New here. Just looking for some friendly support. - Autism Spectrum Message Board

Karibou · 01-13-2006, 11:54 PM

Hi all,

I feel a little odd posting here because we haven't gotten an official diagnosis yet, but I think -- truly -- this is where I belong.

My name is Kari, and I have 25-month-old boy/girl twins. Evan, my son, has always been my miracle. The result of in-vitro, he survived an early delivery and then major heart surgery at 2 days old, without any apparent complications. I thought we were finally ready to get down to a "normal" life, but in the last year, I've begun to realize that something isn't quite right.

Both of the twins had significant language delays, but Alicia, my daughter, is finally taking off. She knows body parts and animal sounds, responds to directions, and is very social. Evan, however... isn't. He's a happy boy who likes being tickled and playing peek-a-boo, but more often than not he's on a whole other planet. The few words he does know are spoken more often to the TV than to people. He's never said "Mama," and he rarely, if ever, responds to his name. In the last six months, I've become more and more convinced that he has some sort of autistic spectrum disorder. Our speech therapist has been slow to refer us to a pediatric psychologist, but I have a master's in education and am in halfway through a graduate degree in special ed, and I KNOW something isn't right.

I came here not for a diagnosis, but just for some support. I really don't need a doctor to tell me that Evan isn't developmentally where he should be (though we do have an appointment in a few months.) My husband's brother, an adult, is profoundly autistic and completely nonverbal. For this reason, I think my in-laws are in denial that anything similar could be wrong with Ev. I think in my heart I knew the truth a long time ago, it's just taken a while to accept.

I look at my son and I see that he's happy. He's socially distant and very puzzling to me, but he's happy in his own way. I think I can live with that. I wish I knew what the course of our future is going to be. I've heard from so many people, "Oh, don't worry. He'll get it. One day he'll just start talking." It's weird, because I believed that with my daughter, but never with my son. I really think Evan CAN'T talk. For those of you with diagnosed autistic children, did you ever feel that way before someone put a label on it? Did you ever just look at your child and think, "You, my love, aren't like other babies"? It's such a strange feeling. Nobody else is willing to put a label on the issue yet, but you just know. *I* know. I wish I was wrong, but I know I'm not. It's all very surreal.

Anyway, I guess I'm just wondering what to do next. I have no doubt that our appointment with the specialist will bring some sort of official diagnosis, or at least more evaluation. As a special ed teacher, I've already given myself the CHAT, and we failed. I guess I just wonder what else we should be doing. The twins see a speech therapist every other week. Can you offer any ideas about what sort of things might be in my future? And any emotional support would be greatly appreciated. I'm a bit muddled these days, as you might imagine.

Thanks so much for any advice you might offer.

-Kari
Mom of Evan and Alicia

DrewsG · 01-14-2006, 06:05 AM

Hello Kari, I'm glad you have found us. All of us have been where you are right now. You will find caring, loving, understanding parents and grandparents on this site. We all had that moment when we knew something was wrong with our babies and feared that word autism. Drew is now 3 yrs. old and he has come a long way. It is a long journey. It seems overwhelming at first but you will find your way. You have taken your first big step by reaching out for help and advice.
God Bless you and your family. Glad to have you here.

Gialda · 01-14-2006, 07:09 AM

I can tell you from experience that mother's instincts are very accurate. I knew something was different about my son from birth. When he was only repeating a few words at age 3, I was told over and over that boys develop language skills later than girls and to wait and see, and that his behavior was a result of a need for structure and discipline.

And because I am a nurse, they treated me like I was over-diagnosing and looking for problems. And when he was diagnosed at age 4, I had educated myself enough (I thought), to deal with what I was told the future would be. But as much as my instincts were correct, my visions of the future were not.

My son has proven every prediction made about his future to be totally wrong. At age 4, he was child who isolated himself from everyone but me, had only echolalic speech, very little receptive or expressive language, and major sensory issues. Now at age 10, he was a full command of language although he still has problems with expressive lanuage at times. He has friends, plays sports, and has been in a regular class since Kindergarten and does faily well in school. He still has alot of the traits but they have made him unique and he is truly a treasure to be around. But I felt that way even in the begginning. My biggest fear was also what the future would hold especially since I had him at age 40 and worried about his care when I get too old, etc.

I do not know why he progressed they way he has. A nurse I worked with had a son who did not seem as delayed as mine initially, but he did not progress as much as mine. I tried all different types of therapies and diets and some of them helped. He did have a wonderful speech therapist but he received therapy 3-4 days per week in addition to what the therapist taught me to do. These message boards are wonderful for information that you dont get from the literature. Although I rarely post, I have read thousands of threads and it really helps to have the personal stories you can relate to.

bercol1 · 01-14-2006, 07:30 AM

Hi

My son is 6yrs old and was dx at the age of 18mths. Reading your story took me back to the initial stages and i remember the horrible feelings i had in those days. I guess my biggest worry was Anthony's future.
Through time I learned not to look too far ahead and deal with the issues that presented today. He was non-verbal till the age of 4yrs when he said his first words. He still has a limited volcabulary but can do many other great things. He can write and type on the computer, he can spell words that i have trouble with.
There are many therapies out there and you will find the ones that suit your son's needs. These message boards are great as you get lots of tips and help from people who are all in the same boat. (most of the people on the board are from America, I live in scotland but it's funny how the problems we face and the feelings we have are just the same) . At the moment we even have an ABA therapist who gives up her time to answers all our questions, which is magnificent. I have met lots of new and very caring people who have all helped bring my son along ( I have met some dunder heads too but you soon get to spot the people who care and can help) .
take care and keep posting, it will be nice to hear how things progress, it all gets a lot easier with the passing of time I promise.

Bernadette

jeffreys mom · 01-14-2006, 01:26 PM

Hi Kari; I know the exact feelings and emotions you are going through. I can tell you from our experience, you need the diagnosis to get an increase in services. I think ABA was a great thing for my son and our whole family. Seek the diagnosis to get as much help under the Early Intervention program as possible. The younger the help starts the better for your son. I was amazed with my sons progression in just 5 months time with intensive ABA.

Good Luck