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In need of any information/advice please (new member) long UPDATE

Posted by on Jul. 26, 2013 at 12:57 AM
  • 18 Replies

Today I took my DS 6 yr. old to the dr. to check if he is developing normally since his kindergarten teacher has been noticing he can't communicate well or socializes well either and more He is going to have to repeat kindergarten this year :(.He then stated that he wouldn't be surprised if my DS had autism. I felt like my whole body just heavy. His Dr. stated that there is not much he could do for that and that i was pretty much on my own. To research on the internet more info on autism and he gave me a questionaire to answer to see how many symptoms he has of autism. I filled it out there are a lot of signs that he does have it.  A little background story He lost his speech at age 2-2 1/2 yrs. I brushed it off cause him being my first born I thought maybe it's normal. My DH & I had feelings all this time but his dr. always said he doubted that there was anything wrong. I trusted the DR. Now I feel horrible for missing the signs regardless of the dr. saying he doubted it until today 4 yrs. later. I feel like a failure, I don't know what to do, Where to go to get him help, overwhelmed , sad just everything imaginable. I dont know even where to start to get him help or anything? I researched the internet and needless to say it's overwhelming & didn't get anywhere with that. Any information, advice would be greatly appreciated!  

Thank you in Advance! 



Well I was looking pretty much day & night & made an appt with a different doctor. we are switching drs. They sounded really nice & understanding when I told them what had happend with the other dr. & gave me an appt. for tomorrow! I am happy because they seemed like someone really listened to me finally after all these years. So they are going to see him tomorrow & give us a second opinion then reffer us in the right direction. hopefully this dr. is right for my family & i won't have to go searching for another. 

I want to thank each and everyone of you mommys that took the time to help me out with any information they had about this & pointed me to the right direction when my Dr. judt gave me and my child the cold shoulder... I know it is a long road ahead but I am a little hopeful now that We will most likely finally get the help we need for my DS.  Although I'm still going through a lot of emotions & since I really don't have anyone to talk to about this you guys really made me feel a little at ease. It is really comforting to know I am not the only one going through this. We don't know of anyone that has gone through this personally.  

Thank you fro mthe bottom of my heart =)

by on Jul. 26, 2013 at 12:57 AM
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Replies (1-10):
mypbandj
by Jen on Jul. 26, 2013 at 1:18 AM
Well first of all, there is a LOT you can do. Don't feel bad at all. This is hard. I have a son on the spectrum and until he was 5, I kept making excuses like, he's only 2. He's only 3. He's only 4. Now I have another son and I'm back in the same boat!!!

What I'd do next, if I were you, would be to get a full eval for your son. Go to a neuropsychologist or a developmental pediatrician or an autism clinic. Then get him an eval by the school. There are many therapies and services that you can get for him.
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mommyj3559
by on Jul. 26, 2013 at 1:23 AM

Thank you so much :) I'll definately look for a neuropsychologist,developmental pediatrician or autism clinic

Quoting mypbandj:

Well first of all, there is a LOT you can do. Don't feel bad at all. This is hard. I have a son on the spectrum and until he was 5, I kept making excuses like, he's only 2. He's only 3. He's only 4. Now I have another son and I'm back in the same boat!!!

What I'd do next, if I were you, would be to get a full eval for your son. Go to a neuropsychologist or a developmental pediatrician or an autism clinic. Then get him an eval by the school. There are many therapies and services that you can get for him.


ineedcoffeemom
by Brittaney on Jul. 26, 2013 at 1:28 AM
1 mom liked this

You need to have the school evaluate him for special ed services. After the evaluation, you'll help the school create an iep (individualized education plan) that will help you decide what he needs in order to be successful, like getting occupational or speech therapy, or having an aid with him in class. I know other moms on here can give you more info. I'll won't do an iep for another year as my dd is only 2 and I've already had her formally dxed through a dev ped. You can go that route but sometimes it takes a long time to get into one and you don't have to do that in order to get services thru the school for your son.

HippoCat
by Hadley on Jul. 26, 2013 at 3:07 AM
I can relate to your pain so much. It is such a horrifying feeling thinking / being told that there is something wrong with your child and not knowing where to go. I was in your exact spot 2 years ago. My daycare provider just told me to come pick up my son, that he was the weirdest kid she had ever met, nobody wanted to play with him and he was totally in his own world, that she thought he had autism and not to bring him back :(. Where do you go from there?... The pediatrician right. Talked to the nurse and they weren't concerned. He had met all of his milestones so nothing to be worried about. Looking back, they weren't worried because they don't know enough about it- it is not their specialty and they just don't know. My pediatrician is wonderful, he just doesn't know about autism. He did eventually say we needed to see a developmental pediatrician, but did not have a recommendation and I still felt in the dark.

