had thought were just normal so hadn't mentioned. We see a psychologist who specializes in ASD/ADD/ADHD. The school here didn't want to give him what he needed either so they claimed his doctor didn't make a correct diagnosis. When this happens they are required to send you to another psychologist (which they have to pay for). I was given a list of doctors to choose from. I called our dr. and asked him which one would be the best choice. She confirmed the diagnosis and the school then had no choice. Good luck to both of you.

Amy - posted on 05/22/2010

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How did you get the doctor you seen. I have 3 kids that have ASD but I haven't really gotten a doctor to come out and put it in writing. The school don't want to give the what they need.

Christina - posted on 05/22/2010

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I just wanted to wish you luck. It can be very difficult getting a diagnosis from early intervention besides a generic developmental delays, speech delays, low muscle tone ect. My son entered early intervention at 15 months for lack of speech, not walking (or crawling), hand flapping ect. No one would tell me he was on the spectrum even though I asked outright. I didnt get a diagnosis until I took him to a pediatric neurologist who at first diagnosed my son PDD-NOS and then Aspergers. He told me that that dont usually diagnosis Aspergers before they are school age. (my son is now 5).
If there is ANY concerns, write them down as you think of them. The E.I. meetings can be overwhelming and you can forget to mention things that are important to you. Over the years my son has had OT, PT, speech therapy, behavior therapy, feeding therapy, social skills groups, a special education therapist in our home and a siet in his preschool. Stick with it and advocate for your child. My son who is now in PRE-K was just recently discharged from Early Intervention with just speech for articulation in Kindergarden and a social skills group in school as well. You wouldnt know that anything was different about my son except that he might seem immature for his age. He is smart, social and very affectionate. = )

Carol - posted on 05/21/2010

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Try contacting Early Childhood Intervention in your area. It has been a while since we used them so I don't remember what the age limit is. They will come to your home and evaluate your child. I knew because of behaviors, my grandson was ASD but because he was so young (probably less than a year) no one would evaluate him. He was already getting ECI so the trained case worker agreed to test him. What we thought were just hand gestures, she told us, was actually international sign language (how or where he learned it we have no idea), the babbling was actually him talking in a foreign language (I know that sounds very far fetched but someone who spoke the language actually understood what he was saying!). The way I dealt with eye contact was to start making him look at my nose while I was talking to him. This actually worked since he didn't have to look me in the eye. I was eventually able to move his gaze up my nose and into my eyes. He is 10 now and over the years I have noticed that if he is not looking in my eyes, he is not hearing what I am saying. I still have to remind him to look into my eyes and it takes several reminders but he does it. Some days I feel like he is making so much progress and others I feel like he is regressing. Those are actually HIS good and bad days if you think about it. On the bad days, redirection sometimes works and can change the whole rest of the day. I know it's hard but try to remember, God decided YOU were the best guardian for this angel.

Michelle - posted on 05/20/2010

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mate, i'm sure all of us have times when we feel like we're not up to it....so don't feel bad about that! we have a 6 yr old asd son, and you know my gut instinct when i read your first post was just love him....these kids are sooo unique, funny and quirky....i think we're lucky that we more than anyone else get to see that side of them. be prepared to fight fight fight....you will find that as he grows up, there'll be times where you'll have to be 'that parent'...the difficult one but you are the best thing your boy has going for him at this point. susan is absolutely right...early intervention makes a world of difference...we also have a 13 yr old who didn't get diagnosed til she was 7...i wish i'd had the balls to push more then, it may have been a little less rocky than what it has been...our son was diagnosed just after 2 so it has been a totally different story with him...but either way you can do this. just stay flexible...you don't know what kind of a day its gonna be til he gets up out of bed...well thats how it is for us anyway and we kinda just go from there....!you will find as he gets older you will just learn to communicate with him in his way....hard sometimes but don't beat yourself up on the crappy days....xoxo!

Susan - posted on 05/20/2010

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Two things. It's a gift that you're getting a pretty early diagnosis. My son's have Asperger's and weren't diagnosed until they were in grade school. We lost *all* that early intervention time.

Second, I personally know three children (now in their teens) who were nonverbal and quite autistic when they were toddlers/preschoolers. They received intensive intervention when they were little and it helped them so much. They're all considered to have Asperger's now. They all talk with normal vocabularies and, in two of the three cases, you wouldn't know they're on the spectrum if you just met them casually.

It's impossible to say how much any one child will change over the years, but there are many cases where early intervention makes a *huge* difference.

Also, go easy on yourself. When you first get this diagnosis (even if you thought you knew it was coming) it can hit you like a freight train. When the diagnosis is a complete surprise, it's even worse. The image you've had of your child's future changes, and you even pour over things from the past and feel guilty for not noticing sooner. So many of us go through it, and it's really emotionally draining. It's a lot like grieving, and, just like grieving, you need to give yourself time to adjust.

Hugs. Come back here when you need help. There are a lot of excellent, experienced, moms here who will reach back when you reach out.

