New Here - Devastated/Distraught

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iVillage Member
Registered: 03-25-2003
New Here - Devastated/Distraught
12
Sun, 03-05-2006 - 9:50pm

I have been on iVillage for years, first on IVF then on Pregnant with Multiples (I have triplets), now I frequent the gifted child board - I have always been able to come here for support and now I really, really need it. I feel like I am going to lose it very soon.


I will try to make a long story short.

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iVillage Member
Registered: 04-07-2003
Sun, 03-05-2006 - 11:59pm

Hello and welcome! I am pretty new here myself...my son Jacob (also a multiple, has a twin sister) was diagnosed with autism in Sept. he was 23 months old at the time. The red flags for us was his expressive language was really bad, cognitive was bad, speech was bad and his repetitive behaviours. He has been in IE since he was 17 months old and only says about 3 words. Still has the obessions of openeing and closing doors...but like your son, he is very loving, gives kisses and loves to play with his sisters. I had a feeling he was autistic since he was about 14 months old....we caught it early and with therapy and patience, we were told by his psychologist that he will be in a typical class by 1st grade. You learn to love them more, kiss and hug them so much more because it could be so much worse...I've seen worse with my friends children. We are going to be starting intensive autism treatment 35 hours a week....aba thearpy. I'm really anxious to get started.

If you get a diagnoses for you son, you are going to be devestated and crushed...act fast because the younger they are the better the outcome. You can cry and be upset, it's so normal to do so. Love your son, that's the best thing for them!

Keep us posted and good luck!

Keri

iVillage Member
Registered: 03-26-2003
Mon, 03-06-2006 - 12:01am

The future holds alot of promise, possibility, love and laughter regardless of whether part of that future has something to do with autism.

Autism is not the life sentence it once was. Many children do well, make incredible gains, and live happy lives. Some (perhaps a good majority of milder/higher function children) go on to live independently, have jobs, families, etc.

We don't know what the future holds for any one of our children, typical or not quite typical. With kids with ASD the road is a bit tougher to navigate but getting there becomes even more special because you appreciate it so much more.

Your son sounds like he has a LOT of good potential and skills. That is so helpful when starting out. He sounds alot like my daughter at that age. She knew her letters, colors, etc prior to age 2 but couldn't follow simple directions. She also didn't use multi-word phrases until after 2. She didn't get services until age 3 (darn pediatrician) and at 3 she had phrases but they were quite odd and still delayed. Currently she is in middle school with a diagnosis of Aspergers' syndrome. She is mainstreamed for all academics and is getting B's and C's but many with AS I know get A's and B's. Her organization skills are horrible, poor kid. She does have aide support with another boy through a specialized program that helps alot. But she also now has a "group" of friends she hangs out with everyday. She gets phone calls and goes to youth group.

In many ways she is a very typical preteen and in many ways she is a typical Aspie. She is an absolute sweatheart and can be frustrating too (but what 6th grade pubescant girl isn't?). She is actually pretty proud of her Aspergers and has no problem telling other kids she is autistic. She is pretty darn self assured and is also getting to be a good self advocate which helps alot. Instead of withdrawing and not doing work she is learning to tell people when the noise is too much or she needs to take a break and work somewhere quieter.

Cait is great with Animals and small children. She is a fabulous artist and writes wonderful poetry. She loves to ride horses, draw, and chat with her animal buddies online.

She is silly and stubborn and goofy and gorgeous and autistic. It is just part of who she is as a person. It makes some things harder and some things easier. It isn't all of Cait, just a piece of the puzzle that makes her unique and sometimes makes me crazy.

