Sherilyn Toro is an amazing mama to two kids. Her daughter was diagnosed with type 1 diabetes when she was ten years old, and her son Gabe wasn’t medically diagnosed with autism until recently, but they have known about it since he was a toddler. She is so incredible and openly shares about her hopes and fears surrounding her son’s diagnosis, how important Early Intervention was to his growth, her grieving process, how it has affected her marriage, and what having two children with a diagnosis is like. Sher has come such a long way on her journey and the wisdom and advice that she gives are things that I wish every mom could be told at the beginning of their journey.
Type 1 Diabetes Diagnosis
They were very lucky. Most people who find out their child has type 1 diabetes is already in a very life-threatening emergency state. The symptoms don’t start to manifest until they are already in such dire shape. It just happened to be that Sher took her daughter to her ten-year-old checkup and they noticed her blood sugar was high. The doctors did a standard iron test and they were able to see what her blood sugar was. It was a whirlwind. They were immediately shuffled off to the hospital and diagnosed pretty quickly after that.
It was very rough in the beginning. It is an attack on the pancreas and you can’t live without insulin, so it is a 24 hour, 7 days a week juggling of your blood sugar and if they get out of whack at all, you could die. So, every moment of her daughter’s life is in danger. Then you throw in autism and it is a big roller coaster. It was hard to get used to in the beginning.
Autism Diagnosis
Technically, Gabe wasn’t medically diagnosed, but they have known he has autism and been working on Early Intervention since he was two, almost three. They had not known for sure, but they were already going down that journey of autism well before that.
Gabe did not ever show those very classic signs of autism. He was very social and he has always been more of a seeker instead of an avoider. He has sensory issues, but they tend to be more sensory seeking rather than sensory avoiding and he was always interested in playing with other kids. He had a lot of tantrums and rigidity. Very sensory seeking, hyperactive, always having to touch and lick everything. A lot of those traits are not ones you hear talked about as much when you hear autism awareness. Sometimes when they tell you the red flags or symptoms, you hear anti-social, no eye contact, sensory avoidance. So, she didn’t expect it with him. He was developmentally on track with speech, he would say the right words and sounds, but he wasn’t putting them together and making language.
When Gabe was closer to three, Sher said, “I want a speech evaluation.” The person evaluating him addressed him with a language disorder. Sher finally came out and asked her what it meant, and the doctor said, “autism.” That was the first time the word was mentioned. She tried to approach it bravely and professionally, but she couldn’t help but burst into tears. She had kept praying, “no, don’t let it be that.”
Grieving and Healing
It was rough. It was brutal. “We still probably all have our moments where the grief doesn’t end. Over time you do have acceptance, but you can still cycle back through it at times.” In those beginning stages, she was crippled. Those stages of grief, you start out in shock. Immediately she went to the bargaining stage and kept thinking that if they went straight to Early Intervention that it could fix it and heal him instantly.
Through the days and months, it was intense anger, depression, and cycling through those emotions. Dealing with the question, “what does the future look like for my child?” She felt very alone and she couldn’t take him anywhere because of the behavior problems. Nobody around her understood that, so she stayed home a lot and hid. “It is isolating. It was a good couple of years of grieving and isolation before I started coming out of that hole and finding healing and acceptance for my son.”
Sher found a lot of healing through support groups, like on Instagram. She has a local support group for autism parents and she was able to connect with many parents when they were getting him into therapy and Special ED classes. That feeling of normalcy and “I’m not alone, there are others out there, helped me a lot.”
Early Intervention
They hit the ground running. Primarily with speech. Sher’s biggest concern was getting Gabe caught up in language. The biggest thing that made a difference was to have him with his neurotypical peers. They are role models and statistically, they do better learning and picking up on language from their peers then they do sitting in a speech therapy room or from their parents. She tried to inundate him as much as possible. They recommended in the early years, to try and get in 25-40 hours a week of therapy and Early Intervention, so she was as aggressive as possible and tried to also be consistent at home. She would put on youtube videos of language and kids talking and playing with toys appropriately and modeling the things she wanted him to see. She would keep it on all day so he could see as much as possible whatever they had learned in therapy.
How It Has Affected Her Marriage
Those first few years, it was rough because they weren’t on the same page. For Sher, she felt like it was an attack on her parenting because she was the one responsible for Gabe’s behavior, so if there was something wrong, it felt like a failure on her part. After a couple of years, her husband was able to believe it was autism once he started hearing from the professionals and saw the research. Ever since then, they’ve had a great partnership. Once their daughter was diagnosed, Sher fell apart again. It felt like bombshell after bombshell. Her husband was her rock and support and got her through her daughter’s diagnosis. In the long term, it made their marriage ultimately stronger.
Important Takeaways
- Ultimately, what we want is to find our place and feel accepted and loved in this world. So, the two themes go hand in hand. That acceptance of our child as a person, and you finding your tribe and that group of people who understand everything you are going through.
- Lean on your instincts and know if something doesn’t feel right. You don’t have that one person guiding you on one thing. You are the manager for all the different therapies and the school as well and the rest of the household.
- The key to a healthier marriage was always communicating and not expecting her spouse to read her mind. She learned to tell him when she needed a break and time to herself and for him to take over and get in the trenches and get dirty. That was one of the biggest keys to not letting it stew and buildup. Communication is probably the biggest key. If you have one person doing everything it can wear on you.
- Recognize and have empathy for what the other person is feeling too. Stop and think about what could help your spouse, and if you don’t know, ask them. That’s probably the biggest tip. If you feel like they aren’t helping, stop and ask them for help. Be direct and tell them what you need.
- It made a huge difference in her grieving process, having hope and being able to see a few people who had success with Intervention that took their kids pretty far. She needed a little bit of that hope to hang onto. Not all of us know what the prognosis is here, but there is still hope. She came to the realization that Gabe was made uniquely and perfectly and that we don’t have to judge based on somebody’s performance. You can still live a quality and fulfilling life with a disability. You have to say, “this is my child,” and not just see autism.
