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Welcome Panel - Shared screen with speaker view
Rebecca Wiesenthal
00:39
hi
Michelle
01:06
I’m here :-)
Michelle
01:26
should i sign out and use the link in the email?
Mary Cardle
02:20
I missed the dancing, but I have a broken leg anyways lol
Mary Cardle
08:05
So nice to meet all you ladies!!
Rebecca Wiesenthal
11:37
Do any of you have more than one kid with issues? Does anyone's husband have issues as well?
Krista Perleberg
17:23
“Wearing makeup”😂
Mary Cardle
18:01
lol Sinead you and your potty mouth. Cracks me up
Mary Cardle
19:17
Melanie, yes! If someone told me before I had my daughter that my one and only child would have Down syndrome, I would have said "no thanks."
Mary Cardle
21:53
omg a doctor said that?? your child's head will dislocate. Ugggh that is awful
Amy Purling
35:20
I have had two premmies
Rebecca Wiesenthal
41:14
does anyone's husband have issues as well?
Blair
42:14
Does anyone have the additional stress of feeling like your partner isn’t as involved in your Childs care and appointments?
Tam
44:47
my otherhalf is trying to. et an ADHD diagnosis after our 5 year old was recently diagnosed
Rebecca Wiesenthal
44:51
my husband was diagnosed with Autism a few years after our 2 boys were
Heather Cox
46:03
Autism can be genetic too :-)
Rebecca Wiesenthal
52:43
I was diagnosed with depression, however when I was diagnosed, my doctor said he would be surprised if I was NOT depressed
Krista Perleberg
53:12
It’s actually cool to be in community with others who deal with g-tubes. Often feel like the only one locally. And the discussion of profound or severe multiple disabilities-also lonely
Jean Ricamata
57:22
Since now that we are in pandemic, some parent with differently Abled kid cannot afford online therapies, what is the words of encouragement that you can tell them or any sort of advice
Leah Silverman
01:01:46
I love all you ladies so so much. I’m crying over here, but not in a bad way...your words are lifting me up and making me feel so NORMAL. THANK YOU it feels so good to feel heard and seen
Heather Cox
01:01:56
I heard from some mums of chiIdren with speciaI needs that they feIt isoIated before COVID and that it gave the rest of the worId some understanding of that feeing and they didn't feeI so aIone, it was interesting!
Krista Perleberg
01:03:01
Good question-definitely have anxiety about reopening
Amy Purling
01:03:33
It's so different here in Australia and battling my eldest starting school as well as daily in-person therapies or appts or tests and his naps etc is hecticcc!
Amy Luke
01:04:12
All of this. I’m petrified for Derek to get sick again ❤️ So much anxiety
Tam
01:04:58
Amy, same boat with miss 5 being at school and trying to navigate starting going back to therapies, appointments and then adding Uni on top of that... covid was the best year we had health wise and I'm terrified to get Penelope back out into the community going into winter.
Theresa Torres
01:05:29
Sinead-I had the same experience with anxiety. I had a panic attack three times and was scary. Our mental health is so important especially when we have children with special needs. My son has DS and ASD. I FELT SO ALONE and isolated. I'm thankful to have found this group and webinar in IG
Stacy Harris
01:05:57
Feel this on so many levels. I had no one last summer with a newborn. I called my Sister, Thank God for her at the time.
Mary Cardle
01:08:22
My daughter also has the dual diagnosis of DS and autism and it's hard
Theresa Torres
01:08:41
Tam & Amy-I understand how you both feel as I too am terrified to get my son back out into the community as he's high risk for respiratory issues
Theresa Torres
01:09:24
Hi Mary-yes it's very challenging with dual diagnosis with our kiddos. How old is she? My son is 5
Melissa Goulet
01:10:16
Im on my third therapist in three months. Its hard to find a good fit for "special needs parenting". The last one told me I sound like my sons (DS and ASD) caregiver not mom and that is sad and lonely.
Theresa Torres
01:10:38
This is making me cry!! As I feel not alone with these experiences
Rebecca Wiesenthal
01:11:19
We have 4 boys, 1st and 3rd - Autism, ADHD, Sensory Processing Disorder. 1st son also GAD, and 2nd son JUST diagnosed with depression. My husband was diagnosed on the spectrum after the boys, and I have been dealing with depression for years. 4 boys between 20 & 15
Amy Luke
01:11:34
You are NEVER alone Theresa! We are all in this together ❤️
Melissa Goulet
01:11:36
Im on my third therapist in three months. Its hard to find a good fit for "special needs parenting". The last one told me I sound like my sons (DS and ASD) caregiver not mom and that is sad and lonely.
Theresa Torres
01:12:14
Thank You Amy!
Chie Gatchalian
01:12:56
I used to think I needed to put my son in therapy day in day out- including his down time with me - and I failed to enjoy him. I’m glad to have found balance. Our kids are also just like any other children. Hugs to all you beautiful mamas out there :) You are not alone.
