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

:wave: 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.

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.

Hi :wave:
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

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

Thank you all so much for the support and advice. I'm really looking forward to our appointment with the specialist because, more than anything, I wish we had an actual diagnosis. I'm tired of people telling me I worry too much. It's a litte frustrating because the doctor schedules out five months in advance! That's a long time to wait, but there's not much I can do about it. We're already working with the EI folks in our county. The twins receive speech therapy every other week and I'm starting a Hannen class next week. Still, I can't help feeling like Evan really needs more than he's getting. And it makes me mad that we need to wait another five months before we're going to get any help. Our EI coordinator seems pretty unconcerned, which bothers me. She keeps referring to the 3-year-old testing (which determines if the twins will qualify for help in the public school system.) I, of course, want to shake her -- he's only TWO. I don't want to wait a YEAR for more help. It's very frustrating.

I'm sure there willl be lots of ups and downs in the months and years to come. My husband has been very supportive and down-to-earth about this, but my parents and in-laws are in total denial. They've all bought into the "he's a boy, they're more likely to be slow to talk" theory. It makes me crazy that no one else will acknowledge the problems he's having. I figure I can either face the facts and get some help for him, or I can stick my head in the sand and pretend everything is great -- and waste precious time.

Thanks again for listening. I'm sure I'll be posting more (and certainly reading more!) in the weeks to come. Your encouragement is really what I needed to hear!

-Kari

Hi Kari,
I hope you are still reading these because I am here for the only the 2nd time and I am sort of in the same time frame. I have a 3 year old that I knew from 6 months something wasn't right. Even my husband said I was over reacting and I am just now getting some support from him. My son has the most explosive extreme temper you can imagine and it goes on from the time his eyes open to the time they close. He happens to be verbal so for some reason people don't see him as autistic. I have even had strangers tell me under their breath that I needed to contact Nanny 911! I think my biggest battle was self doubt. I constantly doubted my knowledge of my child. I am getting past that because I know that noone knows your child like you...and I mean no one. Just be confident that you are doing everything you can for your child. It is very lonely but I am thrilled to have found this board!
Best of Luck. God Bless
Day2Day

I too had that feeling of knowing my child was different from early on. I had always called him my 'special boy'.

You have a very good attitude towards your son and that will be of great benefit to him if he gets the diagnosis of autism. I also looked at my son and saw that he his a very happy child and as long as they are happy you know that they can have a good life no matter what the future brings.

My son was totally non-verbal until the age of four. Then it was just words he copied off television. But by the age of four and a half he just started talking in context. That was a huge leap forward for us because he was no longer just copying words and not knowing what they meant - he was now putting a few words together with understanding of what it all meant.

I wish you good luck and I am sure that no matter what the diagnosis of your son is, he will continue to bring joy to family in his own unique way. :)

My husband had once said to me "I think you want him to have autism." I could have smacked him. Mothers just know. You are doing the right thing.

By the way, I tell everyone this because it is amazing how it can help. Get the video called Signing times with Alex and Leah. It is a great way to help your child communicate until therapy begins. Look it up under google.

My 2nd peace of advice to you....play with him a lot. Make puzzle peaces dance if you have to. Make playdoug sing and spagetti fly. Whatever you have to do to get him interested. Floor time is good time.

Kari, I hope you still are reading.
I just found these boards, and hope I can offer you a little support.
My son Garrett is age 26. But I completely understand the feelings you have when you just "know" what is wrong. I also had a mother's instinct.
Yes, you will worry a lot about the future. For some reason, I still remember with great clarity a moment when I realized Garrett would not be able to deal with all the intricate business of adult life. I happened to be driving to work that morning, going over and over in my mind the puzzle of what was going on with Garrett, a toddler at the time. Suddenly it just flooded over me -- he wouldn't be able to deal with taxes, insurance, a job, driving, etc., etc., etc. I think at that moment I fully realized he was Disabled, with a capital D.
I was right. Today Garrett is completely nonverbal, has limited comprehension, obsessive behavior and so forth. He can't read or write. He cannot work.
But here's what I hope will comfort you a little.
He has found his way with great courage. He has done a beautiful job of adapting to the world as he experiences it. He continues to learn, and he truly loves life and loves his family.
And I've found my way too. It's been rough at times, and I've needed a lot of help. Yes, I still have concerns about his care as I get older and of course eventually pass away.
But I hope you know you're not alone, and will always be able to ask other parents to support you and listen to you.
I realize you don't have an official diagnosis So my comments here are just meant in the spirit of support. Perhaps Evan does not have a condition on the autism spectrum. But if he does, I truly believe you all will be fine.
Georgia