Suzanne - posted on 05/20/2010

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hey.. i saw that you marked my comment about my 11yr old step son as encouraging! thk you so very much! Listen, I went thru this with my sister a few yrs back.. they were giving my nephew Jake every diagnosis known to man BUT being on the spectrum.. I kept sending her materials I found online & finally came right out and said that I think he is textbook Asperger's and 6mos later ... I was right! He now has a shadow at school and takes Respiradol and Tenex for ADHD & social anxiety. He is doing sooo well!~ He's like a whole new kid now! As far as services are concerned.. pls be advised.. there are tons available to you from the state.. however, they will not come right out and "offer" them to you unfortunately.. you HAVE to do your own research and request them! It can be a headache but every moment of your time spent talking with people (whether it be on here or on the phone with diff state departments) will be way worth it! To help you jump start the process though I would like to reccomend to you that you find a Developmental Pediatrician rather than a plain old regular one as the dev ones specialize in these kinda things! Also, Take him to see a Neurologist and ask to be assigned a Behavioral Specialist as well! Depending on the where he falls on the spectrum a shadown might be a good idea as well.. once he enters theschool age that is.. Good luck and pls let me know if there is anything else I can do! We can chat on facebook anytime during the day as I am a stay at home mother.. just look me up and send me a friend request : Suzanne Leveque.. God Bless!

Corinne - posted on 05/19/2010

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You hit it right on the head Katey. These kids are wonderful people!!
We have so much to learn from them :)

Katey - posted on 05/19/2010

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The diagnosis wait is a pain, but keep in mind no matter what the results he is still a wonderful little boy. He just has a different way of comunicating and doing things-as well as they tend to get interested in things alot of people miss. I love how my sons find wonder in so many things that others miss!

Corinne - posted on 05/19/2010

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When my son was diagnosed almost 3 years ago. I felt overwhelmed, and alone. Take your time, and take a deep breath. You will find help through early intervention, then just take it from there. Good for you for reaching out to us. Keep it up.

Kathryn - posted on 05/19/2010

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Hi there, I haven't read all the responses on here but i would like to say..welcome to the wonderful world of ASD! My daughter is seven years old and was diagnosed less than 6 months ago. I went through hell trying to get answers, alarm bells rang with me at more or less birth..no one would listen..it was all in my head! i battled on and when i got the answers, i found out that I'd natuarly dealt with Rach's bahaviour in the right way, trust your instincts and don't be afraid. some of the things i do (like body slamming her) seem strange to others..but they don't have the privalage of stepping into another world like we do..sometimes its hard..but I tell Raachel that she's autistic, autistic is different.and different is good!
All my love.
Kate
xxx

[deleted account]

I don't know where on the spectrum he would fall. Some where mild I would assume. How many hours would you recommend of speech therapy per week? I really think once the communication part opens up, it will make a difference.

Lauri - posted on 05/19/2010

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My son is 7, and was diagnosed with Aspergers last November - although we started noticing something was wrong about age 3. To get what we needed out of the public school system, we had to get a developmental pediatrician to do a diagnosis, which we then presented to the school. They've been jumping through hoops ever since. We've managed to get speech therapy and OT, small class environment and separate testing environment. Going outside the system is expensive, but to us, worth every penny. Good luck, and breathe deeply!

Desire - posted on 05/19/2010

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I agree also...Absorb yourself with information, and today fortunately there is an abundance of information...Children on the Spectrum thrive with Extremely Structured environment...kind of a mundane schedule, but they need the stability and the consistency...It helps them feel safe. Children on the Spectrum need to have a consistant daily routine...then same schedule every day...every week. The slightest change will throw them completely off...So if there is any kind of therapy appointments, OT....try to schedule them on the same day every week...so they get used it...it then becomes second nature..There are newsletters on the web you can sign up for, parenting tips with kids on the Spectrum...so much is out there, Like Karen said...Be the best advocate for your child..Follow your instincts, they're usually right...Hope this helps some...Desire

[deleted account]

I'm glad to hear how well your son is doing. When my brother was younger he would be like that venturing off and getting into things. He's now a family man and a doctor.

[deleted account]

Hi Aimee. Thanks for the post. He sleeps through the night and always been good about it. Although, he did go through a spell recently where he was skipping naps. We ve been a little more structured with nap time and think it did help. It's funny you mentioned that because I was reading today how lack of melatonin and autism is linked.

[deleted account]

Thanks Pamela. Yes please add me. I am new here but like this format.
Your son sounds wonderful. He has so many great qualities. I would focus on them. I mean great at eye contact, enjoying others...sounds like he is steps away from talking. As long as they are happy, that is what matters. Also, the psychologist said to me, there are many people out there, married, professors, engineers, etc that would have been diagnosed with autism if they were born now when we are so aware of it.
I guess I get depressed about the talking thing. If I know my son will talk, I think my anxiety would go away, a bit. If he gestured more to indicate he is capable of communicating and didn't have the other atypical behaviors (i.e.occassional toe-walking, not waving hello/bye), I wouldn't be freaking about the delayed speech. I could just say he is a late talker.
Tonight was really positive. He was babbling, playing and making great eye contact with dad and me. BTW our boys are a few days apart, he's 15-1-08.

