For my choice project I chose to interview a parent who has a child with special needs. The parent I chose to interview is a person I work with. She is a mother of two children, a son and a daughter which her son has been diagnosed with autism. Her son is ten years old and has been living with autism since he was diagnosed at the age of three. I have known this mother for about three years now and have helped her in many of the autism fundraisers that she puts on to raise money for her autism support group.
I chose to interview her for my paper because I have met her son and have observed her being a parent to this child who showed some very challenging behaviors. I was able to produce many questions for her and was looking forward to having a discussion more on a professional level. When I had approached this mother about participating in an interview about having a child with special needs she said that she would love to contribute her knowledge on what it is like raising a child with this type of disability. We both decided that the best place for the interview to occur would be at her home.
I had given this mother a copy of my questions before the interview so she would be able to think over the questions and be able to find any information she may need to answer the questions. My first question to start off the interview was what was your child’s diagnoses. The mother had stated that her child was first diagnosed with global delays at the age of two and about a year later diagnosed with autism at the age of three. The mother had stated that her son was developing normally but as he got older she started to observe that her son stopped doing actions he could do before.
For example, the mother explained that her son was babbling, cooing, and making sounds, he also started to show signs of walking but then as time went on her son became more quiet to the point where eventually he made little to no sound and his walking had came to a complete halt. This was the answer to my second question which was, were there any red flags to why you were concerned? The mother had said that these were the red flags that lead to her sons diagnoses. My next question for this mother was what did you do to learn more about this disability? She answered by saying she just did a lot of research nline finding different websites on autism. One website she mentioned that she uses often is emedicinehealth. com which gives great information on symptoms, articles, and treatments that parents who have a child with autism can find beneficial. She stated that this website also has many other disorders that are on there and that this site gets into great detail. Additionally, she stated that she learned and found that some people with autism have grown up, married, and become computer techs and have productive jobs that lead to very useful lives. To her this was the most inspiring of all.
As our interview went on I started to get into more detail about having a child with autism and the help and support she receives by others. My next question for her was did you or your husband go through the five stages of grieving? denial, anger, bargaining, depression and acceptance. She wasn’t sure about her husband but she said that she did blamed herself for her sons problems. She assumed that since she carried her son for nine months that it had to of been something she did to cause this disorder. As time went on she declared that she got past the blaming stage and realized that it wasn’t helping her son to blame herself.
She finally accepted the situation for what it was and just concentrated on getting her son the help he needed. This mother said that she never went into the denial stage because she knew her self that her son showed signs of having problems. She actually said she felt some relief when the doctor said that their was something wrong because then she thought that now they could cure this. Bargaining wasn’t a stage that she even thought of. She said she new inside that if this is the way her son is then nothing is going to change this unless they help him progress through therapy and intervention.
As time went on I started to get curious about the services she receives for her son. This was my next question for her, what services were you able to provide for your child? She stated that early intervention or Easter Seals had been his primary help until he was enrolled into school. Then MDS took over once he got into school. All his services are done in school the occupational therapist, physical therapist, and speech therapy are done on a weekly basis. The mother even stated that her son goes horse back riding with his class. She feels good about the progress her son has progressed to but feels that he needs more in school service time.
The reason her son does not receive more in school help is because the school is stretched thin on funding and finding the necessary people to give him services. She also goes on to state that finding help out of school is difficult. This had answered my next question for her which was do you feel your child is getting enough services? I didn’t want the interview to turn to a negative aspect of things so I decided to ask the question what are some strong aspects of your local public special education programs? She seemed to have a lot of great things to say about the public special education programs.
She stated that the teacher that is in charge of her sons AU program (AU being the Autism program in Rindge, NH. AU being the symbol for gold) is willing to try anything to help the children and truly cares about them. She stated that now that her son is in third grade the program started taking her son every other week to go shopping so he could get use to being in public. This also helped him learn to shop for himself because they had him picking out his own snacks and paying for them. She said that she wanted this to continue after her son had changed programs and his teacher has done a great job of doing so.
Although, I wanted to keep things on a positive note I wanted to really know if there was anything she would like to change about the local public special education programs. This was my next question for her and surprisingly it was the answer I expected. Her answer had to do with funding. She feels that funding needs to improve so services can be better and the school can provided more teachers and aids for the children. She also felt that the public should have more training sessions for parents and even teachers so they can be more educated.
As the conversation went on I got curious about what kind of advice she would give to other parents going through a similar situation? She couldn’t stress enough on having a parent find a good doctor. She said this is where it all starts. After finding a good doctor finding a support group helps tremendously. Having support and people their to speak to and make connections with because they are experiencing the same situations sometimes can be a relief. One statement she couldn’t stress enough was don’t try to change the child just love them for who they are and help them to the best of your ability.
So far in our interview this mother had some great advice and information on what life is like having a child with special needs. She stated a lot through out the interview about funding so I was interested in knowing where she sees the future of special education in the next ten years. She felt like she didn’t really know how to answer this question. She said that she hopes it improves even though she sees how the economy is now. She feels that there are schools that really are great but either are very hard to find or are to expensive.
She feels that schools that do the bare minimum for these children are easier to find because they are usually a lot cheaper. She just feels that funding plays such a big part in services, schooling, and education and that it isn’t fair to family’s and the children. During the interview she had talked a lot about being a parent of a child with special needs but never really told me the difficulties of being a parent with a child who has special needs. This was my next question, what have been the hardest things you have experienced as a parent with a child who has special needs? Being in public seemed to be her main answer to my question.
She said it can be hard if her son has a melt down in public. A lot of people stare and probably think that her child is a brat and they need to raise him better. She said it’s frustrating because you just want to tell these people he’s autistic but it isn‘t that simple. Another hard thing about being a parent with a child with a disability is finding time to go out as a couple. This is really difficult because finding someone they can trust and who can handle her son can be tough. She went on stating how she constantly fights to get him what he needs because the only thing she wants is for him to live a normal life.
A constant worry her and her husband have is what if something happens to them who will take care of their son if their gone. She said she doesn’t like thinking this but she said its just the facts of life and something they do have to face. I decided to switch the conversation and bring her daughter into our discussion about her brother. I asked the mother how her daughter deals with her brothers disability. She said that her daughter is very protective of her brother. She said actually her daughter is very protective of any child who has a disability.
She said being a parent who goes to many different support groups or play dates her daughter meets many people who have children with disabilities and shows great enjoyment as being part of that environment. She event said that her daughter made a statement saying she wants to become a teacher when she’s older to help these people succeed like her brother. She felt although her daughter and son get along great she does see some difficult behaviors in her daughter when it comes to wanting attention. As our interview is coming to an end, one question I didn’t ask but felt is very important was how she felt about advocating for her child?
This mother said advocating is something she can’t do enough for her child. She wants to make people aware of what’s out there for these children and the kind of help they should be getting to help them succeed in having a normal life. She said she feels that advocating for her child has turned in to fighting for her child. She says it’s a constant fight whether it be more services or more or less time in his class depending on how he’s doing. She said right now with her son being in third grade he only has two years before he moves on to middle school and that there is no services in place for him.
As of right now she says her and her husband advocate towards the school board and the school itself to get these services ready for her child so they are able to meet his needs the day he starts school there. Over all she feels that if they or any parent don’t advocate or fight for their child who will. This is like letting a child down who we know can’t fight for themselves. She does state that it does get tiresome and it can take a lot out of you but these children are well worth it all.