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Old 06-02-2006, 02:07 PM   #1
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Canadiangal HB User
My world is falling apart - please help

Hi all,
My name is Nina and I am devastated. In fact I am crying as I write this. My 3 year old son needs to get an appoint. with a development pediatrician for a test to diagnose Autism Spectrum Disorder. I feel so overwhelmed and don't know where to turn. My son is a happy, social little boy. He does have a severe to moderate speech delay for receptive and expressive language. He has really improved since he turned 3 this Jan. He likes to rock and flap his arms. No other unusual behaviours. He loves to play with his brother. The therapist was concerned because he does not pay a lot of attention to others when he is playing and not a lot of direct eye contact. I do not really know what autism is and I am very ashamed. I have a 6 year old who does very well in kindergarten and I feel like a horrible mother. I do not know what to do but I just feel so bad right now. Can someone please shed some light on this. My son rarely has temper tantrums, loves to play and smile, he loves to cuddle and kiss. He is good with pretend play. His speech is that of a 2 to 2 1/2 year old. I just feel like the walls are closing in on me...

 
Old 06-02-2006, 02:35 PM   #2
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boysboysboys HB User
Re: My world is falling apart - please help

My heart goes out to you. I totally understand how you feel. It takes awhile for things to sink in when you hear the word "Autism". Autism is a neurological disorder that causes problems with communication and the sensory system. You are not a horrible mother and have done nothing wrong that caused your son to have delays. There are tons of theories as to what causes Autism, but nobody knows for sure. It is a very good sign that your son has the language skills of a 2-2.5 yr. old. It is also a good sign that he engages in pretend play. I would get him evaluated if I were you. If he does need help, there are a lot of therapies that are available and the sooner you start them the better. Things will get better for you with time. You need some time to grieve. This board has been very helpful to me and I bet it will be helpful to you too. Good Luck!

 
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Old 06-02-2006, 03:28 PM   #3
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Re: My world is falling apart - please help

Thanks for your kind words. They want my son to do a ADOS test. Can someone please tell me what this is - can I find a copy on the net?
I really hope he does not have this but I am very , very worried.

 
Old 06-02-2006, 04:57 PM   #4
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Re: My world is falling apart - please help

Hi,
I had never heard of the ADOS test, but I did a search and found it on the web. ADOS stands for Autism Diagnostic Observation Schedule. If you do a search you can find more info (the rules of this forum prevent me from listing a website for you).

 
Old 06-02-2006, 07:12 PM   #5
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9CatMom HB User
Re: My world is falling apart - please help

(((Nina)))

Good luck to you and your son! That he gets along well with his family, engages in pretend play, and is basically happy are all things in his favor.

 
Old 06-03-2006, 04:53 AM   #6
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Re: My world is falling apart - please help

Well, it is now Sat. morning and I did not sleep the whole night. In fact, I feel physically ill. Nothing will change the way I feel for my son or the love I have. I am so worried about him. He will start kindergarten in 2007 and I am worried. He has improved so much since his 3rd b-day in Jan. He is joyful and loves to play. BUT,
He likes to rock, flaps hands when excited, some limited eye contact when it should be consistent. They said his receptive and ecpressive lang. is severe to moderate.
I really feel alone. I do not want to wait 10 months. This is just very overwhelming for me...

 
Old 06-03-2006, 05:09 AM   #7
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Re: My world is falling apart - please help

Nina,
My son is 14 and carries the dx of autism. I know what you are going through. Please know these things.
*There is great hope today more than ever for the prognosis of our children.
* Nothing you did caused autism IF that is his final dx.
*If you are in the United States call your county Early Intervention team and ask for an evaluation. THey can do this free of charge. It is best to see a doctor who specializes in developement. It can be a long wait to see one and early intervention is vital.
*Make sure that you get a REALLY GOOD hearing evaluation done by an audiologist who does infants. THey can get results without the child having to respond in a certain way
* If you end up with the dx FIND A SUPPORT GROUP. Either in person or online
* There is a lot of information and treatments. YOu will have to decide what to do and what not to do. Listen to the experts then make a decision. Don't be afraid to change your focus.

all the best and I'll keep you in prayer

Susan

 
Old 06-03-2006, 06:09 AM   #8
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Re: My world is falling apart - please help

its not easy for most people to hear autism and think positive for their children's future. for my husband and i it was both crushing and the most uplifting thing we had heard in isaac's whole life. it crushed any idea that this was just a phase and that he would out grow how he acted and that he would suddenly become the most verbal kid on the block but it brought our world that was spinning out of control into sharp focus.

