Autism Spectrum Disorders

There was an opening with the Dev Ped yesterday so we were able to get Gavin in early.  The news wasn't bad, but it wasn't good either.  I just need a place to be honest with my feelings with all this and this is where I have chosen. I appeciate y'all bearing with me:

The diagnosis at this point is Developmental Language Disorder with atypical features.  Basically the doctor is not putting him on the spectrum and he is saying there is anywhere from a reasonable to a likely chance that he will be ok, but in the past 4 months he's seen no improvement and some slight regression and that has him concerned.  My gamut of emotions:

1) I'm ready to fight and do everything in therapy I can to help him.

2) I'm devastated.  My parent's instinct tell me there is a problem and I'm not so sure we can bring him back.

3) Guilt:  My boy has not been diagnosed yet and while withdrawn we still do get laughs and smiles and social eye contact etc. and I'm expressing all this to a group of people who have received diagnoses for their children and are acting much stronger and braver.

4) Depression:  After worrying for 8 months of pregnancy about everything that could go wrong for twins, 2 healthy beautiful boys are born and you have all these thoughts and dreams of the future...and not just the big stuff, just little things like them enjoying the story of bambi, not just pointing to pictures.  Seeing him have friends, seeing him have a relationship with his brother and they grow up and take the same classes together and all that.

Thanks for listening...I'm sorry if I come off too upset at such an early point.  I know most of you have been dealing with much more.

Hi! Welcome to the board -- I always feel that's such a bittersweet welcome, because no one really wants to have to be here but I want everyone to know that they are welcome here, to share their feelings, vent, ask questions, whatever you need to get through. So no sorrys are necessary!! This is what we are here for.

I know how discouraging and scary it is in the beginning, even before you know what exactly is going on. I think a lot of doctors are hesitant because the word autism is feared, and sometimes kids are stigmatized but otoh, a diagnosis is just a word, and if your son's getting the services he needs, you are on the right path. It doesn't matter what the label is if he's getting sufficient help, and you know as a mother what you need to do.

The guilt is a tough one. I think we all feel it at times, guilty for what we didn't notice earlier, what we didn't do, what we did do, etc. But, in the end, you can't let it run you. It's hard, it's sad to know we won't necessarily have the same experiences with that child that we wished for, but you will have even better ones, I promise. I have had to learn, and am still learning, that if my son is having fun running around by himself at a school festival, while all the other kids are together, I have to be okay with that. If he's okay, I'm okay. If he doesn't feel he's missing out, I shouldn't either. It's hard because we want them to do all those 'normal' things, but if they don't feel upset about it, why should we? Easier said than done, I fight it daily but it helps to remember that.

You are doing the right thing, venting, getting the feelings out, and using them to motivate you onwards and upwards. If he's still got eye contact and other skills, he may never lose them. Use them to continue to build on the weaknesses, and above all, enjoy him. He's the same sweetie he was before, and you will find ways to bring him the help to improve where he needs it.

Hugs to you,
Lily

Hey, many of us may seem strong and on top of things now, but we were all where you are when we started out. We're just further along in the journey.

Hold on to the positives your doctor gives you :-)

Thank You All...Not just for allowing me to express my feelings, but showing me that life not only goes on, but it goes on in a positive fashion.

A brief update.  We are going to have Gavin re-evaluated at a location near our home.  Not really hoping for anything different.  We know what the Dev Ped saw is there and we also know he is still too young for a full diagnosis.  However this place is much closer and has a team of therapists as opposed to 1 doctor so we can get more complete input.  Also Gavin's brother has some sensory issues and speech delay, though he does not have the social issues, but given how often this impacts both identical twins, we are going to get him checked also.

We had already started floortime. Going to ramp up and introduce VB.

Thanks again.