How did you feel when your child started getting tested?

Maggie - posted on 09/06/2011 ( 24 moms have responded )

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We recently discovered that our daughter might be mildly autistic. We are currently on a waiting list to get her fully tested. My daughter is going to be 4 at the end of this month and it is hard to think that my little girl might be autistic. Although we are looking at something mild, it is still hard to deal with sometimes (mostly when i see her smile or what her play). When you first found out/started going through the motions to getting your little one tested, how did you feel? how did you deal with the news?

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Thomasine - posted on 09/14/2011

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I was happy to know what I was dealing with , I aready knew my son was not like the other kids.....just happy to know what we was dealing with , and ...my son dose have aspberges.. but he is doing very well for himself ..he is a Junior in college ...mutlti dispineary studies...wants to help kids with disablitys in some way when he graduates. If you know what the problem is you will know how to help . I aways told him the sky is the limit ... never give up just keep trying .... if you shoot for the moon , you may hit a star......everything may not turn out the way you think it will , but things will still be ok .

WJ - posted on 09/13/2011

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for me it was guilt. I felt guilty about having to drag my son from one specialist to the next. i felt guilty about having to answer some of the questions they asked me with my son in the room. and i felt guilty for not being understanding enough about his special needs. he wasn't offically diagnosed until he was 8 going on nine, but when the aspergers diagnosis finally became offical. i felt both a sense of disbelief and a sense of relief. I finally had something concrete toresearch and lern about. i finally had access to resources, and could get himon an iep at school. in the end it was worth it, but for a while there i was ready to give up and say that's enough, no more testing. it was quite an emotional rollercoaster for me.

Karen Perlman - posted on 09/13/2011

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I think I always knew Nick was different, when we starting going through all the testing I was just really scared. but when they told us I was really kind of reveled. I knew we could deal with what we had and I could get him everything he needed.
He has great services in school and we have learned how to deal with his needs. The best thing I can tell you is to take it one day at a time. My son is almost 10. We have great days and we have bad days. Along with the difficulties of the diagnosis come some wonderful attributes. my husband and I always say there isn't one thing we would change about Nick becasue if we took away the autism we would lose some of the great qualities too. Maggie is right they are the same kids with or without the labels.
Ask as many questions has you have too and don't be afraid to stand up for your child.
good luck...

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Keri - posted on 10/13/2011

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When we first found out our son might have ASD we were devostated...... When he first started getting tested he was 2 and a half.... I went through a huge range of emotions, I was scared, angry etc..... But once we got through the very first appointment it was like WOW what am I so worried about.... "Hes my son and always will be and nothing will ever change that" "Yes there will be challenges and trying times but we will get through them and come out stronger and even more aware and we can share with people who want and or need help" My son is now 10 and he is a very bright smart young man and has a good handfull of friends (which has even surprised me) He does from time to time have his "moments" but when you look at it all children do that :) Our son has High Functioning Autism (mild) and he to us is the bomb (sometimes literally LOL) :) All the best with the process and always remember She is and always be your lil girl and her light will shine so damn bright it will be blinding XOXOXO

Erin - posted on 10/12/2011

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I think deep down every mother knows. The diagnosis just makes it real. When I got the official diagnosis the specialist reminded me that he's still the child he always was and will grow up to be who ever he's going to be. Only now he can get the help he needs to have a happier life, knowledge is power. Sometimes it's still hard, I worry about his future, but what parent doesn't. Nobody knows how their children's life will turn out we're just a little more aware of that than other people.

Erica - posted on 10/11/2011

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Honestly I felt relief that he was going to get the help that he needed! David is 8 now and has been on medication and goes to both psychiatric and occupational therapy appointment. We are also getting the help we need from the school with his IEP and many meetings he finally got accepted into the autism class at another school for this school year.

Maggie - posted on 10/04/2011

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thank you everyone for your kind words of wisdom. i greatly appreciate it. makes a world of difference.

Laura - posted on 10/04/2011

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My son started off developing normally, actually with an acelleration in speech, at 10 mths he could say two forms of mom and dad correctly to the corrisponding parent, Duck for his grandfather, Bubba, hi, and bye. He had what appeared to be a seizure and then reverted back to saying only ma ma and dada and not to the correct parent. So I orginally thought it had something to do with that. He is my first child, so I didn't realize that the other delays were there. I was only concerned with speech and his behavior. He would not respond to his name, I thought this was also just a delay. I had been telling his peditrican for months something was wrong finally at 18mths I was referred to the Infants and toddlers program. Who told me he had flags for autism. I was a little afraid, knew something was off but didn't think it was that serious! I was afraid of how people would accept him. I was not scared for me I am strong and have delt with autism before i am still concerned for him. I am not done his testing yet. He has been diagnosed with ASD, receptive and expressive language disorder and low muscle tone. I am now doing everything I can for him. He is going to Kennedy Krieger, and to the infant and toddler program, aba classes 4 days a week.