I feel like you just wrote my message for me. My son is 25 months old as well and we are in the process of having him diagnosed. Eventhough we may not want to admit it we just know in our hearts what the outcome will be, autism. For me, I am ready to hear that diagnosis. All I want is to know what to do to help him. He is such a happy contented child most of the time. He is very active though.

What is so frustrating for me now is that my son is always glued to me. If I am home he wants me by his side all the time. My husband and 5 year old daughter are great in that they can play with him and distract him so that I can do what I need to do. He gets really upset when I have to leave for work and it takes a lot to calm him down. I sneak out whenever I can but it is not always possible.

Also recently it seems like he is developing fears or is really uncomfortable in certain situations. When we have to go somewhere where there are more than just a few people he gets really scared and all he can see is the door. There is nothing you can do to distract him from that. We usually just have to leave with him. Originally, this only happened when we went to different places with people he doesn't know well but last week it happened when we went to visit my family. We went to my sister's house and as soon as we got in through the door he turned around and started trying to open the door and started crying. We could not calm him down and this was with only family members that he sees quite often. He has never reacted like this before. This was so hard. Luckily my family is supportive of what we think is going on and is there to help whatever the diagnosis.

It is so hard, as you all know!!

Our latest dilema is that he started getting out of his crib on his own. We then converted his crib to a bed. He has always slept through the night or should I say stayed in his crib all night long. He always woke during the night but would hit the button on his musical aquarium and go back to sleep. Now that we have his crib turned into a bed he is getting out of his bed and coming into our room every hour or so. Once he is up he wants to play. I have taken him back out in his room and put him back in bed but he just runs right back to our room. I have tried staying with him until he goes to sleep but he wakes within a short period of time agian and is out in our room again. He will not sleep in our bed. If he is in our room he wants to play.

I work and I find it is really taking a toll on me. I am only getting a couple of hours sleep a night. My husband is great but in the night my son only wants Mommy. I need all the energy I can to deal work and play with him. Does anyone have any advice?

How premature was your little boy? Was his twin sister as early (not as dumb a question as it sounds - I know several sets of twins where one baby delivered very early, but the other was able to hang in for a few weeks longer).

The reason I ask about his delivery and surgery too, is to help you with your inlaws. They probably DO want to deny that anything is amiss, what with their other son's autism...silly, but human nature can seem to whisper "you're to blame for the faulty genes". There's no fault with anyone, but I do understand they might be sensitive about it.

My PDD NOS son Cole, now 5, was 14 weeks early and weighed a bit over 1 pound. He had some complications in the NICU, but for the most part is fine today. Well, except for PDD NOS! Anyway, you can tell your inlaws that lack of enough oxygen, premature delivery, any flavor of emergency delivery, and any sort of NICU event (surgery or otherwise) do show correlations with mild forms of autism.

I've exhausted myself trying to figure out whether Cole's got a preemie hangover (the original dx) or autism, and have got onto those medical sites where you can type in keywords and then go to related papers. I found article after article about various perinatal & neonatal problems linked to autism.

It may not mean much to ya'll as to how your little sweetie got a hitch in his giddy-up, but if you can legitimately blame it on the stuff surrounding his delivery, then your in-laws may feel less guilt prone and BE MORE HELPFUL TO YOUR SON! Also, it can help you feel more hopeful about your grandchildren if you think there's an "environmental" reason, as opposed to a genetic one. It helps me in that light!

Keep us posted, and chin up.

