The Autism Stories series at Always Keep Progressing is giving voice to the various lived experiences of individuals who have been diagnosed with autism (and their families) from all around the world. Today, we are so excited to share the fourth installment of this blog series with everyone! We spoke with Marie, the mother of soon-to-be five-year-old Marc-Alan, who lives in Sanford, Florida.
A: How have you and your son been handling the pandemic and everything going on right now?
M: It’s been rough. At this time, though, we’re finally down to a better routine. He understands the routine much better than when everything started. It took us a while to get to this point, but we’re really doing much better now.
A: Where are you located?
M: I’m in Sanford, Florida. It’s not too far from Orlando.
A: When was your child diagnosed, and what were some of the initial symptoms that you noticed?
M: Marc-Alan was diagnosed at the age of 2. Some of the initial symptoms included: rocking back and forth, not being able to tolerate noise, and at the age of 18 months, he lost a lot of the words he had been saying. In terms of his gross motor development, with running and jumping and things like that, he was definitely on track. But when it came to socializing or communicating the way his peers could, he wasn’t doing these things at the age he was supposed to.
A: Okay, and as soon as you noticed these signs did you go ahead and try to get a diagnosis?
M: Yes. I mean, I felt like I knew something was different at the age of 7 months, because you could cough or sneeze and that would startle him. The water in the bathtub bothered him, too. We really couldn’t go to weddings and concerts and things like that. As he got a little older, he would cover his ears and cry incessantly, because he couldn’t tolerate the noise. At the time, I was already working as an occupational therapist, so I knew what some of these signs meant.
A: How did you initially feel when you learned about the diagnosis? What has your experience been as a parent with a child on the spectrum?
M: When I first learned about the diagnosis, it didn’t bother me as much, because I felt like I always knew what it was. The biggest challenge for me, though, was accepting the diagnosis. For years and years, I didn’t want to accept that he would be different.
A: I’ve spoken with a few other parents who have also experienced this around the world – it’s just interesting to see how different people handle the situation and how they feel about receiving the diagnosis.
“The biggest challenge for me, though, was accepting the diagnosis. For years and years, I didn’t want to accept that he would be different.”
A: Tell me about some of the things that Marc-Alan struggles with because of his autism, and then tell me some things he excels in because of it!
M: He currently has difficulty with self-feeding tasks and self-care tasks in general – dressing, bathing, toileting, brushing his teeth. He also displays impulsive behaviors and unsafe behaviors. He’s a picky eater as well. One of his strengths from the get-go was eye contact. That was never a problem with him. Gross motor skills are another strength he has. He loves to run and jump and climb. He would probably do well in gymnastics. And he loves music, so I will be looking into music therapy. He loves being sung to, and he’s very affectionate.
A: Aww, that’s so great! I’ve been a pianist my whole life, and when I went into this field, I wanted to incorporate music into it, which is why I started my own practice. I love to see how much music can impact children on the spectrum in a positive way.
M: Awesome! I love the piano. I’ve always wanted to learn how to play, but as a parent you have so much on your hands sometimes.
A: Yeah! And I definitely think that if music is an interesting of his, it’s definitely something you can look into. Getting music therapy or even learning an instrument could be good for him, and he may excel at music.
A: How important is early intervention to you?
M: Early intervention is crucial to help children with autism develop skills and master skills at an early age. The hope is that early intervention can help reduce regression. If you start early, they tend to master these skills. That way, when they get older, you don’t have to go back to things that they should have learned when they were 2 or 3 years old. Early intervention is definitely, definitely crucial to the development of the child.
A: I totally agree with that! I think it’s really important to educate people about the signs of autism and the importance of early intervention so people don’t keep waiting and the child can have a better prognosis. Hopefully, this can help to educate parents who are maybe going through the same thing or through the same initial stages you did, where they’re not quite sure about the diagnosis or how to go about it.
A: What are five words you would use to describe your child?
M: Silly, affectionate, smart, happy, and spontaneous.
A: In what ways have you advocated for your child, and why do you think it’s important for parents with children on the spectrum, particularly in minority communities, to advocate for their children?
