Please give me a reason to stop crying

We recently learned our 2 year old DS has autism. I have cried every day (though not all day) since. DH is beyond depressed about this.

In all of the reading I have recently done about autism, it has been hard to find any "bright side" to the condition. But there are so many kids with autism these days, and some of them are doing well, and grow up to lead "normal" lives, that there must be some sort of bright side or silver lining... right?

Before we knew DS's diagnosis, when we thought he was just a "normal" kid with a speech delay, I took him on playdates, to music classes, and mommy-and-me classes. Now he is going to have over 20 hours a week of ABA therapy, and I am not sure there is time for these other activities. It makes me so sad. It makes me even sadder to think that a year from now his therapy will be away from our home, all day, every day.

If anyone can share a bright side or a silver lining to a child's autism diagnosis, please do. Please give us a reason to stop crying. My boy is so sweet and has a great smile, and we had such high hopes for him. I would like to continue to do so. He is starting to pick up on our sadness and smile less, and that breaks my heart too.

Re: Please give me a reason to stop crying

Getting that diagnosis hurts like hell. Seeing it on paper is like being punched in the stomach, repeatedly. That being said, he's still your beautiful little boy! You are doing the BEST thing you can for him-getting him services early! Early intervention is the key!
It's so cliche but it will get easier...

Re: Please give me a reason to stop crying

I'm so sorry that you're going through this...many many hugs

Many of us have been there. Give yourself the time to process and grieve. It's normal and expected. You're going to learn so much over the next few weeks and find strength you didn't know you have. I am going to copy a letter that once was published on the autism speaks blog that was meant to be from one parent to another whose child was just diagnosed:

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

Please give me a reason to stop crying

Lots and Lots of hugs to you.

my DS is now 5, and he was DX at 15 months old. i want you to know that recent people whom i have met, have told me, from an outsiders view, you would never be able to tell he was Autistic.

AJ started with almost 40 hours a week of services (ABA, PT, Speech, OT & School) we didn't have time for extra circular activities, but in all honesty he didn't need them at the time. we had tons and tons of playmates with his NT friends at the house with therapists to help him cope, interact and handle large crowds (i would have up to 10, sometimes more kids at my house)

for us the key was EI, get as much as you can now and overload him. if you knew AJ back then and then see him now, the change is amazing.

don't try to shun your friends with NT children. your DS will learn from them, try to have play dates with them still, park, mall, etc.

20 hours may seem like a ton of hours, but with learning how to juggle the different therapists, you will see you still have a ton of hours left in the day.

if you need to talk you can FM me...

we as parents see every quirk they do, but most people do not.

Re: Please give me a reason to stop crying

I know what you are going through. I felt like my whole world shattered when my son received his dx at 18the months. He is now going to be 6. Does it get better? YES!!! Will it always hurt..yes. my son has come so far. So i always look at what he can do and NOT what he cant do. He has atwin brother who is typical. That is the best thing for him, because he copies and imitates him. So keep your son around typical kids as much as possible. Im not going to lie, but life is hard with a child with autism. But you and your husband have to be his best and number one advocate. If you need anything...we are here for yoy

Re: Please give me a reason to stop crying

Thank you everyone!

Re: Please give me a reason to stop crying

Having 2 out of 6 with ASD I still have no magical advice. Hearing that your child is on the spectrum is awful. Thankfully though there are so many more ways to overcome it vs years ago. Take all the therapies you can, I promise you, even though it takes up so much of your time the earlier ABA is started the better. You will look back one day and be able to see the progress. I know it's so hard right now, I can remember wanting to fast fwd their lives just to see where there at in 5 years. I think alot of us feel that way. Try to stay focused on the present, keep doing what your doing-outings, playdates and such, and get support! It takes time but you will see how things fall into place. Yes it's a different way of learning but so what..if it makes the most out of a child it's all worth it.