Renee

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Mon, 03-06-2006 - 8:39am
((((HUGS))))))

 


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iVillage Member
Registered: 09-12-2004
Mon, 03-06-2006 - 9:32am

When you first get the dx it is so overwhelming. I remember being relieved that I wasn't causing the problems and that I wasn't just a completely inept mom. My family had been telling me I wasn't disciplining my son and that if I simply did this or that the issues would go away. Well they didn't so it was a relief to finally have some answers, but then it was like, "Well, NOW WHAT?" and a feeling of total dispair and emptiness. But after a lot of research I realized that my husband and I probably had a lot of the same issues as kids, and we grew up, found each other and have a good life together so there is definitely much hope for our son. Try to keep in mind that there is SO MUCH help out there. We have also noticed a lot of improvement just because we do have some answers and we aren't viewing the behavior as a discipline problem. Having the dx helps in that manner and will hopefully alleviate some of your anxiety because now that you have an idea what your challenges are going to be you can develop a plan. Try not to get too discouraged. We've had the diagnosis for over a year now and it becomes less overwhelming -- it truly does.

Kelly

iVillage Member
Registered: 09-12-2004
Mon, 03-06-2006 - 9:38am

Oh, I also meant to tell you that people saying he's fine, quit trying to find a problem....I heard that, too. It's hard when friends and family act like you are being a hysterical mom, but know that you are doing right by your son. Early intervention is very important and think how early you have caught this! The earlier you catch it the better, because you can be working on it rather than just stewing over how you know something is off but can't put your finger on it.

I'm rootin' for you!

Kelly

iVillage Member
Registered: 02-24-2004
Mon, 03-06-2006 - 2:34pm

Theresa,

Hi and welcome! I still have people in our lives that have doubts. They don't actually say it directly, but it's the way they act and the things they say. Our son is 7 and dx'd HFA. His traits are mild...at times. He tended to be more autistic at home when he was younger, so other people didn't really notice everything that we notice.

His traits have surfaced more now that he's older, but he's still able to hold it together pretty well. With my help and with the help of his speech therapist.....he's talks well now, and is doing fine in 1st grade.

Go with what your heart tells you. I wouldn't listen to what others have to say....you know your children the best! If you feel that something isn't quite right, then go with your gut and get it checked out.

My son always made eye contact with me, his dad, and his brother too. He was and is still very loving, and affectionate. Although he's not always able to "read" other people, he is able to "read" us and our feelings too. Autism is a very wide spectrum. All of our kids here are different, though we share alot of things in common, as well!

michelle

iVillage Member
Registered: 08-26-2005
Mon, 03-06-2006 - 11:06pm
Theresa,
I just wanted to say welcome! I have a 3 year old son diagnosed last year with PDD and a 21 month old daughter who is also in E.I for sensory problems right now but we plan on having her evaluated in the summer also for PDD. This board is great and all the moms are very supportive so I hope you stay around.
Teresa(without the H)
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iVillage Member
Registered: 03-28-2003
Tue, 03-07-2006 - 1:04pm

delete





Edited 2/19/2008 9:23 pm ET by littleroses
iVillage Member
Registered: 09-12-2004
Wed, 03-08-2006 - 8:56am

I like your take on labels.

Kelly

iVillage Member
Registered: 06-25-2003
Wed, 03-08-2006 - 10:24pm


Theresa,

welcome to the board.

You know your son. You know his abilities and strengths, and even if he does end up with a diagnosis, none of that will change. What will change is your ability to know him from a a different angle, with additional information and resources, and to help him to succeed on his terms.

The earlier you understand what is going on with him, and how to work with it, rather than against it -whether it officially has a name or not, the better his future will be.

My kids re now 7 and 5, and are blossoming now after a lot of work and help. They are funny, kind, playful, smart and sometimes very wise. I wouldn't change them for anything.

Hang in there. You are at the most difficult phase of this journey. The unknown and the feared is far worse than the known and understood. Knowledge is power, action is empowering, and help is available.

You have done the right thing to schedule the eval and to come here. Your gut instinct is serving you well. Stick with it, and you will be OK.

(((((hugs)))))

-Paula

-Paula

visit my blog at www.onesickmother.com

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