Struggling with potential ASD diagnosis
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Anonymous
| I'm struggling with the fact that my 5yo will likely be diagnosed with ASD. Really having a hard time focusing and parenting to the best of my ability, and feeling isolated as it seems like all our friends kids are perfectly healthy. Any helpful advice on how to cope with this is helpful. |
Anonymous
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I feel you OP. We are in a similar boat. What I hold on to is that the diagnosis won't change who DD is. She is still the same child we know and love. And I have also realized that the notion everyone else has "perfectly healthy" kids is wrong. So many families have kids with special needs. DD has had other issues before and when I've mentioned them to other parents suddenly I learn about the struggles they have been having. For some reason I assumed DD was the only one.who had challenges and that is just not true.
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Anonymous
| PP you're so right. Thank you for this. |
Anonymous
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I completely understand. One thing is that there are tons of families of kids with special needs (of all stripes). And the connections and community you will have with those families will also be very strong; and the knowledge and lessons you learn will be so helpful in supporting others.
It does take time though--it's a grieving process of a sort--or of resetting conscious and unconscious expectations for what you had for your child and your experience as a parent. |
Anonymous
| Do you have advice on how to connect with other families? My child is still in mainstream classroom and I expect he may continue to be (with supports) but I have no idea how to find other families aside from blasting the neighborhood list serve, LOL |
Anonymous
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There are a lot of different ways:
-get to know folks who also receive special ed supports at your school -join local groups like x-minds or other family support groups for autistic kids -support groups (a lot mentioned on this board) for special needs families -waiting rooms for therapists (lots of parents in similar situations that you'll see regularly!) -I've also found that being open about having a kid with a disability with colleagues has also led me to discover many other families in the same boat. Lots of other ideas I am sure but that is how I've found meaningful connections! |
Anonymous
NP here but I found them at PTA meetings (other parents of kids w/ IEPs), facebook groups; and finally the special ed school my kid ended up at. Keep at it, we're out here |
Anonymous
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Your child will be able to tell you if they get pullouts with a group. When you talk to the parents you can mention your child's difficulties and if they want to share they will.
Have met a number of supportive parents this way. DD also has a good friend who has been getting pullouts with her but I can tell the parent does not want to talk about it so we have never talked about it. You could also check if the resource teacher could connect you. Sometimes the PTA has a special needs parent liaison. |
Anonymous
| Thank you all. It helps to know I'm not alone (and obviously I know that, but it often feels like it). DS is at a small private, getting private OT in and out of the classroom. I know his OT works with other students at the school but always assumed they were in a different classroom. These are all great strategies- thank you |
Anonymous
| It’s really tough and I hear you - I was paralyzed with fear for months before, during, and after the assessment period. An awful time frankly - and it was all really scary. We’re only a year after DX and I’m finally feeling confident again. I lost my sense of parenting for a while there - and had so many doubts. Time heals everything as they say and humans are resilient. You’ll soon accept and move forward - give yourself time to grieve and process it all. Sometimes we’re so caught up in the day to day and the therapies, etc. that it’s easy to loose sight of taking care of yourself. There are still some days that are hard and I am still accepting of the dx. I haven’t fully compared to my partner who was fully supportive and actually was the one wanting to pursue assessments. I was on the side wanting to know nothing and “wait and see”. That also created extra friction which we’ve worked past now but it’s all still very hard. The definitions the dx, what it all means for the future is daunting. You’re definitely not alone. My only outlet is my therapist and this forum for now. The other parents have mentioned some other ways of connecting to others but I’m not there yet. I’m not sure when I’ll “get there” for now I’m quite isolated and somewhat prefer that if that even makes sense. - parent of a 4 year old, dx with level 1 ASD @ 3. |
Anonymous
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op - many of us have been there. I remember crying my eyes out that night (ds was 7) and then waking up in the middle of the night over and over for weeks just trying to adjust. The hardest part for me was that the autism dx gives you so many unknowns, bc it's so broad now. Will my kid just be quirky or will they be profoundly impacted? It was terrifying and i felt overwhelmed as a parent.
What I will say is that the world has grown much much more open and accepting of neurodiversity and that will only increase as your kid gets older. By the time your kid is 25, autism will have long stopped being taboo, and there will be so much more acceptance and space created for those on the spectrum as we learn to better support them. Your child will continue to be who they are and grow in so many ways. and you are the parent they need - dont doubt yourself! and read read read and ask for help here. |
Anonymous
| Thanks Op, great advice. I certainly felt the same and because the definition has broadened so much it’s also very hard to know where things lie. I truly hope in years to come there will be less taboo and more acceptance… |
Anonymous
Thank you all- the above is exactly what I'm feeling- the unknowns of the future and long term outcomes is the most overwhelming. I agree society is trending in the right direction in terms of accepting neurodiversity. Given the world we live in I feel like it's hard to have hope but I'll try 
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Anonymous
pp - yes, and look - I dont know you and no one on this board has a crystal ball and our kids are all impacted in different ways and have different challenges and that is debated back and forth here every day, but what I will say is that my child is just as capable of making profound impact in the world and in the lives of others and having and receiving love as an NT child or adult. I mean that seriously, I have just as high hopes for him if not higher - even though he has a lot of things that are hard for him. Our job is to learn as much as we can so we can help our little humans understand themselves. AND our job is to deal with all the feelings we have about having a different kid than we imagined. And not to feel bad about those feelings, accept them, process them - and recognize that have a different path that will be hard AF at times but also in many ways amazing. You got this! |
Anonymous
| Yeah, my ASD kid makes my life a living hell. If I didn't have another kid I would have checked out long ago. |