Could anyone help me. I'm writing a dissertation on the impact on parents who have children with disabilities?

Question

My dissertation title is 'the emotional and practical impact on parents who have children with disabilities.' Would anybody like to share their experiences with me that I could add to my work. Your and your child's identity would be kept confidential and it is up to you what information you give me could be used in my dissertation. Any experiences are welcomed and a varying range of disabilities are of interest. This would be really helpful if anyone could provide some information on the impact it has on their lives, schooling, helath and emotions. Thank you

Answer 1

I have worked with people (of various ages), with developmental disabilities, for 24 years. Only a few relatives keep in touch with their afflicted child. I've seen some parents try to use the system to gain some sort of reward (usually money) from the  organization that I work for.

Answer 2

Email me.  I am step-mom who rasied a MIMH girl from the time she was 8 years old, I think of her as my child.  I am now her legal guardian and she is 25.  Ask specific questions if you like, I will answer the ones I am comfortable answering, I won't be offended, the only stupid question is the one not asked.  Hope I can be of help, I will be glad to share her past and how she is doing now.  She goes off to work in about 1/2 hour so don't panic if it takes me a little while to respond, I'm taxi mom.

Answer 3

I am the parent of two special needs children. Yes, that includes much more than learning disabilities. My eldest was diagnosed ADHD in kindergarten. My middle son was born mild MR with a host of medical ailments. Things were manageable and we made good on financial responsabilities, went to church, coached soccer, and were contributing to our community. Then when my eldest was in second grade everything changed. He had a stroke at school one day and our lives changed forever. We were so overloaded with medical bills, trips to the children's hospital 2hrs away.......... I lost my job, we lost our house, the spiral was fast and hard.  Emotionally we were a wreck, depression, fighting. Never getting proper services at the school sp.ed. dept just added to this.

Answer 4

My daughter has Trisomy 8p, which is a rare genetic disorder. She is actually a one of a kind with her duplications and deletions. She is almost 7 yrs. old and functioning anywhere from 3 mo. to almost 18mo. She doesn't sleep through the night yet, not potty trained, not talking, not feeding herself, etc. She can walk but doesn't have good balance. Life will never be the same. Health insurance does not cover as much as it should. We get no help from the state or government. She has no case worker so we get no help finding programs to benefit her. She is on a special food diet which costs a fortune and she needs pedialyte on a daily bases. I have a hard time working between her school and all of her doctors. Which puts stress on my husband to provide for the three of us. I wanted to go back to school to finish getting my R.N., I don't it will ever happen. Having a child that needs constant care wears on all relationships. Spousal relationships wear very thin, having no time together and always being stressed out. Friends seem to slowly disappear and it is hard to see friends with "typical" children all of the time. You want your child to be able to talk, run around and play sports. People and family members never know what you have to go through on a daily bases. You can't just pack up and go like other people with children can. It is extremely hard and I can see why the divorce rate is so high.

Answer 5

I'm not sure if this meets your criteria . . . but my son may or may not be HFA.  Oddly, the school system classifies him as HFA . . . private doctor's believe otherwise.   From personal experience and anecdotal evidence provided by other parents in similar situations, the difference between having a child who is HFA or simply quirky is money.  Again, this is personal observation and not based on research or fact, but it seems that the parent's who are able to afford private therapy and are not reliant on the public school system are more likely to have "quirky" children whose problems or set-backs are easily overcome . . . For instance, social therapy through the school system is taught (if at all) in a class room . . . social therapy through private means is taught on a play ground . . . a much more appropriate setting for a young child.  Results were significant within 30 days utilizing the play ground method . . .  Another factor for success (undocumented) . . . does the child have a parent who is able to stay at home . . . I spend about 15 hours a week on speech therapy with my five year old son (outside of private therapy).  If the parents of a disabled child were financially unable to have someone stay at home how would this happen?  Your child's success would be left to an underfunded and overworked school system . . . not a good scenario.  Right now, part of my son's private speech therapy is dramatic arts . . . instead of having the children merely memorize sounds and words - the children are expected to apply them and perform "plays" for the parents once a month (private therapy).  My son is fine tuning his motor skills and social skills through music therapy . . . again application via performance is monthly.  These techniques are pricey but effective.  Motivating a child through play yields much more dramatic results than standard therapy and sadly, it is access to financial resources that seems to be the determining factor on whether or not a child receives such services.   Please feel free to email . . .

Answer 6

20 years experience says divorce in these parents is a lot higher than the norm

Answer 7

contact me at my email

Answer 8

contact me on my email address I have 2 autistic boys and I am a teaching assistant

Answer 9

Contact me at my email.