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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Hi, my name is Shenna and I'm new here...please be gentle :)

Posted by on Sep. 10, 2012 at 12:00 PM
  • 16 Replies
1 mom liked this

 

Poll

Question: What's the hardest obstacle as a Mom you've had to over come after hearing your child's diagnosis?

Options:

Fear

Anger

Guilt

The only supportive parent (or the only parent)

All of these are pretty much the same

No support from family or friends


Only group members can vote in this poll.

Total Votes: 13

View Results

I need to "let go" so I'm sure I will miss some details.

I'm at that moment, the one where you've always known something wasn't quite right, you researched learning disabilities and requested an evaluation. Today I talked to the school psychologist about the case conference on Thursday and she confirmed what I had been feeling all along. "Lydia has autism"

Those words are like an anvil to my heart. I can't understand why if all this time I thought it was a possibility, some how these floods of emotions are powerful. I'm angry, sad, afraid and good grief THE GUILT!

I know that I'm am going to do everything within my power (and then some) to help Lydia succeed and grow. She's in OT and on the wait list for Speech. The school (she started KG in July, first time at school ever) will be giving her speech therapy also.


(I'm not trying to stir the pot here, but please don't offer religious support... "I'll pray for you, God can do great things, Put your faith in the Lord"... that's not the person I am and it's extremely frustrating to me. Sorry, thanks in advance)

by on Sep. 10, 2012 at 12:00 PM
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Replies (1-10):
kajira
by Emma on Sep. 10, 2012 at 12:10 PM
2 moms liked this

You didn't have my option.

My husband is very supportive, I didn't feel anyo f the emotions in your list, but we HAVE had problems with extended family being willing to acknowledge the issues and support us.

I'm also an autistic adult, so I guess, because I survived to adult hood while being fairly severely autistic, but pretty verbal and no one catching it until I was an adult simply because I'm female, I felt pretty happy that I finally was able to figure out why my son was different, get us both diagnosed, and just move on with our life with a better understanding of our family unit.

I didn't feel guilty, or fear, though those are common feelings. I just felt relief.

then, I used my life experience of grownig up as one of those kids, to come up with a game plan to help my son so he can have a good life, and better childhood experiences than I did.

My husband has been so supportive, he loves us, he knew we were different, quriky, figured we were autistic, had no problems getting us diagnosed, and loves us regardless. when I flap like a bird, he laughs and hugs me and tells me I'm cute and being quirky is one of the things that make me so fun to be around.

My husband has been our #1 support system. He has had our back, defended us to friends and family, and helps create an autistic friendly environment that works for our family. He's so hands on with both of us to help us thrive - He enjoys the quirks that we have most of the time, and gets a lot of out being around us.

All I can say is find people like that. Who accept you and your daughter, people who will enjoy who she is. People who won't see her as broken. People who can see that she sees the world in a different way and while you make work on certain behaviors and teaching social graces so she can fake it, in her environment at home, let her be herself as long as no one's getting hurt.

Stimming, sensory stuff, flapping, a lot of those "weird" behaviors are expressions of feelings, of joy, of happiness... if you reduce those and take them away, you also lose an important way of communicating with her.

shennaann
by on Sep. 10, 2012 at 12:14 PM

Thanks for the comment, I will add another option. Lack of support from family and friends is a huge obstacle.

aidensmomma508
by Wendy on Sep. 10, 2012 at 12:23 PM
1 mom liked this

now you can get her more help and that's a good thing!  I know its hard to hear even if you know it already.  I went through many of the emotions your are going through. it does get better with time.  im thinking of you 

shennaann
by on Sep. 10, 2012 at 12:32 PM
Thank you so much for the support, it truly helps! I have to stay strong for her, if I don't I'm not sure if anyone else would.
JTMOM422
by Brenda on Sep. 10, 2012 at 1:03 PM
1 mom liked this

I felt exactly the same way when my son was diagnosed back in July. I felt like I was hit with a ton of bricks. I was lucky enough to already have an EI so she gave me some info and has helped out alot. You are doing the right things by getting her started in the therapies. Welcome to the group

emarin77
by Silver Member on Sep. 10, 2012 at 1:35 PM

I have support from my husband and extended family.  The first thing we asked after diagnosis was where do we go from here to get the educational/behavioral supports that our son needs to manage this disorder.  

RockinMama0608
by on Sep. 10, 2012 at 2:27 PM
1 mom liked this

I didn't vote because I didn't see an option that would fit my experience.

Honestly, I was relieved when I heard that my son had autism.  Surprisingly, I think that I handled it well.  I had to be strong for the kids and my husband (who was deployed at the time).  I have two cousins with autism so I was aware of the diagnosis and what it meant.  I think because of that, I knew what to expect.  Of course it is not a diagnosis you want for your child and I felt a little sadness for him, mostly because he is also deaf.  I was just happy to get a diagnosis so we can start implementing services to help him. 

I think the hardest part for me was seeing him become frustrated, hurting himself, and having meltdowns.  At times, I felt overwhelmed and stressed out.  Thankfully, this group helped me through the tough times and it has gotten better. 

Welcome to the group, Shenna!  Hang in there, it does get better!

badgermom2012
by on Sep. 10, 2012 at 2:54 PM
1 mom liked this

The hardest thing for me is not having support.  I don't have friends or family.  There are little services available where I live.  And it's hard dealing with people's daily ignorance and intolerance.  

momtoscott
by on Sep. 10, 2012 at 3:23 PM
2 moms liked this

 I need a "most of the above" option, because everything except the unhelpful spouse has been an issue with me at one time or another. 

However, I can tell you, 10+ years into our dx, that eventually you make peace with the situation and it is just...your reality.  The what-might-have-beens and sense of unfairness tend to fade away as your child becomes herself and flowers.  Not to say you aren't going to have to struggle or have a hard road ahead, just that it becomes your normal. 

When I was a kid in Virginia, we never had air conditioning and even in the very hot, humid summer, we were able to sleep, with the fan on.  Now I live in Massachusetts and cannot function without AC.  You get used to things and adapt, and then you can start to enjoy your life. 

Give yourself some time to process, though, and feel bad, because that's perfectly normal and natural. 

newmommy430
by Silver Member on Sep. 10, 2012 at 3:34 PM
1 mom liked this
I had a hard time choosing between guilt and fear. I feel guilty because I think that I caused it indirectly. (Genes, health, etc.). I also fear for my son's future.
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