We saw the developmental pediatrician this morning...

It's PDD.

I'm sitting here in tears, I can't stop. I knew it, I knew it was coming but it doesn't make it any easier. DS is taking a nap now and my 9 month old is crawling all over me and DH had to go to work (he could only take the morning off for the appt). I'm all alone and I just want to crawl in a hole and die.

I know it doesn't make him any different than he was yesterday but now I feel like we have this....sentence. We went to lunch afterwards and were next to a group of people who were talking about where their kids were going to college next year and I lost it...DS may never go to college, or have real friends, or have a girlfriend, go to the prom, get married... I know I'm getting ahead of myself here but I feel like I'm mourning the life he may never have. This is the worst day ever. I feel like when he was born I instantly envisioned his life, not specifically but just all the possibilities, the world at his fingertips, you know? And now.....I know. I know there are people out there who have it much worse than us but i just feel like screaming at the top of my lungs and running around like a f@#$ing lunatic kicking and screaming why us? Why my sweet amazing, innocent liitle boy?!?! Why him??

This succks, life really f@#$ing succks.

Re: We saw the developmental pediatrician this morning...

Re: We saw the developmental pediatrician this morning...

Re: We saw the developmental pediatrician this morning...

Re: We saw the developmental pediatrician this morning...

Many . It is not news that any parent wants to hear. But you are not alone, and finding out is the worst part.

Take it a day at a time. Autism Speaks has a First 100 days packet you can look at or request which is helpful.

Re: We saw the developmental pediatrician this morning...

It does suck, and I am so sorry you received this news.

I read this long after we got the diagnosis, but I still click on it from time to time because it usually makes me feel better.

Welcome to the club

Re: We saw the developmental pediatrician this morning...

Posted by cjik

Many . It is not news that any parent wants to hear. But you are not alone, and finding out is the worst part.

Take it a day at a time. Autism Speaks has a First 100 days packet you can look at or request which is helpful.

Re: We saw the developmental pediatrician this morning...

Re: We saw the developmental pediatrician this morning...

I remember that awful day myself and I know there's no words for it but your right it does s*ck. Give yourself time, afterwards when your up for it research and see what will work for you- thearpy, support groups-etc., There's many of us out there and I know this is so hard to swallow. One day at a time...hugs and remember it's ok to vent!

Re: We saw the developmental pediatrician this morning...

Re: We saw the developmental pediatrician this morning...

Re: We saw the developmental pediatrician this morning...

I also remember that day for us too. And all that lead up to it. And all that has happened since.

I posted this a few months back. It was from a blog called "diary of a mom" and was on the autism speaks news feed one morning on facebook and I think it is really touching. There are many of us here to lean on. Please lean on us. We really do need to get together. I know i haven't responded to your FM but I will. I'm here to talk whenever...

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

With love,

Jess

Re: We saw the developmental pediatrician this morning...

My DS also has PDD. Please FM if you want to chat!

Re: We saw the developmental pediatrician this morning...

Re: We saw the developmental pediatrician this morning...

I feel your pain. It feels like Simone punched you in the gut.

Re: We saw the developmental pediatrician this morning...

Posted by dpli

It does suck, and I am so sorry you received this news.

I read this long after we got the diagnosis, but I still click on it from time to time because it usually makes me feel better.

Welcome to the club

Re: We saw the developmental pediatrician this morning...

Re: We saw the developmental pediatrician this morning...

Thanks everyone. We're still kind of in a fog over here.

I emailed his EI coordinator to let her know so I guess tomorrow when I hear back from her we'll start a new and improved game plan of his services....I'm hoping they don't give me too much trouble.

I know I'm going to have a ton more questions so I hope I'm not too annoying in the next couple weeks. I just want to make sure we have all our ducks in a row for DS and you guys have already been such a wealth of information....too bad it's information I wish I never needed to know.

Re: We saw the developmental pediatrician this morning...

Posted by ruby

Thanks everyone. We're still kind of in a fog over here.

I emailed his EI coordinator to let her know so I guess tomorrow when I hear back from her we'll start a new and improved game plan of his services....I'm hoping they don't give me too much trouble.

I know I'm going to have a ton more questions so I hope I'm not too annoying in the next couple weeks. I just want to make sure we have all our ducks in a row for DS and you guys have already been such a wealth of information....too bad it's information I wish I never needed to know.

Re: We saw the developmental pediatrician this morning...

Just wanted to give you hugs.

I know exactly how you feel. It's not PPD for my child, but another major issue that we only found out about recently.

Just wanted to let you know you have a shoulder to lean on here...

Message edited 10/24/2011 8:42:54 PM.

Re: We saw the developmental pediatrician this morning...

The diagnostic is devastating. You go from silly arguments with DH about how old your child will be allowed to date to ever wonder if your child will be able to function or even live on their own someday. I cried for OVER 1 YEAR. I could not even talk about how we found out without crying because that time is so painful in my life. Most painful that any other time.

It does get better! You will cry less and less. Until you are just so used to it. OK...You never really get used to it completely . Others will make sure you never forget. The stares, etc.. But YOU will learn to deal with them. New age stages, new challenges. But you go through them. It's hard but you will find yourself so strong because YOU HAVE TO!!!!!

DS was diagnosed almost 3 years ago. Our lives changed FOREVER.

But I will say, while it STILL SUCKS, that we do get into a routine around it. Routine for DH and I. DS gets better in some areas and not in others.

DS is fully autistic. He is CLUELESS. The stress has been on DH and I. And now that he is getting older, it is completly obvious that he is autistic or for most people that "something is wrong with him".

But luckily DH and I grew stronger together and stick together.

It is stressful and many marriages don't make it through the challenge but you grow stronger and find new strength you never new you had.

The beginning is hard. A real grieving period. When you feel up to it, join a support group. I promise it helps.

Re: We saw the developmental pediatrician this morning...

:hugcry

I was in your shoes in March last year...i remember your pain well...

What helped me was talking to people who have been where you are...until i spoke to other people who have been there...i was then able to fight for what my son deserved...

He will be 4 on Sunday...when we got the dx, he wasnt talking, not potty trained, not eating by himself...in one year he started doing all these things...

One day at a time...

Anythinig is possible!

XOXO