Amber - posted on 10/04/2011

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In the beginning I was like ah there's nothing wrong with him I don't know why he's going through this, but then as he was being tested I was like well yeah maybe he is a little different. Now when he diagnosed it was a hard pill to swallow. I took the diagnosis very hard. I cries on the way home and when i got home..It's still hard, but I just have to remember he's still the same little boy I loved before he was diagnosed. There's nothing different about him, I just know how to deal with him better now. Talking to people about it helped me a lot

Fran - posted on 09/21/2011

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As a baby, my son was super clingy and didn't even want to go to his father when he got home from work. I KNEW something wasn't right, and when his regular ped. told me to chill out, nothing was wrong, I wanted to believe him but just couldn't. When I saw a ped. assistant on his 1 year 6 month check up she just came out and told me she thinks he needs special testing for his sever delay. When all was said and done and I was told he had PDD/NOS I was still in shock even tho I knew something was wrong all along. I guess, when you get married and think of your future children you don't think of "what if he/she has special needs", you just want them healthy and happy. I thought, what does this mean to him? Yes, it was very scary but I think that is only natural. You want the very best for your child, so when you hear something is wrong,and at the time they can't give you a "diagnosis" you freak out. I know I did.

Sheree - posted on 09/14/2011

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My son is four and it is thought that he have mild aspergers and adhd. He is in the middle of assessments at the moment and my husband is in denial, and I am hoping the tests will show what behaviour I see from my son but at the same time I dont cause I want him to be able to cope with day to day life alot better without needing help.

Diane - posted on 09/14/2011

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Maggie, when we first started going thru testing and various specialists, trying to find out what was going on with our son, I felt sadder than sad, and so worried about what the answer ]would be. However, when we started looking for answers, it was back in 2000, and it took another year after being bounced from specialist to specialist before we even heard the A word. Once we knew what we were dealing with, and learned that there were many avenues we could take to help him improve, it was very empowering. By the time he was diagnosed with mild-to-moderate autism back in May of 2001 just before turning 3, I don't remember being sad any more. I know that sounds crazy, but by that time, we knew what we were dealing with, and had a long list of things to do to help him. It was prioritized by "the low hanging fruit", or the things that would be cheapest, least invasive, with the biggest result. His DAN Doctor helped prioritize treatments and supplements the same way, and although this autism journey is rough, it gets so much better once you see positive results. We celebrated the little stuff. Each small amount of progress was huge early on. When he really started to make tremendous gains and be able to mainstream into school only one year behind his same-age peers, it felt nothing less than exhilarating. Our journey has definitely been a roller coaster ride, with many ups and downs, twists and turns, but Autism doesn't control our family anymore.

Diane - posted on 09/14/2011

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In response to Ellen, we are in Middle TN, Southern Williamson County. Our School District is great, and we have our best IEP team so far since beginning our journey. They know what our son is capable of, and are focused on helping him be successful.

Alex - posted on 09/13/2011

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It is definitely an emotional rollercoaster but what a relief when you find a few answers that can help you move forward. My son was diagnosed with PDD at age 4. I knew something was different when he was 2 but it was hard to convince my husband. Once he was diagnosed I was able to put early intervention into place as well as learn more about working with him at home. I have done research for years and he is now entering the 4th grade in a mainstream/collab classroom and thriving. We are very lucky and he is one amazing boy. It's not an easy road but it pays off in the end when you are able to see the changes, growth, etc... Positive attitudes are key. We changed the way we spoke to our son when he was younger, I call it positive talk...we used only positive words to help him not focus on the negative. We also changed his diet much to the scrutiny of everyone. He has been gluten and dairy free for 3 years now and he went from being a behavioral issue to no issues whatsoever (well we do have the occasional age appropriate issues :o) I'll take those anyday!!

Alice - posted on 09/13/2011

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I was depressed and anxious for about a year (I have twin sons with moderate/severe autism). Then I started to adjust to the reality. It's still stressful, but I think the human mind/spirit finds a way to adjust to things so you can go on and have a good life and enjoy your family. There are still challenges all the time, but nothing is as bad as the time right after you figure out there's a problem. Best wishes to you and your family. By the way, I think my sons are actually happier than many "typical" kids, so that's a comfort.

