Worried! Anyone else worry about PDD-NOS diagnosis? HELP!

Heather - posted on 08/30/2010 ( 18 moms have responded )

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Hi,

Please, I need some advice. My son, who just turned five, was diagnosed with PDD-NOS. He needs very little intervention and sees a speech therapist for a mild receptive delay and borderline normal expressive delay. Sometimes my husband and I worry about the future ... are we expecting too much change too fast? I am very emotional and scared, just want everything to be okay. Please let me know if you felt this way and what came of it. Thank you!

Heather

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Sandy - posted on 08/31/2010

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Moms worry.. even about their children that don't have a diagnosis, that is what we do. I have 7 children and 4 of my boy have been dx with something. The twins however do have ASD (Autism and PDD-NOS) I am always worried about them. The twins just started 1st grade two days ago and I have constantly checking my phone and waiting for a call from the school. They are doing GREAT academically! I do however worry a lot about the future and what it might bring for them, I wonder if they will ever be able to live on their own. Only time will tell, so for now I just enjoy them, love them, and am greatful they are in my life. They have taught me a lot.

Heather - posted on 09/13/2010

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Thank you Julie! Austin is very "typical" in a lot of ways and we had a hard time getting him diagnosed. He is lovely! I love him for who he is and would never change anything. I realize PDD-NOS makes up who he is ... I am very blessed to have him. He is lovable, sweet, smart, funny and social too. I wouldn't change anything about him. Like all parents, I just want him to be healthy and happy! Thanks so much for the support! ♥

Angie - posted on 09/02/2010

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My oldest, age 8, has pdd-nos. Since he was 3, I've done all my own therapy with him, and I homeschool him. He has improved so much that most people don't even know he has autism. The only thing we still deal with is the meltdowns, but those are nothing like they used to be! Just tune into him, help him to learn how to cope with this world and to learn to control his behavior and he'll do fine. PDD-NOS isn't that bad, I work with kids that are severely autistic, and they're the ones who's parents really have to worry.

Barbara - posted on 09/01/2010

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first realize that autism can not be cured compeletly. Having two children on with autism and the other with pdd it is something I have come to learn. It took me many years to come to this conculision and now I can except Jon and Kay for the wonderful children that they are. We did speech therapy for 13 yrs with Jon and 11 yrs for Kay. They are not always the best at interacting with same age peers but they are doing better. i wish you your husband and son the best of luck. and its ok to grieve and go through the griefing process like you would with any other diagnoses God Bless

Julie - posted on 09/01/2010

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Its normal to react, I remember when our son was diag. with low functioning autism....remember a few things 1) he'll be happy as long as you accept him and love him; I've worked with a lot of PDDNOS/Autistic adults; never did I find one that was unhappy because of their disability 2) get him a pre-school/school where they can understand and work with his disability 3) expect him to improve over time...don't think he'll never learn etc., be realistic as well though, and be proud of any accomplishment he makes: with our son (he's 9 now) its been 7 yrs. since his diag.). He has improved/learned /progressed so much. I would've never thought back then that he'd be able to read , be potty trained, ride a 3 wheeled adult trike along side his brother & sister while on their bikes, and even talk (despite being not a normal type conversation,,,he's been talking for about 18 mo.). 4) just accept the PDDNOS as part of him (like a personality trait),,, it's there it'll always be there and it will cause heck but it's not ALL of him like we learned there is a regular little kid in there somewhere. It mixes like a pot-luck with the disabled parts of him and your boy is what you get 5) take a deep breath...rememebr God made him this way for a reason and he sees him as beautiful and wonderful as any other child, we use Erik (our son) as a poster child for autism... he plays t-ball, rides his bike,does church programs (with help) always using the chance to expose/talk to others about autism. He has affected more people and touched more hearts inhis 9 yrs then I have in 40!!! 6) talk to him/treat him as normally as possible making necessary adjustments when needed..writeme if you need to chat more;God bless

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18 Comments

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Antonis - posted on 02/07/2013

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hi
my name is antonis .i saw you post and you son with dolls and it remind me of mine .
Our son has pdd he is 3 years old .our life is up side down since the diagnosis .we are have manage to fix same things and get our son to speak same sentences which is great.
We are worring too much about the future .my son like to play with dooll too much .and this is also strange to us .he also like the pool too much,he also likes computer too much.
the thing that worries me a lot is that along the pdd cames more proplems like OSD and slow process of brain which have to be check later .We have be focus too much on his therapies especialy with ABA. our email is antonisnathanael@gmail.com , me and my wife we be happy to exchange knowlages for the best of our childernes. good luck you too and god with you.

