A Mother Shares the Daily Challenges She Faces Caring for Her Special Needs Son

A person’s true feelings are often difficult to express during an interview. When asked a question by the interviewer there is no time to rehearse but only grasp at the nearest and most plausible explanation.

An article published in Scary Mommy touches on the real emotions felt by one mother as she attends to her special needs son.

Megan Rothney wants to share her experience as she manages life and love with her neurodiverse son.

Megan begins on a low point when she expresses her frustration about the responsibilities that accompany being an advocate for her son. But at the end of the interview, she acknowledges her joy when her son, who depends on her 24/7 and tells her over and over how much he loves her.

About the Business of Motherhood

Megan tolerates the “endless meetings” with professionals that she is required to attend to have plans for her son drawn up and approved. According to Megan, these plans are expensive and often do not materialize.

There is one meeting reserved just for Megan, and that is an appointment with a psychiatrist which is labeled as “maintenance”. Megan admits to lying awake at night wondering what her son’s future will be like. She also relies on tranquilizers when she feels the pressure is overwhelming.

She describes people at the meetings telling her that she must read to her autistic child and speak to her child in order to teach them to communicate. Megan claims that these people just do not fully understand, yet they persist in pressing forward with their personal opinions.

It was therefore a relief for her to learn upon her son’s autism diagnosis, that it was not the lack of reading and speaking to him that caused a delay in his learning ability.

Megan must also work with various agencies to utilize resources that are available for her son. Although it means additional time commitments, she takes courses designed to keep her informed about the latest autism therapies.

Her fundraising activities are similar to those of other parents who create non-profit foundations for their special needs children. In Megan’s case, they live in a rural community, and she found herself not only advocating for her son but for other families in her community.

According to Megan, it is sometimes necessary to become a full-time advocate when a parent discovers the professionals working with a child have not received proper training. Her efforts include writing grants, at times for people she has never met. Megan has arranged awareness walks, training programs, and campaigns.

Perhaps one of the most frustrating aspects of caring for a special needs child is being convinced that his autism is under control only to be presented with new challenges.

Advocacy Can Backfire

People can be sensitive to constructive criticism. When a parent tries to speak up for their child, a “professional” on occasion may take this as a personal attack, creating a roadblock to the parent’s role as an advocate. Parents may have no other option but to sugar-coat their issues, making it a one-way street when the sugar-coating is not reciprocated.

One of Megan’s most difficult challenges is what she refers to as a balancing act. Trying, on one hand, to see that her child has access to the best services while on the other hand being careful to tread lightly on the feelings of professionals who work with her son. She has learned to give up only when she feels that the fight is not worth the effort.

But Megan admits she has to fight against envying other parents who can drop their children off at sporting events with a wave and a smile feeling confident about their safety. There is always the feeling of having to fight against being jealous of parents who do not have the same pressures, fears, and frustrations.

And Now the UpCycle

Well, that was an example of Megan’s daily fears and frustrations. She is anxious to explain some of the joys and satisfactions of being a mother and an advocate to a son with autism.

For example, Megan explains that the love she receives in return from her son is on a very passionate level. He gives her so many words of love and hundreds of kisses each day. She is aware that many parents cannot say that they get the same attention from their children. Megan is also aware that there are many parents who have children with diseases that are much more severe than the one affecting her son.

Megan talks about her joy when she looks at her son who not only depends on her but also trusts her completely.

She is grateful for the help of friends and family. She also expresses her gratitude for a behavioral therapist who has worked so hard to give support to her son.

Megan is often grateful at the end of the day that she has accomplished as much as possible for her child. That she has met many challenges and can enjoy the benefits. Megan says that she would not change one thing.

The entire article from Scary Mommy is available here.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email