Lynn - posted on 09/13/2011

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When I first heard the word Autism and my child's name in the same sentence I cried for days. I couldn't sleep for a week. I would just lay in my bed at night and stare at the walls in a cold sweat flipping out. My son was only 3 at the time so it was so hard to tell how it would pan out. He is 6.5 now and I can tell you with a lot of early intervention and work at home he is doing great! I feel like I got most of my grief out in that first week for who I imagined my son to be and slowly learned to accept a different future for him.

Ellen - posted on 09/12/2011

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Diane - where in tn are you - east middle or west
Alex is 9 and we too have seen dramatic changes since he first started getting help at age 2
still have trouble with people who say 'he doesnt seem autistic'

Philomena - posted on 09/10/2011

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Well, I knew for some time that there might be something wrong with my daughter. So when we were finally able to get her tested I actually felt some relief that we were going to find out. I was not happy that it came back that she has pdd-nos, which is on the autism spectrum, but at least we know. Now we can put our efforts into helping her. She was 10 when we found out and she could tell that there was something different about her. And it was tearing her up inside. So, just try and remember that now that you know you can get your child the help they need and maybe it will not be as bad as you think.

Diane - posted on 09/09/2011

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Our son's official DX when he turned 3 was mild-to-moderate autism. At that time he was non-verbal, tantrummed on average of 4-6 hours in combined episodes per day, and was significantly delayed in nearly every area of development. However, we implemented an aggressive intervention plan combining dietary intervention, medical support under the care of his DAN Doctor (Defeat Autism Now), and a 40-hour per week home ABA therapy program to help him overcome his learning deficits. By the time he turned four, after one year of intervention, he had 300 words (enough to be able to communicate his basic wants and needs), tantrumming for months had been reduced to maybe 30-60 minutes PER WEEK in combined episodes, sleep completely normalized, and many of his autistic symptoms had gone away. By age 6, he was mainstreamed into typical Kindergarten with an aide. He is now in Middle School, still has an aide during his more difficult subjects, is a straight A-student, and very high functioning. He still has autism, and has an IEP, but he WILL be a tax payer, get married some day, and have his own family. He is living proof that autism is treatable, and recovery is possible. Much of what worked for our family can be found at www.tacanow.org - Talk About Curing Autism, a non-profit organization of families with autism helping families with autism.

Diane in TN

Tania - posted on 09/08/2011

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well i was terrified , nervous and just wanted to cry thinking about it ...i also went into denial thinking na nothing is wrong then back and forth between all these feeling . i have two autistic sons and still to this day am acceping on day and in tears the next you just take it day by day . good luck

Catherine - posted on 09/07/2011

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When I first started out getting my son tested, I felt as if I had betrayed him. It was devistating. I learned that you had to mourn the child you thought you had while accepting the way your child will be. After testing though I did learn a lot of ways to help my child. I started feeling pro active and that really helped. My friend and I started an Autism chapter for our community. It really helps to not feel alone. Good luck and I hope everything turns out well.

Jada - posted on 09/06/2011

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Very nervous! But I was accepting of whatever the results were. I knew that the love I have for my son will never change, and that's all that mattered. I just kept thinking, if we do find out he has autism, we're one step closer to helping him overcome his challenges and live a happy life.

Diane - posted on 09/06/2011

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I was devastated to learn there something was wrong with my son, but we had to do something as he was continually having meltdowns, he couldnt cope with the simplest things like going to the supermarket with me, and his life was generally pretty miserable when he was away from the house (or away from Nana's house - his other safe haven). So when he started the testing, I felt relief that at last we might get somewhere.

I still look at him sometimes and wish he wasnt going to have to battle so hard in his life, and sometimes I worry what it will be like for him when he grows up. I did grieve when he was first diagnosed, as although I knew he had it, I could stay in denial without the diagnosis. But all up, the feeling of relief in knowing what was wrong, leading to positive action to help him was very good.

My son has improved out of sight. He goes to a mainstream school, and is the best reader in his class. He is still lost socially but is doing a good job of copying the niceties. His life is better, our life is better, and I know now that he will be alright.

Maggie - posted on 09/06/2011

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I felt terrible at first. I didn't want to think of her life being limited. But then a friend reminded me that a diagnosis is just a label. She is still the same child you know and love. The label can help you get the right services. Try not to focus on the label or let it make you upset.

Best wishes.

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