Hi, I'm new here also. I can tell you what has worked for my son. To start with, Jacob was developing normally, even a little early right up until he got his 18 month immunizations. He had the DPT, MMR, and Hepatitis shots all at once. Within one week he had lost all verbal ability, stopped making eye contact, stopped responding, and began developing stim and obsessive behaviors. I knew what was wrong with him, but I kept hoping it was something besides autism. I even prayed that he was "just deaf", figuring that I could deal with that. Anyhow his pediatrician told us to give it 6 months, basically wait and see. My wife and I decided that was not an option. Long story short, Jacob got a diagnosis of autism just before he turned 2. Since then Jacob has been receiving wraparound services for 5 years now and we also put him on the casein free - gluten free diet. Some of the improvements from the diet were almost overnight. Before that he was severely constipated, to the point of almost passing out when he struggled to go. Once we eliminated dairy, within a couple days he no longer had that problem. Also he is more focused and interactive. But I think that the biggest improvements came about because of his T.S.S. staff. He has had some wonderful people working with him, one girl who has been with him since the beginning. He went from being non-verbal to being able to speak in sentences, particularly when making requests. He still needs prompting often to get him to speak. I think sometimes that he thinks that we can hear what he is thinking or he thinks that he has already said it. Jacob now reads books, plays games appropriately, and actively seeks out others to interact with. True, he still has a ways to go but he has come so far from where he was. He is in an autistic support class in school (1st grade) but he is mainstreamed in more than half his classes, with the help of his T.S.S. When he first started getting services, alot of his treatment was ABA therapy, discrete trial, AVB, play therapy, and RDI. At times it seemed a little intense and exhausting for him, but once I started seeing the differences in him, I realized this was necessary. In fact I was so impressed with his therapists, I walked away from my job 3 years ago and became a T.S.S. myself and I currently work with four other autistic children. I can tell you that no two autistic children are alike, what works for one may have no effect on another. And just like any other profession, there are good therapists and bad therapists. Just make sure your therapist loves your child, even if your child sometimes runs away when the T.S.S. comes to the house. They often run or protest because they know they will have to work. And no matter how much progress your child makes, remember that though they may be autistic, they are first and foremost still children. And just like the rest of us they will have good days and bad days. I've also found that Mothers are most often the ones who deal with all the autism issues, seems that Dads don't handle this as well. Sad because a lot of these kids really need that strong male role model. A lot of autistic kids can benefit from the roughhouse type play that "typical" kids enjoy. Anything you do to engage your child can help. Sorry this may be long winded but there's lots to think about when it comes to this.

I'm new also and rather enthusiastic about finding this message board as you can see I've been posting like a mad woman. I don't know anyone else who has a special needs child and often feel very alone. But I know that I'm doing all I can to help my son. That's all you do, be the warrior for your child's cause and never quit. It's very tiring mind you especially as a single mom but the results are glorious. My son was not crawling, pulling himself up to stand , talking, taking steps etc. and thankfully I listened to his pediatrician (and not his father) and got him into EI and broke chops with the therapist when It came to the perfect match for my son. I went through 8 different therapists before we found the right match for each catagory of therapy and when that happened it was like a miracle how fast he started to walk, talk etc. (sometimes I wish he would just be quite for a change) But I wouldn't change it for the world. I 'd do the exact same thing over and over again because of the results I've had or rather he's had.

He's 4 now and in daycare he still has issues with his peers that I suspect is aspergers syndrome but considering how far he's come I can't really complain but I just keep on keepin on. He'll start back up with therapies soon and I suspect after the lapse it won't be easy but I'm determined to get him to be as comfortable in his world as he can be because what it boils down to is it's our jobs as parents to make sure no matter what that our children can live the happiest life they can with what they have isn't it?

Don't lose hope and know that you're right. Keep on pushing they are gonna cry and scream and test your limits in the beginning and you won't think you can stand another minute of it but it's all worth it in the end.

I pray that all of you have wonderful results like my son I pray that you all find angels like the angel therapists that helped my son. Mind you he's not 100% but every little accomplishment means he's one more step closer to living as normal a life as he can. I can't ask for anything else can I?

My thoughts are with you all and I know exactly what you're going through.