autism is not the end of the world. think about it this way, now you have a definate direction to go. now that there is an idea of what the problem is treatments can be refined so that your son can meet his full potential which what you are describing could be a heck of a lot! he sounds like he is very functional now, with the specialized treatment he may even lead a "normal" (whatever that is) life, hold a job, get married, have kids, yadda yadda yadda... well, my husband did he didnt even start talking until he was over 2 (talking at all that is) and now he cant shut up our son is different though and there is a question of MR as well. but he is happy, healthy, cute, and most of all my son! so i am proud of him no matter what he accomplishes in his life.

something else to consider as well... the autistic brain has 7 percent more storage capacity than the neurotypical (normal) brain so once it gets wired up right so that things work proper (through the specialized treatment) it has the potential to be a better brain. unfortunately i am sure that my son has filled his 7 percent with tricks and ways to get out of working and how to look cute while doing everything he is not suppose too

find a local support group that you can go to if you can... i found ours in the local news paper because our local hospital holds monthly meetings for several groups. look around i am sure there will be something because where i live is fairly rural and we have a fairly large group. an offline group can offer you more info and ideas on how to get local services and how to get through some of that redtape. they will have the inside good on what happening there. as well as being able to talk face to face with understanding people who have been in your shoes and survived. G-Luck!

 
Old 06-03-2006, 07:41 AM   #9
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Curious Nana HB User
Re: My world is falling apart - please help

Nina-

Most of us on these boards have walked your walk. For me, it is my precious grandson who was diagnosed over a year and a half ago. Drake sounds like he was even a bit more severe than your little guy, but he has come such a long way! For every story on these boards, you will find a variety of stories about what path we have each taken to find the help we wished for our children. Drake thrived with a combination of dietary changes, being evaluated for what vitamins, minerals, and amino acids his body needed, a strong developmental preschool program, lots of love, a magnetic mattress pad on his bed, speech therapy, and currently, we are working on sound therapy. If you were to poll every parent on this board, their "recipe" would be different, based on available interventions, what we have read, who we talked to, and what special ways the autism has manifested in our children.

I remember clearly the numbing grief that hit me when we first heard the word, but this will pass, because what is waiting to surface is that part of you that wants to do what you can for your little guy. Check out the thread for books that we have read and suggested if you want to get a start on finding out what types of treatments are out there. These boards have been so incredibly helpful in providing support and guidance along the way.

Even though I don't imagine you can envision it now, you WILL be sharing your success stories as well. Throw your guilt in the gargage, for it can only immobilize you, and it has NO PLACE in this diagnosis.

Best wishes to you as you start your journey.....

Nancy

Last edited by Curious Nana; 06-03-2006 at 07:43 AM.

 
Old 06-03-2006, 09:18 AM   #10
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Re: My world is falling apart - please help

I felt a crushing blow too, especially since we already had a baby girl with Down Syndrome. I felt like God had piled too much on my shoulders. My daughter was born 2 months premature and had Pulmonary Hypertension and heart defects. She was not expected to live. Not only did she live, but now at 15 months she is of normal size and weight, the heart defects (which included a leaky valve, murmur, enlargement, and two holes causing irregular pressures) have healed themselves. Her pulmonary hypertension, which was expected to continue on until she was at least 7 years of age and possibly for a lifetime has miraculously disappeared and yesterday she came off the oxygen. She's happy, sitting, crawling, playing, clapping her hands, and is just a complete joy. The doctors are very, very happy with her progress....and really amazed. They said she definately beat the odds.

During this time all my attention was focused on worrying about her and I didn't even know my son was sitting right next to me all along with Autism. I didn't even recognize it even though I had spent years working with adults with developmental disabilities and had even tutored an autistic student in college. Here my little boy was thought of as the "typical" kid that would grow up to look after his little sister and take care of her and what I didn't know is that the outlook for his future would soon be in question.

I absolutely REFUSE to sit around and sulk about it. I'm directing my energy toward doing every possible thing to launch them into having a full life with independence. My daughter is in an intensive early-intervention program and now my son is receiving help as well. I'm happier than I've ever been in my life because I know my children were given to me for a reason and that it's up to my husband and I to take this challenge and make the very best of it and try to see it in a positive light.

Get plugged in to a support system. For me the Down Syndrome Society was a lifesaver. I made friends that will last a lifetime. I'm in the process of connecting with the Autism Society as well and plan to attend a meeting in the near future.

Last edited by MrsBlack; 06-03-2006 at 09:20 AM.