M: I’ve called meetings, attended meetings in school, and stayed in close contact with every therapist. I want to make sure they know that I want them to focus on the things that are important to the child and to my family, not just what they feel should be worked on. With his last school, they were unable to provide Marc-Alan with the kinds of services he needed, so I took him out of school and found a different school to suit him better. It’s definitely important for parents to get involved as much as they can in the whole process. Although therapists are professionals and know what they’re doing, no one really knows your child better than you do. You have to make sure that you make your voice heard and let them know exactly what you want and what you want them to work on, because you are the one who knows the struggles at the end of the day and you live with your child. It’s definitely important. A lot of minority parents may not be as educated or informed about it, and sometimes it can be hard for them to really advocate for their child, because they don’t know where to go or who to go to, and what resources are available to them.
“You have to make sure that you make your voice heard and let them know exactly what you want and what you want them to work on, because you are the one who knows the struggles at the end of the day and you live with your child.”
A: I definitely agree. That’s why I feel it’s so important just to talk about it and try to educate people. If there is a family that knows less about this field and is unsure what to do, then maybe they won’t feel so alone if we’re able to spread awareness. This is especially very related to everything going on in the country know, because some people don’t realize the disparities we’re seeing – it’s important to be aware of that and try to make change to help those people.
A: So, I wanted to touch upon the subject of race, in light of everything going on right now in our country, and in terms of spreading awareness and advocating for the Black Lives Matter movement. How have you handled stress with a child on the spectrum? What words of advice or encouragement do you have for other parents or other parents of color who also have children on the spectrum? And how has the intersectionality of having a child with a disability and being a person of color impacted you?
M: The way I handle stress [laughs]. If I told you I have a specific method I use, I would be lying. But I do appreciate having time alone. I love to write in my journal, so when I do find the time late at night when the kids are in bed, I tend to write my thoughts down. And I listen to music. Those are three things that can help me to deal with stress, or, at the end of a long day, they are my go-to before I go to bed.
Some advice I have for parents is: know that you are not alone, and don’t be afraid to ask questions. No question is a stupid question – if you don’t know, you don’t know. Reach out to people in the community, reach out to your coordinator, and let them know your concerns for your child. Don’t be afraid to speak up. The journey is a long journey – you will have moments of joy, sadness, and anger – but at the end of the day, your child needs you more than anything in the world, so you have to find a space where you’re able to feed yourself mentally, so you can give back to your children or your child, and give them the best care that you can.
With the intersectionality that you’re referring to, I feel like the awareness is just starting to come out now. For Black people and other minorities, though, we have always known about these disparities, and of the inequalities, because you have to be a minority to understand. The awareness is being brought now, but we’re seen it all over – in the same community where you live, you walk down a couple of blocks and the schools are different, the residential areas are different, and the services being provided to the communities are not the same. I’m just glad the awareness is being brought now, so we don’t feel like it’s something that’s just in our head, but that society is really standing up and realizing that there are inequalities and disparities between different groups, and we need to do something about that.
“For Black people and other minorities, though, we have always known about these disparities, and of the inequalities, because you have to be a minority to understand… I’m just glad the awareness is being brought now.”
A: First of all, I love the advice you have in terms of handling stress. And music is a really great way to deal with stress! I also think the advice you gave for parents is great. Thank you for sharing about the disparities you’ve seen and experienced. Of course, I’m a minority and have experienced racism, too, but I do think it’s on a completely different level with Latino and Black communities, and this needs to be addressed. I think it can start with education, educating your families or the older generation that thinks differently. I think that the awareness is good; I have some hope, with the younger generation and even high schoolers going out to protest.
M: Yes, exactly! I have hope as well.
A: I think the younger generation can see things more clearly, and they have more access to things I didn’t growing up, in terms of being so connected through social media and everything. They have a whole new platform to use their voices, so I think it’s important that everyone talks about this and it’s not something that is ignored. I think some people feel uncomfortable talking about race and don’t want to address it because it’s a “sensitive topic” but I think it’s still important to talk about it, because then we can really create more of an impact and more pressure to do something about it and make change.
Thank you so much to Marie for speaking with us and for sharing your stories about raising your wonderful son, Marc-Alan. We are very grateful for your valuable experience and advice. Lastly, happy birthday to Marc-Alan, who turns five today!