Michelle - posted on 12/30/2012

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Its been 2 years to this post, i hope uv discovered much of ur son's remarkable traits! Id love to hear them :) happy new year 2013!!!!

Michelle - posted on 12/30/2012

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Hi, 2010 was the year my son was diagnosed with PDDNOS, (he was turning 4) that time. Ive had this anxiety too but i kept praying till i realized God's TRUST in me that this child was given and entrusted to me coz HE believes i will love him more thanmy own life. That trust, i value so much. I used my skills in research and communication (i can always communicate with kids coz i am animated most of the time, hehehe), i used these God given skills and found out that B- complex and ZINC supplements will and did helped him to be more balanced in OT tasks and his waiting skills prolonged coz he was more focused (balanced). Hes had bcomplex and zinc supp 6 months since statred ot and st.

So about that God's reasons for giving some parents kids with these conditions, its an honor for me for being a chosen one and entrusted me one of his great creations! My son add and subtract to the millionth, divide two digit numbers, multiply up to 8. He just turned 6. He progressed BIG TIME beacuse of intense coordination of school and therapy center, i call it tripod grip. 80% of the efforts comes from HOME. Now he approaches people for things, he loves CRACKING JOKES, he reads like a 2nd grader, comprehendsstories and perfects school work, comforts crying kids, no one can tell hes undergoing therapy coz he interacts byjoking a lot! We are working hard on his social cues and u bet i have to be more animated than ever coz i stimulate his mind by showing pictures like what happens inside his stomach and intestines when he doesnt eat at the dinner table, he visualizes and so he complies.

Their strength is they are visual thinkers and thats easy for me coz i am a visual thinker too, i get lost with too much words and no pictures. So, use more visualization and lets not waste God's trust in us, he gave us these challenges coz we are the chosen ones for these kids. Congratulations for being a chosen one!

Lynette - posted on 09/13/2010

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look for the book"you are special"by max lucado it is very encouraging to kids an parents.while your at it read psalm 139vs 13-18.nothing is a accident everything is as it should be.all God's children are special an he has a purpose for all of them.my noah is teaching me patients an the purest love toward all others,think about the wondrous things you have been learning through your child whether they have autism or are typical.

Heather - posted on 09/13/2010

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Thank you so much for all the replies, encouragement and support everyone! ♥ Heather

Heather - posted on 09/13/2010

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Thanks Angie. Yes, I know people with children who are sever. My heart goes out to them. It is difficult for sure.

Heather - posted on 09/13/2010

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Thank you Tracy! I did start a journal and did think of where I was last year at this time. Big difference! Thanks! ♥

Heather - posted on 09/09/2010

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I thank all of you for your support! Austin has just entered a new school program and has put the teachers through the ringer. He is smart but a handful. Thank you again everyone! Best wishes to all of you!

Christi - posted on 08/31/2010

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I wish I could give you words of wisdom, but my son is only 20 months and we got his diagnosis about two weeks ago. I worry about the same things, whether he will be able to function day to day on his own, ect. My older sister is low functioning Asperger's and I see the troubles she is facing (she is 15) and I am worried if my son will have the same issues. All I can say is pray and keep your chin up. Take one day at a time and you might be suprised how the future turns out.

Lynette - posted on 08/31/2010

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My Noah now 4,was diagnosed two years ago and i still get overwhelmed over him fitting into kindergarten next year never mind the distant future scary for sure,i think all parents of kids on the spectrum worry an feel overwhelmed

Jane - posted on 08/31/2010

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My son 2 who has Asperger's graduated high school last spring and started university last week.

His biggest struggles are in the area of personal management - making him do things that are hard, and being organized.

Mind you, he wasn't diagnosed till he was 13, and I think a lot more progress could have been made with an earlier diagnosis. I do believe he will one day live a "normal" life.

Tracy - posted on 08/31/2010

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Hi Heather, I have mixed news. I have an 11 year old son who we have had for 2 years, when he came to us he did not speak and was extremely aggressive after questioning alot of people in DCS we found he was diagnosed 5 years earlier and had no therapies outside of school. Now 2 years later mind you he is reading on a 1st grade level and can write several site words. He also attends general education Socail studies and science classes with assistance from an aid. He is curretnly carring "modified" honor roll status and is his 5th grade class statesman. No do not expect too much too fast yet I find myself forgetting how far we have come. My suggestion is keep a journal so in those extreme times of frustration and defeat it can remind us of our childs accomplishments. My son went 9 years with no help or guidance and has a long way to go, while I know he will make it I worry if my husband and I are. Hope this ca help some. Your son will surprise you if you let him, this (from experience) I promise.

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