Amy Luke
01:13:40
I’ve definitely stop doing all the the things at home and have let him do more kid things and he’s really doing great ❤️
Theresa Torres
01:14:40
Melissa-I understand you as I too am looking for a therapist that is a good fit for special needs parenting
Heather Cox
01:14:51
I did the same Effie, a facebook page for my rare girI so I don't have to keep updating everyone and they can support me :)
Tam
01:16:33
My in laws and family don't really believe in western medicine and don't understand our daughters condition.. they just distanced themselves from her.I just updated on Instagram/Facebook and anyone that wants to stick around and care for Penelope will make themselves known
Mary Cardle
01:16:46
Teresa, my daughter is 8. She was diagnosed at 5.5 years old
Krista Perleberg
01:16:56
I’d love to find a therapist for me. But it’s so difficult to find someone who cares/gets it. Most of the other parts of my life are good to okay. But being mom of special needs effects other parts of me. When a therapist touches on a good part, though, they’re like, sounds like you’re doing good. Thanks for coming. See ya! And bcse I feel dissed now, I don’t try again.
Theresa Torres
01:16:57
Sinead-I agree-I lost close friends b/c of my child's disability.
Ashley Z
01:16:57
Amber, where did you find the strength to get a divorce with everything going on? I think I'm headed in that direction and to be frank I'm scared shitless to do this is as a single mom & be in a high level job with all the therapies & advocating.
Jean Ricamata
01:17:02
There are times that I feel guilty as a mom of my daughter, because I can't give her all the intervention that is "needed" because the lack of resources. Or sometimes I am so torn between motherhood and juggling career. Thanks for this event for enlighten me
Theresa Torres
01:17:37
Thanks Mary. My son was just diagnosed with ASD last month at 5
Mary Cardle
01:18:02
Teresa we can conncect privately if you like. :)
Theresa Torres
01:18:26
Yes Mary! I would love that
Heather Cox
01:18:49
I address the eIephant in the room but I aIways Iet peopIe know her capabiIities, not just the IabeI. Yes, she's taIIer than most, spent a Iot of time in hospitaI and finds some things harder than other kids, but she's super capabIe and thriving.
Mary Cardle
01:18:55
you can find me on messenger by my names maryCardle
Theresa Torres
01:19:18
Will message you Mary
Melissa Goulet
01:19:28
Thanks Teresa <3 Nice to know Im not alone!
Mary Cardle
01:20:22
I think all of us with kids with different needs it makes a huge difference to know that we are not alone, regardless of what your child's diagnosis is.
Theresa Torres
01:20:28
Melissa-I'm still in search for another therapist. I've been to one but not as helpful as I still have anxiety and panic attacks
Theresa Torres
01:20:46
Agree Mary!
Heather Cox
01:20:49
Oh for sure it's a thing for many of us! I have undiagnosed PTSD I am sure. Anti-Anxiety meds I have been off and on too at times.
Kassandra
01:21:59
I have been diagnosed with PTSD due to a very traumatic event with my daughter at 6 weeks old and her first seizure.
Melissa Goulet
01:22:18
Theresa - its so hard. Im two appointments in with a new one and hoping it works. They work with ASD families so trying to stay hopeful. Im currently 26 weeks pregnant and experiencing depression that is worse than the post partum depression I had with my other two sons.
Megan Libassi
01:23:05
I did EMDR to deal with trauma after my son with Down Syndrome was born and I truly didn't heal until I did that
Theresa Torres
01:23:50
I'm so sorry Melissa. This must be so hard for you.
Chelsea Monroe-Calderon
01:24:02
Same here. I recently read that parents of medically fragile children have PTSD very similar to soldiers at war.
Crystal Smith
01:25:05
I've been told I have CTSD, Neverending trauma and always being on edge.
Amy Luke
01:25:39
I love that Effie!!!!!!
Mary Cardle
01:26:22
I have one friend who's also a single mom, and her daughter has a very rare diagnois and told her to check out Effie's podcast as I can't imagine what it's like to have a child with such a rare diagnosis and having no one, but we see each other and hang out
Jeni
01:26:48
this is so helpful. i love these ideas Thank you!
Melissa Goulet
01:27:25
Amber, that is amazing! Im definitely doing that!
Amy Luke
01:27:35
Love that sooooo much!
Theresa Torres
01:27:44
Yes-great idea Amber!
Allison
01:27:46
These are all great ideas!
Mary Cardle
01:27:55
yes definitely wine!!!!
Amy Luke
01:28:03
YES to wine!!!!!
Theresa Torres
01:28:06
Wine is a staple for me!!
Amy Luke
01:28:14
And all the reality TV ❤️
Theresa Torres
01:28:50
Yes Amy-mindless shows
Tam
01:28:52
I posted in the q&a but I'll post here quickly aswellare there any other rare disease panelists ? It will be 12:30am here for that yoga session 😅
Mary Cardle
01:29:29
I love Effie's idea of self care with the 4 tanks. I think that's also a great visual and reminder throughout the day
Michelle Aventajado
01:31:42
Me too. I love the 4 tanks…
Lyndsey
01:32:33
thank you all so much!!
Mary Cardle
01:32:47
thank you everyone! I look forward to tomorrow. I'm even going to try the yoga with my busted foot and leg lol
Byron Kidd
01:32:49
Thank you all so much! This was great to hear and excited for more to come.
speckledalder1
01:32:54
thank you! loved this char
Theresa Torres
01:32:56
Thank You!!