Topic: Group for Parents of special needs children
proudmomof4's photo
Mon 01/21/13 09:01 PM
This is a great idea :) I am a mother of 4 and there's something up with each of my children... so if i can help out I'll try... :) I deal with a mixture of issues daily. I am completely blessed to have my angels :) my range is everything between defiance to autism to dyslexia to adhd to development issues to health issues.

lonelylady70's photo
Mon 01/28/13 08:50 PM
Have child who is way behind and has to wear hearing aids for rest of his life. am doing this alone no longer with his father some days are better than others. :smile:

no photo
Tue 01/29/13 04:22 PM
I just miss my kids but my hart goes out to you:(

no photo
Fri 02/01/13 10:55 AM
I'm a mother of a medically frgile son. We see so many specialists it's hard to keep track of them all. He has spent the majority of his young life in the hospital. For the first time in the three years of his little life he is living with me. Dad isn't much of a show so finding the transition more difficult then I expected. I'ts nice to see other parents out there. Look forward to hearing more.

njmom05's photo
Sat 05/04/13 07:37 AM
This is so beautiful! I had to share it here since I loved it so much on facebook, enjoy everyone!


"If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you...

If God had told me, "This soul would one day need extra care and needs," I still would have chosen you...

If He had told me, "This soul may make your heart bleed," I still would have chosen you...

If He had told me, "This soul would make you question the depth of your faith," I still would have chosen you...

If He had told me "This soul would make tears flow from your eyes that could fill a river," I still would have chosen you...

If He had told me "This soul may one day make you witness overbearing suffering," I still would have chosen you...

If He had told me, "All that you know to be normal would drastically change," I still would have chosen you...

Of course, even though I would have chosen you, I know it was God who chose me for you." by Terri Banish.

cvictor126's photo
Fri 08/09/13 10:54 AM
Hi. I am a disabled guy looking for a disabled partner for marriage.

Mystique42's photo
Tue 08/13/13 08:53 AM
Just thought I'd drop in to say hello! I'm raising my son with Down syndrome who recently was given a P.D.D. diagnosis. Anyone else have a similar situation?

tanyaann's photo
Tue 08/13/13 09:11 PM
ADHD with recent diagnosis of Autism Spectrum Disorder (PDD). It has been a rough couple years.

no photo
Mon 08/19/13 10:28 PM
I have two with PDD, in other words they are in the Autism spectrum. I find it effects my dating life more then anything else.


jinksb86's photo
Tue 09/17/13 11:47 AM

I wasn't sure if this one was done but I thought it would be nice to
have a support group for parents whose children have health issues,
therapy, and / or special needs.




I think this is an excellent thread to have started. I saw this and nearly jumped for joy!!!!



I am a single mom of two a girl, and a boy. My oldest, my daughter was born with a very rare condition called extrahepatic biliary atresia. She had her first surgery, called a Kasai, when she was ten weeks old. Then went on to have a liver transplant ten days before her first birthday. I call her my miracle baby, because I almost lost her three times before she got the transplant. She will be 6 in November, and we are 5 years post transplant. Ere are only around 300-500 cases diagnosed in the U.S. alone every year. There is no known cause, and the only treatment s are the Kasai, and liver transplant.... I could go on and on, but could take a while..... Glad to see this topic.

tanyaann's photo
Wed 10/16/13 07:36 PM
Welcome!



I wasn't sure if this one was done but I thought it would be nice to
have a support group for parents whose children have health issues,
therapy, and / or special needs.




I think this is an excellent thread to have started. I saw this and nearly jumped for joy!!!!



I am a single mom of two a girl, and a boy. My oldest, my daughter was born with a very rare condition called extrahepatic biliary atresia. She had her first surgery, called a Kasai, when she was ten weeks old. Then went on to have a liver transplant ten days before her first birthday. I call her my miracle baby, because I almost lost her three times before she got the transplant. She will be 6 in November, and we are 5 years post transplant. Ere are only around 300-500 cases diagnosed in the U.S. alone every year. There is no known cause, and the only treatment s are the Kasai, and liver transplant.... I could go on and on, but could take a while..... Glad to see this topic.

ApiphanySeason's photo
Thu 03/06/14 05:45 PM
Please tell me this thread is still active...it is exactly what I need...

tanyaann's photo
Thu 03/06/14 05:49 PM

We're still around..... say whatever you need to say!

PacificStar48's photo
Thu 03/06/14 07:20 PM
Glad to see this thread get bumped up because with so many new parents coming in I hope they can find the fellowship that is so precious.

I was wondering if any-one had any favorite books they recommended for a parent-professional library. I am going to be volunteering in one soon an like the parent feed back.

Would be awesome to see some useful phone applications that would be helpful. Technology should be our friend right?

This used to be the time you had to sign kids up for the Parks and Recreation Department Adapted Recreation Programs for summer; first come first served.