Pamela - posted on 05/18/2010

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Hi Pine apple Im with you!! My son Cameron Born 12 - JAN - 08 ( so 28 Months ) is going through the same thing. waiting for diagnosis and attending speech once a week.
Do you mind if I add you to my circle. I feel the same I have days where I think this is going to be okay hard work but we will get there and days like Today where I just can't seem to face it. He also has his good and bad days and now I watch him so closely and every day I seem to find a new sign to suggested he is on the spectrum. I think what helps me is my best friend just moved in with one of her friends that has a 4 year old on the spectrum and I really would have had no idea he was, he is a mild case and seems just to be a bit shy and reserved took along time to toilet train and needs help with his speech delay but all together a super kid.

My son like yours had always been super independent walked at 8 months and was off from there we just thought he preferred his own company. both my brother and brother in law and Grandfathers are the same so we thought it was just him .. he is extremely funny and very sensitive to people feelings. His issues are :
Toe walking ( only some times but seems to be getting worse).
Lack of speech he talks all the time but its mainly jibberish. He doesn't ask for anything and only recently learnt to point ( since the speech therapy he is now telling me he is thirsty and wants juice but he wont say he is hungry )
Just yesterday I notice his flapping ( well he sort of wiggles his fingers when he is thinking) ,
He will do everything himself if he wants a dvd on he wont come and get me to put it on he will open the draw take the dvd out put it in turn it to AV and sit up and watch it .
He wont follow 2 step instructions unless it is a habit for instance go out side and get the ball he wont do but open the fridge and get the milk is not a problem .
He plays with imagination ( pretends the broom is a horse and the vacuum cleaner is something to ride on. Plays with cars and planes as if they are cars and planes and makes the noises) he doesn't line things up. He does stack his blocks but if you nock it down he laughs and doesn’t want to put it back together.

He bites others if he feels they are in his space ( but touch wood this hasn’t happen for a while now).
Makes brilliant eye contact
Is very affectionate.
He sings a lot and get the words right even though it sounds very very babyish.
He does play with other kids and does seem to want to be included but he is a bit of a push over heheh ( for instance if there are loads of kids on trikes going around the play ground and he wants to join in he runs after them when one gets off he hops on but as soon as that kid comes back he hops off and lets them on)
He is very good at climbing and very fast at running he is up there with a 4 year old I would say.
He plays very well with his brother
Makes good eye contact and chats to him and he will chat back.
I know this is going to be hard and I think its just all hit me ( I have a cold and feel awful so it doesn’t help) it just doesn’t seem like its fair .. my husband said a great thing to me last night when we were talking he said he is Happy and he is healthy its not like he is dying .. and my mum told me to focus on everything he is good at. And he really is a brilliant little boy .. just seems to be wired differently to most kids.
He is mostly very gentle and kind and shares things he just has some quirks that we have to work on .. but we will get there .
Seems it all happened when I was about to start a new career but Im a mum and my boys are more important than money or a job so although this is going to be hard and some times draining we will take one day at the time and soon enough it will all fall into place and we wont know why we were so upset in the first place.
My son has a brilliant future he just needs a bit more help achieving it but we have both got in this game early.

Good luck and Please contact me any time to chat
Pamela

[deleted account]

I feel really overwhelmed today. I was upbeat yesterday thinking he'll go through therapies/intervention and eventually be mainstreamed at some point in school. But I am just super negative today. It is really hard. I feel like I am not up to the task.

[deleted account]

Hi Karen, hi Sheila... I was getting an hour of speech already. Nothing really has came from this. He eventually started imitating gestures in songs. He does not have sensory issues unless you count not answering to his name consistently. His red flags are not answering to his name, ignoring people, not making eye contact and his speech delay. So what do I do for this? He can hold eye contact during like song time and tickles. He is affectionate. He can follow directions. When he doesn't want to do something he gets irritated. Nothing too bad so it's hard to gauge if this is a typical 2 year old behavior. Also he doesn't really try to communicate non-verbally. He is independant. Too independant. What do I go after for these items? Does an OT help for this? Hoping Speech Pathologist starts coming regularly instead of special education teacher. Any more suggestions?

Sheila - posted on 05/18/2010

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While waiting for diagnosis, visit an OT who specializes in working with children on the spectrum/sensory issues. You do not need a diagnosis to start addressing behaviours that you are seeing.

A good OT can be your very best friend!

Read The Out of Sync Child. it is very parent friendly.

Set a goal. Do not get stuck!! It can be a starter goal...DC will....and then develop strategies on how to reach that goal.

At 28 months, time is on your side. Early intervention is best.

Sheila

Karen - posted on 05/18/2010

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It is SOOOOO Important for you to deal with the things your child is dealing with, stop bad behaviors if you can, grab all the reaserch and advice you can and lean on everyone you can for love and support; but parenting a child on the spectrum is SOOOOO much easier if you're taking one breath at a time and become a solid wall of parent advacate for your child. Don't wait for the medical field to do ANYTHING!! SO MUCH of the things that make life easier for your child will come from other parents and outside resorces. Gird yourself from and sift through ALL information because the one thing you can say about AS kids is they're all SO unique and prescious and A LOT of really GOOD information is online and in several good books.

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