State: Ga
Country: USA
Member since: Apr 29, 2008
Last logged in: Oct 26, 2008
Hi, I am new to autism and am on a journey to help my son be the best version of himself.
My name is Melissa and I am 33 and married to a wonderful and supportive man named Kevin. I have a step son Taylor who is 8 and a little boy Will who is 22 months old and has Autism. Will is in the inital stages with Babies Can't Wait. He has started Speech therapy and will start Occupational therapy soon. We have started with our DAN! Dr. Sloan and are starting GF/CF and some supplements.
Right now Will has 1-2 words depending on the day. He has some sensory issues (Tactile, Vestibular, proprioceptive, and taste). He has temper tantrams, doesn't sleep, and loves to bang his head. But he is the greatest little boy. He is great at figuring out how to turn things on and off, getting into the smallest places, and making you laugh! He has such a sweet heart!
I am trying to learn as much as possible to not lose precious time!
I try not to focus on the cause of his Autism but I like the saying.... Genetics don't cause Epidemics.
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minnakay's Compositions
by minnakay on 06.23.08 - public - 120 visits
We are in the beginning stages. Our appointment is finally here (after 4 months of waiting) to get an evaluation on Wed. I don't think they are going to tell me anything I don't already know. Will is autistic. Everything I read points to this.
We have met with Babies can't wait and are about to start Speech and OT therapy and I have asked for Music Therapy.
I'm reading the books, about to start GF/CF. Meeting with the DAN doctor soon (as soon as my checkbook has some money in it)
All the things you have all been through. What I can't shake is this feeling that I am not farmiliar with. I'm sad, yes, but I feel incredibly alone. I feel useless (I don't feel like I even know HOW to play with my own child), I don't know what to expect.
As many of you have said my friends with NT kids have gradually all dissappeared. My family is "supportive," but have their own kids to take care of and would help if they knew what to do?? Although I think watching Will scares them.
I am planning on attending some meetings when I can, I have never left Will with anyone but my mom and she is not available.
How do you make sense of your feelings and move on with what you need to do?
Just looking for some advise and I guess someone to tell me they have been there and it is going to get better.
Comments(9)
Anamcara
Posted on Mon, 23 Jun 2008
The previous posters are correct, Melissa, in saying that you're going through a grieving process... this is a huge change in your life, in dreams, hopes, and even in simply coping with daily "stuff." The only way around it is through it, and through all the stages necessary to get to the other side. That includes sadness, fear, loneliness, anger, and eventually, acceptance - not necessarily of the lack of what's available or of what people say to you about your child, but of the fact that this is what it is. Unfortunately, people who have neurotypical children don't have any concept of what we deal with, so your best bet is to find those who do. Check the Autism Society in your area - the meetings I know of include childcare by people (usually other parents) who are where we are and can cope with our children. Find other parents through developmental preschools you can swap time/playdates/stories with. And do find and hold fast to your faith. You are NOT alone. And you are most certainly not useless! You are the one who knows your child best, in spite of what you think. You are the one who can listen with your heart when he talks with his, and truly "hear" your child. As far as your husband goes, many men react that way because they prefer to be in a "fix-it" mode, and deal with their emotions through action. Both approaches (emotional and practical) have their benefits - find how to make them fit together. Have a good cry... have two or three :) You're entitled. Do that, and then put it away for a while and focus on sorting out the wheat from the chaff in what needs to be done. You'll get there. It's a lot like a 12-step program...maybe one day at a time, maybe one hour at a time, sometimes just 5 minutes at a time...but you'll get there. And this community is here to help. We'll listen...and some days we'll cry with you, some days we'll tell you to "buck it up" (tough love!) and some days...even if you don't believe it now... some days, we'll even laugh with you. Promise. Marney
KevinLivsDad
Posted on Mon, 23 Jun 2008
@minnakay - Shannon's right get in with the other ASD parents. Because they are the only ones that really know & can remotely understand. Yes, you are grieving & I think most all of us do it. Look up the stages of grief online. You will go through all the stages just let it happen. But, as hard as it may be like your husband said don't let it consume you. Sorry, I am a man & that is what we do & think. Good luck kid & you will find support here.
noaholiviaian
Posted on Sun, 22 Jun 2008
I forgot to add: you look like a really cool family. I love the dogs.
noaholiviaian
Posted on Sun, 22 Jun 2008
How do we cope? Honey, I'll bet all of us were right there in that same spot when our kids were regressing or being diagnosed. We coped just as you are coping... learning, getting angry, talking, getting angry, making a plan of action, getting angry (well, maybe that was just me). As time passes, you will feel more and more comfortable and competent with these circumstances. Pretty soon you'll start talking about Will's progress and not his diagnosis. You'll get there; and we'll be here to cheer you on.
Motherof4
Posted on Sun, 22 Jun 2008
I think you're grieving. I've been there, too. The sadness and aloneness are part of the package, and you only get over it when you yourself are over it. There's no right or wrong way to feel right now, and you have the right to feel whatever you feel. These are the hardest days, the beginning ones, and life really does get better from here. You are not useless, you just feel that way now. Will needs you and you are doing a great job preparing yourself for the next phase of his journey. Hang in there. We've been there, too, and we're pulling for you now.
shannonj
Posted on Sun, 22 Jun 2008
You are not alone at all....In the beginning years with my son, I had several other moms on speed dial who had kids on the spectrum as well. They were my lifeline because they could understand like my other friends and family couldn't. It helped me just to process every thing out loud with someone else....and I still do. If you ever want to talk, post me a message and I'll pass along my phone number....
saveseraphine
Posted on Sun, 22 Jun 2008
Hi Melissa, You're not alone. I've been there as well and it's the hardest and most heartbreaking experience I've ever had. Getting to the point of even asking for help or for a diagnosis was difficult because I wanted to stay in denial. I did everything you're doing now. I was very proactive, read books, researched through the internet, etc. I was terrified of the word autism, but once I accepted it I felt I had some direction especially after I read about recovery stories. I knew I had to give her disabilities a name if I was ever going to be able to "fix" them. Things become easier if you allow yourself to cry every so often. There will be feelings of hopelessness at times, but any milestones that your child does achieve will bring you more joy than you can ever imagine. I knew my daughter had autism when she was 2 1/2. She's now 4 and continues to make strides. I still cry every so often, but I have these incredible memories that would have just slipped by if she were neurotypical--- the first time she asked me a question, the first time she greeted me good morning, etc. The one thing that's carrying me through all of this is my faith in God. No matter how difficult life with autism can be, and now matter how many times I question WHY MY DAUGHTER?! or WHY ME?! I have to believe someone so much wiser and loving than I has everything in control. Write me if you'd like. I've been there and I'm willing to listen. Vivian
4muskateers
Posted on Sun, 22 Jun 2008
know is half the battle, now you can plan your strategy...you may want to read the book Just Enough Light for the Step I Am On...by O Martain...it is a good book to read for the spiritual support we need. things do get better, and there will be many bumps in the road ahead, but know you will have a road map to go by and will be reading for all the bumps big or small...Ask away and I'll answer and if I can't I'll find you an answer...God has me sharing for a reason...just remember I do all I can on a poor man's buget, all natural and with great success...So if you can be trusting, I will do my very best to be as helpful as possible. Love Diana
