The first thing I want to do is offer you a big hug...
The next thing I want to try and tell you is that what you are going through is SO normal. It's a stage, and you will pass through it, and there is hope at the end of it. If you can think of this as a journey, with various stages along the way, maybe that will help.
Surrender to your grief - yes, it is grief. You are mourning the loss of everything you expected for your child, everything you thought was going to be part of his life. You need to go through this process to let go of all that. My husband went through this, too. It's hard, and all I can say is this, too, shall pass. It's normal, necessary, but you will not feel this way for the rest of your son's life, I promise.
Another point I wanted to address is this idea of "comparing" autistic kids. Try to remember that they are all so different and you don't know what issues those seemingly "higher functioning" kids are dealing with. It's a cliche, but it's so very true: If you've met one autistic child, you've met ONE autistic child.
My son, at age 3 or 4, might have looked to you like he shouldn't be there. Until you saw him walk over to your child and try to claw his eyes out. Or saw him throwing a heavy block at someone, or shoving toddlers over onto their backs for no "apparent" reason. Believe me, I have looked at kids like YOUR son and thought "What would I give to trade some hand-flapping and poor vocabulary for this aggression?". Each autistic child has their own challenges, and some are simply more apparent than others'.
I can't address the funding issues since I'm in Canada and it's very different here. But I feel awful for you. No family should have to make health care decisions based on their personal financial situation.
The last thing I wanted to say is it does get better. You will form a new dream for your child, new expectations of what his life will be like. And you will find joy in that. You may even come to feel very proud of who your child is and not wish "normalcy" upon him, because you see that he has things to offer this world that other kids may not. But for now, just know that it's okay to feel how you are feeling right now. That it is normal. And that you will get through this, I promise. <hugs>
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Mama to DD14 and DS12, both born on MDC.
I didn't see your first post, but I want to send you a hug anyway.
Based on your thread title, I've been there. And I have had moments of feeling sorry for myself.
but everything has pros and cons
You are not a failure. We've all been there. You are absolutely entitled to feel sorry for yourself, be down, whatever. You're human. Be kind and gentle with yourself.
I read your original post last night, but I didn't have time to respond.
Big hugs. I understand what you are going through.
Your child is very young. It's impossible to say at this point what path his development will take or how impaired he will seem to be in a few years. It will follow its own unique path, with your love and guidance and with a lot of hard work by your son, you, and his teachers.
My son is 7 and has "high-functioning" autism. I gotta tell you, there are days I really hate the term "high-functioning autism". All that really means is that the child with autism is verbal and has average range intelligence. But lots of people, including teachers, seem to think that "high-functioning autism" ought to mean "mildly impaired". It doesn't. Over the past year, my husband and I have had to face the fact that our son is more impaired by his autism than we had hoped he would be at this age. It was a hard thing to face, but understanding that helps us to set more realistic goals and expectations for him. It doesn't mean that he won't progress or develop. It just means that we have to change our approach.
I completely understand your fears of the future. A lot of parents here do. It weights heavily on me some days, but to be honest, for the most part I try not to think about it. Maybe that's denial. Maybe it's just a need to focus on what I can do now and not "borrow worries". We are looking into setting up a special needs trust, and we have guardians for him appointed in our wills. Beyond that, we try to focus on building the skills he needs to function in daily life.
You sound like a great mom. You're just at a rough stage. Hang in there.
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)
I think it's probably a healthy kind of denial though, and I'd really like to get back to that place where I didn't think about the future so much. I've been trying not to, but then something will trigger it like something I see on TV or while we're out or some article laying out the statistics about how few kids with autism grow up to live independently, and I almost get overcome with sadness and fear thinking about the worse case scenario. I'm not really sad that he might not be typical. It's more a huge fear of him being left alone and vulnerable when we die.
I think that living in the present and dealing with what we have to today is healthier than obsessing on what might happen in the future. But I go through phases where I'm very concerned about the future -- freaked out and depressed.
At times, my DD has seemed very close to normal. And at other times, she has seemed extremely far away from normal.
And how I feel about the future is largely determined by how she is doing in the moment, even though we've been through these cycles enough that I know they are cycles.
So right now I'm fine with the future -- but I don't have any way of knowing for sure if it's because I've grown as a person and found the calm inside myself or it's just that's she's doing well right now.
I think that part of the problem with obsessing on the future when one has a child with autism is that you really can't tell what is truly a deficit and what will come along eventually with more time and therapy. Even though my DD is 15, we don't know how independent she'll be as an adult.
Does you son have guardians now if something should happen to your and your husbsand? If not, setting that up might give you some measure of peace.
but everything has pros and cons
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