There are resources available to you. Check with your school district and see what is available to you. My son is only 3 so he receives early intervention services through the public school system. I think it is called special education if they are older. I believe most or maybe all states have this. There is a process that you have to go through to see if your child is eligible and it sucks, but it is worth it. If they are eligible then you can start receiving services to help (I repeat...help) your child. Through the school district we receive a teacher (who is kind of in charge of coordinating everything and meets with him weekly), a speech therapist, an occupational therapist (OT) and recently and assistant to help him with his play skills for 2 hours a week! This is all paid for with tax money so no out of pocket expense to you. We also use a private OT and speech therapist.

A book that I found incredibly helpful is called "Could it be Autism? A Parents Guide..." By Nancy Wiseman. She is the founder of the website www.firstsigns.org (a very good and informative website) She basically gives a breakdown of what is (or should be) available to you as well as an explanation of types of therapies. Both the website and the book to over the "red flags" or shall I say the dreaded "red flags" that made no sense to me. Yes, my son had them- many more than I initially realized, but I just thought "so what, he is just a kid and all kids do this stuff." They help explain why the red flags are significant. Like, loss of language (which my son had) could mean that they don't understand that language is social (basically that using language can benefit them) or no pointing could signify that they don't really care to share what they are experiencing with you and that they are just content to experience it with themselves.

Another good website is www.autismspeaks.org. They have a kit called "First 100 Days" that will help get you on the right track. I looked at so many websites and checked out so many books from the library, but if they made me feel like a bad person or too overwhelmed I put them down. It is completely overwhelming and exhausting, but also interesting and helpful because after a while you start to feel hope and start see the difference in your child- the glimmer in their eye or a true moment of connection.

I hope I haven't overwhelmed you. I know your pain. I was so confused for so long and I cried so much. That stupid day care provider I had just confirmed a big fear that I had about my son. She did it in a horrible way, but I already knew he had it, I just didn't (or couldn't) believe that it was my world.

Good luck and please, please let me know if you have any questions. It feels like an I paved road, but it is more paved than you think. You just have to find the right people. You are a good Mom and believe it through and through!
Gloria1025
by Bronze Member on Jul. 26, 2013 at 5:38 AM

The other Ladies have given you great advice.  The only other thing I would add is that when you request that the school evaluate him, do it in writing.  If it is not in writing, they don't have the same timeline obligation.  Hugs!  I know this is hard but you can do it.  Everyone here has a lot of experience and are very helpful so please keep posting questions 

lucasmadre
by Kari on Jul. 26, 2013 at 6:22 AM

He is still young, there is plenty you can do. Relax. You are a good mom and you will find him the help he needs. This is a great place to start. 

The first thing I would do is dump that doctor and find a good one who can help you, someone who has experience with kids on the spectrum of autism. You need to have him tested and get a real diagnosis then you can go from there. You will find that once you start there are so many resources out there and people who will help. There is a special education staff at your school and they are often a good resource for things like doctors and testing. It might be a good place to start. Go to the top, the head of special ed was wonderful at our school and she gave me so much information. 

You are going to feel every emotion in the book, it is a bit of a roller coaster ride at first ( I cried all the time) but we have all been through it here so feel free to be open about your feelings. I swear and promise it will get better. Once you have a plan in place to get your son what he needs you will start to feel more in control. 

Remember he is still your same little boy, nothing has changed about that. He just needs a little help along the way. A teacher told me once- every child is like a lock, it is our job to find their key. You will find his key and we are here to help. Welcome...XO

TheJerseyGirl
by Michele on Jul. 26, 2013 at 6:44 AM

 

 

 

 

 

 

 

 

 

first of all, Change doctors. Him telling you there's nothing more to do without at least directing you to someone who CAN help, is pretty pitiful. Get a correct evaluation from a doctor specializing in autism and go from there. Good luck, momma!

TheJerseyGirl
by Michele on Jul. 26, 2013 at 6:44 AM

 And welcome to the group!!!   =)

JTMOM422
by Brenda on Jul. 26, 2013 at 9:31 AM

You are not a failure. We have no reason not to trust our doctors. If they tell us something we expect it to be true. I mean these are the people who spent 8 years if not more in school studying the human body. 

I would go to Autism speaks website and pull up local pychiatrists in your area. Then start making phone calls to these places. There might be waiting lists. I would also ask your doctor for a referral to a psychiatrist that may do these type of testings.

You said your son is in school. Ask the school If they will test him so he can qualify for an IEP. Individualized Education Program. This will help him get the help he needs in school. The school can not give you a medical dx but they can give you and Educational dx. At least if the school administers the test and they see red flags then they can come up with a plan to help him at school. Just remember he may pass the test for Autism at the school but that does not mean he does not have ASD. I would still get him tested by a psychiatrist. 

emarin77
by Silver Member on Jul. 26, 2013 at 1:53 PM

We all make mistakes but now you know to step up and take care of the problem. Send your son to a child psychologist to be diagnosed.  This psychologist needs to have experience diagnosing children with Autism.  Once a child's ability to communicate dissipates, there is a red flag for Autism.

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