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I Respect The Special Needs

I read a very good article about the Parenting of Special Needs Children. It was interesting to see what some Parents wrote about how exhausted they are, how this has affected their lives, their habits and the rest of their Family life. A few Women wrote some comments at the bottom about their reality of being a Special Needs Parent and it can be gut wrenching too;

Quote from One Mom; This a good article right up until they started talking about ‘just’ taking time for yourself. That’s nearly impossible for most ASD parents. Not only do you need a babysitter with specialized training but YOUR OWN kids have to get used to them and feel safe. That requires money they don’t often have. Then there’s the fact that even loving family members find your kids too overwhelming to deal with much of the time. Then there’s the problem that most ASD families are scrambling to pay regular bills and pay for all the extra therapies needed just for the small chance the kids can grow up to be self sufficient and independent. There is. no. extra. money. Money goes to doctors and therapists, not piano, dance, swimming, or other fun lessons. Forget about any money for a night out or investing in your own hobby. Plus, the timing of the said therapies, schooling, etc, takes up most of every day so “JUST” taking time for yourself usually means staying up late and sacrificing more sleep.
Yeah, it was a good article up until that point.

Another Mom Quote; I cried reading all of these. I have 3 stepsons with autism. The middle boy at 16 is the most severe. When he hit puberty, he developed catatonia on top of the autism. He is non-verbal and not potty trained, and he is now having seizures. My husband does most of the work with him. We have very few nights where we sleep the whole night. The catatonia has taken over his life. Causes him to become like an animal. Shrieking, trying to escape, crawling around on his hands and knees. Smearing feces all over the walls and his bedding. We’re struggling to find a respite worker (because he can be aggressive). We have in-home ABA services weekdays for 2 hours, but we can’t take him anywhere anymore, and we can’t have people over. We’re just isolated with no end in sight. Hard to get doctors to listen and help. He needs ECT for the catatonia. It’s an endless battle dealing with him everyday and dealing with the so-called help out there. Society is not equipped to help with this epidemic of autistic children.

I'm jaw dropped by these particular stories because of the amount of dedication and commitment to Special Needs Children but the underlying issues that go along with this. Special Needs Parents are expected to do everything and they cannot. They're Human like anyone else and yet they probably don't get the Support they desperately need. I really want to learn more however, one Mother was right, our Society hasn't caught up with the changes that the Special Needs Community has and there's a limit to what Others are willing to give of themselves and their own willingness to be apart of their care too.
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jaymic64 · M
Thanks for sharing. I have a special needs son that is now twenty. It’s been a difficult journey.
Broache73 · 46-50, F
@jaymic64
One Person wrote something so wrenching that was hard to believe however, this is their reality. Parents don't necessarily sign up for the life they have with their Special Needs Children but it's honestly the life they have and they deal with. Others are uncomfortable around these Children due to certain behaviors or difficulty relating with the Parents. But it doesn't stop the Parents from needing comfort and support. We as a Society will have to find a way to do better, then find a cure for Autism up and down the spectrum too.

Families can be and are so often very isolated... "Our only child has significant Special Needs - Total Care. As our son's Special Needs became more noticeable with age we began to notice ourselves being excluded more and more from other gatherings amongst those at our church we had always been together with. Our son, did not fit in with these Others and the other kids did not care if they invited him to their house. Parents seemed most concerned with their own Children, that their kids had playmates and encouraging them to include my nonverbal, multiply disabled son was never a priority - ever. We lost many friends or basically they just excluded us totally and we drifted apart.

As far as inviting people to our home - I can SO relate, THANK YOU, to what you said about not being comfortable having guests navigating a path through your living room! I felt so alone about my inadequacies about my inability to keep up with my house and watch it just deteriorate especially in the years since my son "graduated" from 🏫 School Entitlement. He has been home with me, constantly, 24/7/365. I am his one on one all the time. I have no help. My house has fallen into total neglect. All of my time and energy is spent supporting my son's daily needs - all his Care, his Doctor's Appts, fixing a very Special diet, feeding him, taking care of incontinence issues, laundry that's at least 10 times what mine and my husband s combined is. I am married, but my husband works a lot for little pay, we don't make ends meet for just our basic needs and my husband is not available to helping me. I am physically falling apart as my son is big - 6'2" and 175 pounds. He needs much physical assistance and the toll his Care has taken has affected me in so many areas. My parents were our biggest support since our son was born in 1987, but my mom became terminally ill less than 5 years after his birth and thru the next almost 20 years of her life, they would take care of him while she was doing well enough, in order to give me a break, let me get to a Dr. Appt, or so my husband & I could occasionally go out to dinner, but it became impossible her last decade of life and 4 years ago she passed away. They have been our only real support, the only ones who ever cared enough to take care of him. They adored him. Having never moved his whole life and going to the same church it was so sad to see how no one cared enough to really get to know him, to realize how actually cruel it was to ignore him or to not teach your children to embrace those who are different. It was so sad. Some were very nice to him, especially some middle or older age folk, but while we were in church and not spending a great deal of time with him, and again, no one ever volunteered to help us out. Are people really so blind?! Or is it selfishness?!
Our son never had any party invites, besides going to our own family Birthdays together. Our son was never included. Ever. It was heart-breaking. When he was younger, it would have worked out really well. He would not have any issues being there. He appreciated attention from Others.
When I'd get together with some of my closer friends, i remember how my friends would sit by the poolside and chat, or by the lakeside and chat, watching their kids from time to time, while I was in the water, hands never able to leave my son. This is how get togethers with even good friends would go. I would be my son's entertainment and Caretaker. The other adults got to enjoy each other's Adult company. I so wanted to be able to just sit and talk with my friends. With Adults. The other kids got to enjoy playing with all the other kids, all the kids, that is, except my son.

