Thank you Chris for doing this.
I'm a senior mom now,almost 78 and my Lisa is now 50,the term" autism" was not used when she was seen early on with delays in walking,speech( still non verbal) so it was a struggle looking for medical help,programs,so few then,therapies limited..
Then at 33 ,still home with us,and her autism,now termed " profound autism" has been very challenging to say the least! her first tonic clonic happened and then things really changed!!! Many hospitalizations ,tests,trials of aeds,meds for extreme behaviors, her personality changed sadly,..so much to write here but fast forward to 2024 and 2 surgeries to remove part of intestines,a very long rehab..today still many issues to deal with..
We did get wonderful help and guidance from a regional center coordinator and did make a heart wrenching decision to do a residential (6 bed) carehome placement,tho it took me a long time to research,but with mine and husbands health challenges ( husband cancer,I'm caregiver) and not much family around I had to do what I thought best for Lisa to have 2:1 staff, nighttime awake staff and now she has been with her housemates over 16 years,5 ladies there longer,lovely home..
They are wonderful caregivers,of my faith,have done trips, celebrating all holidays,birthdays and owner lives on property so her son now is coadministrator
Never say my guilt has become less but I know I can't do all I need to for her now..
My only other daughter has Ehlers Danlos Syndrome so I need to be supportive of her also,tho she has husband and gave us 2 lovely granddaughters..
Yes,this journey very difficult but I Trust in the Lord,always pray for all of our special children and have so appreciated help here with questions about AEDs,side effects etc plus belong to profound autism support group..
Thank you all and bless all of you!