Great time for moms to start going through seasonal clothes and do a clothing swap at parents group.

Good time to swap or donate durable medical equipment you have outgrown. Way easier to do some of these chores before winter turns into summer.


Dodo_David's photo
Thu 03/06/14 08:11 PM
Folks, I used to be the step-father of a boy with a severe form of autism. So, I fully understand the difficulties of parenting a special-needs child.

ApiphanySeason's photo
Fri 03/07/14 09:05 AM


We're still around..... say whatever you need to say!


Hi Tanyaann! That is great! My son is 17 yrs old and the past few years have been really rough. He was diagnosed late with Aspergers (a few things happened in our lives that overstimulated him and he was unable to process so it surfaced like a volcano)...things have settled for the most part. The violent outburst have calmed. He still gets overwhelmed. Lots of in-home therapy. Its just been hard. I've been so absorbed in helping him and tending to my youngest daughter that I have just shut down socially...I am trying to venture out again...keyword...TRYING

Dodo_David's photo
Fri 03/07/14 09:14 AM



We're still around..... say whatever you need to say!


Hi Tanyaann! That is great! My son is 17 yrs old and the past few years have been really rough. He was diagnosed late with Aspergers (a few things happened in our lives that overstimulated him and he was unable to process so it surfaced like a volcano)...things have settled for the most part. The violent outburst have calmed. He still gets overwhelmed. Lots of in-home therapy. Its just been hard. I've been so absorbed in helping him and tending to my youngest daughter that I have just shut down socially...I am trying to venture out again...keyword...TRYING


Apiphany,

I definitely know what you mean about having to shut down socially. Back when I had my autistic step-son, I rarely left home because nobody would/could babysit the boy, and it was a nightmare to take him anywhere.

Does your son need a strict routine in order to remain calm?

ApiphanySeason's photo
Fri 03/07/14 09:30 AM




We're still around..... say whatever you need to say!


Hi Tanyaann! That is great! My son is 17 yrs old and the past few years have been really rough. He was diagnosed late with Aspergers (a few things happened in our lives that overstimulated him and he was unable to process so it surfaced like a volcano)...things have settled for the most part. The violent outburst have calmed. He still gets overwhelmed. Lots of in-home therapy. Its just been hard. I've been so absorbed in helping him and tending to my youngest daughter that I have just shut down socially...I am trying to venture out again...keyword...TRYING


Apiphany,

I definitely know what you mean about having to shut down socially. Back when I had my autistic step-son, I rarely left home because nobody would/could babysit the boy, and it was a nightmare to take him anywhere.

Does your son need a strict routine in order to remain calm?


Absolutely! That is one of the things that turned everything upside down. While I worked and went to school, my mother took care of him and home schooled him...well she passed away. Soon after, I ended up being able to work from home, in order to maintain the much need stability...but more things happened...including the birth of my daughter. It was scary for him....his adjustment has been very gradual...and at times very trying. There is just the never ending upheaval for him...like as of Wednesday, he went to his ADT and they went on an outing. He went to the bathroom and came back out...the staff had drove off and left him. So know now we have backtracked to the "abandonment issues" (after my mother passed there was a huge series of disappoints from every angle it seemed)...so now we are working through this. It is hard to provide the stability they need, when life is just not like that...

ApiphanySeason's photo
Fri 03/07/14 03:43 PM

Ive been so lucky. I found a group of mommies of kids with aspergers and autism, and we share things that have worked for our children. We also share things that work for ourselves, particularly the isolation while we tend to our children.

We use vetiver for the outbursts. If its bad, you could give it a try. Everyone responds differently to everything, so its all with a grain of salt.

J will be going to college next year, majoring in engineering and computer science. We were at the open house last weekend, and it seems that there will be a few other aspies around. Not so rare, in that setting, as Im sure you will understand.


That is what I am looking for and finally making time to make it happen. Just people that understand. Its not something you can really explain to someone who has not experienced it firsthand.

Is Vetiver a prescription? He is currently on Celexa & Triliptal. He was fine on them for almost a year but now he is sleeping more & gaining a lot of weight.

Yes, I am sure. My son is quite intelligent when it comes to his computer. That is where he does his form of "stimming".

tanyaann's photo
Fri 03/07/14 03:54 PM
My son got aspie dx this past year about a year after his twin sister's were born. I never quite understood that I was providing him with such a structured environment.... I just knew he was 'difficult'.

He was dx with adhd at age 6.

My son is currently on Vyvanse and Strattera. I think that Strattera has made a difference.... and less objects are flying around the house and if he has a melt-down it's usually for less than an hour. Where in the past, his meltdowns could last 2-4 hours.

I am glad that you came here for support. There are also some really good groups on Facebook.

I think one that I am on... is called Asperger Awareness. They share a lot of great information and support.