I could go on and on, but my point really was answering your questions and yes I am so extremely isolated. No one would know if we dropped off the face of this earth, except Family. It shouldn't be like this. I pray that more churches really make it a priority to include those who are viewed as different because of their Special Needs, embrace them, train up the church from the time the kids are little, train those who are older, embrace the need for programs involving those with SN and do something about it..it's a real heartache. I am so lonely, so isolated, and my son deserves so much better and much more in life than this. Tho nonverbal, he is social. Yet he is mainly just ignored." One Mother says...
jaymic64 · M
@Broache73 I know all to well what you’re going through. I have basically lived the same as you. It’s difficult for all involved. My oldest passed away last year and now I’m raising my three year old grandson. Not much help to be had there also. It’s a lonely life but it’s not the kids fault. Not many people even try to understand.
Broache73 · 46-50, F
@jaymic64 Oh,No No. I don't have Children, I was sharing what another Woman and her husband experienced and still deal with sometimes. I don't have the responsibility of a Family or anything like that. But the story she told shook me up and it helped me to start to change my attitude and understand more towards the Special Needs Community especially the Parents.
jaymic64 · M
@Broache73 I understand. I wish more people could open their eyes and hearts.
Broache73 · 46-50, F
@jaymic64 It's unfair for Others to treat Special Needs Children like they're not really relevant. That's like acting as if they don't have a real issue. The Parents are the Ones who suffer the real consequences of ignorance and complacency of others, since they watch firsthand how their kids that they love more than life itself are treated. Parents are often shamed because of the guilt, grief, exhaustion, and anger they may feel for the reality that's handed to them, that's totally unfair. They have every right to express their real feelings about a life they wouldn't have asked for. If they could take away their Children's struggles, and infirmities, I'm quite sure they would, but they still love and cherish their unique Children and want Others to do the same, they wouldn't think that's asking too much.
jaymic64 · M
@Broache73 no it wouldn’t. Unfortunately most people turn their backs on us. Including family. People like us don’t have a social life or many friends. It’s the world we live in. Sad
Broache73 · 46-50, F
@jaymic64 I do understand how uncomfortable it can be for some to interact with the Special Needs due to not having experience or never knowing much about Autism, Asbergers, PDD, ASD, or any other of the disorders. I certainly don't want to discount what Others honest interactions may be. After all, if it's not their reality or if they've never had any experience with this then it would also be unfair to fault them for something they know nothing about, and something they don't know how to approach or handle. Their ignorance isn't always their fault either, I don't want to discount that.

My solution to the issue of addressing Society with what we're discussing would probably be Holistic. Everyone is probably not going to go along because that's not what they're ready for or maybe they're just not there yet, as far as the Special Needs Community. I think that we really should advocate for enforcing the laws that we already have on the books as far as Disabled Persons...
We don't need new Laws, because that might not solve the indifference Others may have and it could exaserbate things...
Parents have to continue Advocacy so we can more awareness to Autism and other disorders...
Then Others can have Advocacy for Education so Others actually understand what it is instead of what they may think or some misleading information out there...
I think that this would be a start in the right direction as how People can learn and read about the Community and how People such as myself can learn and change perceptions attitudes also. Parents desperately need support and Advocacy for themselves too especially after the grievance they can feel and of course the exhaustion.
jaymic64 · M
@Broache73 people’s attitudes would have to change. People just don’t want to be bothered. The lack of empathy is on the rise. It would be amazing if people took notice of us.
Broache73 · 46-50, F
@jaymic64 You're so right on that. We as a wider Community should be informed and having more discussions on this issue and others along with this
Broache73 · 46-50, F
@jaymic64 I read tonight about Fathers of Special Needs Children and it just sank my heart. This One Dad of a Special Needs Son wrote...

"My son has Down's Syndrome he's 7. Some days are harder than others. Today at 🏫 School he had breakfast with a Veterans day. I'm his Father and also a Veteran. While Grandparents and Parents were enjoying their time with the kids, I was chasing my son around listening to screaming watching other kids laugh at him, finally him flopping on the ground. As I left to go to work it didnt dawn on me until I walked into work and started crying. In 7 years unlike other Parents with "normal" kids, I have not had a time with my son that while trying to create loving memories, he has acted out like this and it's getting worse...It's been since his birth that I've broke down like this. I came home from work so no one had to see my tears because they would not understand. 

I love my Jayden more than anything in life but would just like to have a normal I'm a Dad moment, and enjoy it. Is that bad? Or selfish? Been 7 years.... today I broke down...feel like a bad Dad for not understanding.
jaymic64 · M
@Broache73 I definitely know a lot how he feels. I’ve had a few good moments but they are far and few between.
Broache73 · 46-50, F
@jaymic64 Another Mother wrote "An article on Facebook helped me feel not alone. I have been using a therapist because my child’s Special Needs are not obvious but very real. She has a number of diagnosed mental health problems that wreck havoc on all our lives and asking for help only served to increase my stress. This is because I have been told to parent my child and she would be fine. I have been accused of heinous abuse due to her delusional episodes yet there was never any harm to her. I have been told I am unfit, inept, permissive. My child’s violence has resulted in injury to my property and myself and I have been told it’s my fault and I deserve it because of how unfit I am. No one deserves violence or abuse but my child does it because of her struggles, not out of malice. Now, after 15 years, I have lost my Spouse, a good portion of my Friends, found no one I could trust and am so sick and exhausted. When my therapist suggested I had PTSD I couldn’t wrap my head around this. This helped me just not to feel alone and the PTSD reference helped connect me to what my therapist has been saying. Thank you for that"...