 
Old 06-03-2006, 02:35 PM   #11
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Re: My world is falling apart - please help

The thing I wished someone said to me when I got the news my boy was Autistic was- They can learn, sometimes it takes a lot longer, but they can learn! The book my reginal center gave me was awful, I felt like my son was going to be as good as jello for the rest of his life. He is know 5 and he still doesn't use word to communicate- But He has proved to me that anything I work with him on he will learn- It just takes a very very long time. It sounds like your son is great. He plays with his brother- WOW, and he does try to use words for communication- That is really great. If you work with him and Speech therapist, I'm sure he will do great. Don't morn the loss of the boy you thought you knew, he is everything you thought before you found out!

 
Old 06-03-2006, 03:44 PM   #12
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Re: My world is falling apart - please help

Hi everyone,
Thanks so much for your encouraging words. I am just praying that he is simply delayed and nothing more. I am trying to find someone who could test him privately so I do not have to wait 10 months. Your words of encouragment are wonderful to read. I am just very confused with what autism is. I grew up in the 1970's and never heard of this term before. What causes this? I had a normal delivery. My son is 3 years and he is a real joy. He always looks at me when I call him, always has the most beautiful smile, rarely has temper tantrums. I should add that we travel a lot and he is wonderful! He always sleeps the night, knows how to pretend play, loves to hug and kiss, enjoys dinosaurs, cars, trains, stickers, etc. There is nothing unusual about him except he --
likes to rock, flap his arms when he is excited, has started forming 4-6 word sentences, babbles a lot and I have a hard time understanding his words (his 6 yr. old brother is great at figuring out his words!), he was a late walker (14 months) . I do not know what else to say but I am worried because the speech people were concerned about his severe expressive and receptive language delay. They also said he shows a lot of potential. There are times when he likes to be alone - but who doesn't?
I was wondering why the increase in autism diagnosis? Is it because of the spectrum "they" have created which now widens the criteria for what is unusual? I would love to know how your children do it school? Do they stick out? Also, what is a magnetic mattress pad? I am still learning about this.
Thanks again!

 
Old 06-03-2006, 06:05 PM   #13
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Re: My world is falling apart - please help

hello *hugs to you* my daughter little nicole has autism and she is 2 1/2 and she is a very special little girl. She never did the ADOS test but she has seen a neuro specialist who hasnt diagnosed her and she has seen him twice. anyway i took her to a program who has a psychiatrist who evaluates children and she was diangosed there. it was very important for the diagnosis so she could get the therapy called ABA it is very effective for children with autism. She still hasn't started with TSS yet but will soon this month i hope. my daughter doesn't talk at all but has come a long way. Just wanted you to know you aren't alone and if you ever need to talk i am here. *hugs*

 
Old 06-05-2006, 12:29 PM   #14
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Kolby HB User
Re: My world is falling apart - please help

Quote:
Originally Posted by Canadiangal
Hi all,
My name is Nina and I am devastated. In fact I am crying as I write this. My 3 year old son needs to get an appoint. with a development pediatrician for a test to diagnose Autism Spectrum Disorder. I feel so overwhelmed and don't know where to turn. My son is a happy, social little boy. He does have a severe to moderate speech delay for receptive and expressive language. He has really improved since he turned 3 this Jan. He likes to rock and flap his arms. No other unusual behaviours. He loves to play with his brother. The therapist was concerned because he does not pay a lot of attention to others when he is playing and not a lot of direct eye contact. I do not really know what autism is and I am very ashamed. I have a 6 year old who does very well in kindergarten and I feel like a horrible mother. I do not know what to do but I just feel so bad right now. Can someone please shed some light on this. My son rarely has temper tantrums, loves to play and smile, he loves to cuddle and kiss. He is good with pretend play. His speech is that of a 2 to 2 1/2 year old. I just feel like the walls are closing in on me...
Welcome!!! You came to the right place.
We all know what you are going through. It's not easy to hear that and it doesn't make you a bad mother. It sounds like your son is doing a great job.
Soon you will learn(start reading now) all the great things you can do to help him. And lucky for you he doesn't have temper tantrums. Mine does and it drives me crazy.
Hang in there it will get better.
Michelle
__________________
Michelle

 
Old 06-05-2006, 03:42 PM   #15
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rebby24 HB User
Re: My world is falling apart - please help

I also have a son that just turned three and he seems perfectly normal besides his delayed speech He lovesplaying with his sister and other kids, he loves to cuddle, kiss, etc. I am also trying to find out what the problem is if there is one? Remember this, jst because some peoples experiences have come out that there kids have autism doesnt mean that yours will. Every child is different. May God Bless you and your family!
Rebby

 
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