I need your stregnth, support, and advice

EI is coming on monday and im literally sick about it. I KNOW ds has autism. There are too many signs. I feel terroble and then feel terrible for being upset. At first i would cry and say i jusy want to be able go communicate biy now i know thats a lie. I want to go to sports games and tell him not to party too hard in highschool. I want my child to have every door in fromt of him and im just broken.

I love him and will do all i can to make the uphill battle eaiser but this just hurts so much.

I know autism is a spectum disorder and that a "diagnosis" doesnt dictate the future but i also know where he is lacking

I always wanted two or three kids but now i am not sure. Mainly because another child will take my time away from his developement but that kills inside too

I feel like a terrble parent and awful person and am clearly rambling here but i just feel alone.

Sorry for the rant but as the days go by i feel worse and worse

Re: I need your stregnth, support, and advice

The first thing I want to say to you is that if you do get a diagnosis, he will be the same little boy he is right now. The only thing that will change will be that you will get assistance in how to help him.

Also, if he is in EI, he is still SO young. I know it may not be comforting to hear, but you really have no idea what his life will look like in 6 months or a year from now, so try not to get too caught up in what things may look like ten years from now. My DS is 6 and was diagnosed 4 years ago and he has made great strides with therapy and intervention.

Never assume he won't be able to do anything. Sure, he may have limits, but it may just be that it will take him a little longer to do certain things. Some things maybe he won't master, but hopefully you will help him find his strengths.

I only have one child and in some ways I think it is easier, but in other ways it worries me. I don't think there is a right or wrong answer to whether you should have more, it's such a personal decision.

Good luck and hang in there.

Message edited 5/30/2014 10:24:48 AM.

Re: I need your stregnth, support, and advice

My Dh is ASD as well as my FIL, so when we decided to have a baby, I knew there was a huge chance that my child could be ASD as well.

Even knowing that there was a possibility of DS being on the spectrum didn't lessen the blow for me when the psychologist confirmed it. I felt just like you are feeling right now. I spent a good couple of weeks crying and feeling sorry for him. I was jealous of everyone that never had to go through this, I was angry that he was becoming a statistic. I would call up my mom hysterical because, what if DS ended up non verbal? What if he was worse than we initially thought? What if, what if, what if. That's all I could focus on.

Finally, after about two weeks of researching ASD on my own, and really looking at what ABA does, I found myself growing calmer.

I know it's scary and it's easy to fear the worst for our children. But like the PP said, my DS is exactly the same loving little boy he was three months ago when he was diagnosed. I was afraid ABA would change his personality, but truly, they've made him shine and brought out intellect we never knew he had. My DS is always so excited to see his therapists at the door, laughs and pulls them into his room to play.

ASD is a wide spectrum, so I don't know where your DC will land on it. But try not to think 10 years into the future or you will truly drive yourself insane. Take little steps. Think 6 months from now all the things DS can be improving on and learning. When you have your EI meeting, they will set up goals for 6 months from now (if he indeed gets services) and that's how you have to try and think. I found myself only focusing on 'what if he doesn't go to college/have friends/etc' and that's where I was going my craziest.

You are not alone, I promise you. You are your child's advocate and their voice and he is lucky to have you as a mom to make sure he's getting all the help he needs. How many people push something like this under a rug because 'not my child'. YOU are doing what is best, and I hope you realize that.

Don't tackle the more children question right now in the height of all that is going on. It's not a decision that needs to be cemented now. I say this because I, like you, have the same worries.

If you would like to talk, feel free to FM me. I am very open about my feelings and everything I went through before and after DS' diagnosis. I would gladly help you in any way I can.

Message edited 5/30/2014 11:54:18 AM.

Re: I need your stregnth, support, and advice

I remember this all vividly for us as well...5 years later. Please allow yourself to go through all of the emotions, they're natural. You will find your path and your way and your support system. I always liked this blog post from a blog called "diary of a mom" that I like to share.


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.

Re: I need your stregnth, support, and advice

Def follow Diary of a Mom on Facebook. I am not the parent of an autistic child, but my niece is autistic and it certainly affects the whole family. It is amazing how positive, but how real she is in her posts. Lean on your family and friends for support!!