Tareema Jean-Baptiste_NPN_Contributor

It was an early Sunday morning in March 2012. I did not get much sleep the night before, because I was 4 months pregnant with our second child, and our first child, Luke, had just received a diagnosis of autism and epilepsy. To say that I was stressed would be an understatement. Related: Your Child Received a Diagnosis, Now What? After speaking to my nursing pediatrician, it was recommended that I join a few community groups for support and resources. It was in this search that I found out about a resource fair that was created for parents just like me - parents that were overwhelmed, stressed, and on the hunt for resources and community. I was determined to provide my children with the best options available and realized that attending this fair might help me do just that. Overwhelmed with loneliness, desperation, and fear of our new normal we went to our first NPN Developmental Differences Resource Fair (DDRF) that morning. If I close my eyes right now, I can remember the moment I walked into my first NPN Developmental Differences Resources Fair. I can remember looking around and seeing so many resources and so many families, like mine, all in one room. Instantly, my stress levels decreased and I breathed a sigh of relief as the feeling of hope, which had escaped me for several months, came flooding back. I was able to connect with so many resources at once! The biggest takeaway was the connections with the other families I met; just knowing I was not alone gave me so much encouragement. The following year, I returned for my second DDRF. This time I was more confident, I knew exactly which resources I needed, and I was prepared with questions to ask. My biggest takeaway that second year at DDRF was that there is literally a resource for everything. Education, extra-curricular activities, therapies, government benefits, financial planning, whatever it is - there is a resource for it. I just had no idea where to look to find all of the information that I needed and had been too exhausted as a new mom to seek out the resources on my own. Related: Raising a Black Autistic Boy in America Fast forward to today and my son is now 12 years old and thriving! I have to say that being an advocate for my son and utilizing the resources that I found at NPN’s DDRF have made all the difference. I am proud to report that we have been able to change the trajectory of our son’s progress for the better. One of the best decisions I ever made was to pull my exhausted, desperate, hopeless, and stressed self out of bed that morning in March 2012, and take the first steps towards building our community and support network.

As a parent of a special needs child, I look forward to the periods of platitude. Every developmental stage is an uphill climb that seems to take forever. So when my child hits a plateau and can thrive in an age-appropriate developmental stage, I relish in the peace that comes with it. I have learned to relax during these periods until it’s time for the next developmental growth challenge. Well, during the spring of 2021 when we had finally settled into our “new normal” and were thriving in a pandemic world, BOOM! I started to notice my usual rule-following, kind-hearted son becoming more irritable out of the blue. And when I say "out of the blue," I mean over things that were never an issue for him in the past. He seemed more tired than usual, he was more sensitive to touch, and even though he has a speech delay, he is verbal — but he really did not want to talk at all. [Related: Raising a Black autistic boy in America] My husband, his teachers, and his therapists all saw this dramatic change in him. For weeks, I chalked it up to the time change. He has always had a hard time adjusting to the bi-annual time changes, especially when we spring forward, so I just assumed this particular year was just a bit harder for him. After weeks of dealing with his attitude, I finally spoke to his pediatrician. She referred me to an endocrinologist. After blood tests and an exam, the endocrinologist looked at me and said, “Well mom, the hormone fairy has asked him to the dance, and he has accepted." He is only 11, My baby is growing up, What does this mean? and Oh no, it’s time for the sex talk, were all the thoughts running through my head. I pulled myself together enough to ask her, "What does puberty look like in a child with autism?” She told me it is different for each child; however most will be more sensory-defensive during this time. She asked me to close my eyes and imagine what it would feel like to feel every single hair growing on my body, what would it feel like to feel the lump of an adam’s apple forming in my throat, and to feel all of the aches as the muscles grow and form in my body. She explained that this is what my son is feeling on a magnified level. This completely explained his change in behavior and his new sensitivity. [Related: Tips for your next IEP meeting from a special-ed attorney] Armed with the knowledge of what was happening, my husband and I immediately put a plan of action in place. The first thing we did was communicate this information to his teachers and therapists. This allowed them to make adjustments in their support. It helped him to continue to be successful and get the most out of school and therapy. Second, we talked to him about what was going on with his body. We discussed the physical and the mental changes that were happening. What stood out to me most was that once we assured him everything he was feeling was “normal,” his irritability lessened by 50 percent. I realized the unknown of what was happening was half of the stress he was feeling. We also asked him to tell us what things he thought would help him cope. He said exercise. Lightbulb moment! My son is a swimmer, and pre-pandemic he was in the pool for three 2-hour sessions per week. This gave his body good sensory work out. Since the pandemic he had been only able to do one 45-minute session per week. His body and brain needed a workout to cope and process all the changes that were happening. Since our son had done Tae Kwon Do in the past and enjoyed it, we picked that up twice a week. It took a few weeks, but we finally started seeing our son return to his rule-following, kind-hearted, non-irritable self. Lastly, we told him to come to us with any questions or thoughts he had about what was going in with his body. We told him nothing was off limits. We also prepared ourselves to be ready and open to answer any questions and have uncomfortable conversations. This part is ongoing, and things come up day by day. However, we have built a deeper level of trust that will be helpful as we enter the teen years. What I have learned on this journey is to start researching and talking to your doctors about puberty when your child is 10 years old. Prepare yourself and be open to questions and conversations. Honestly, if puberty was on my radar, I would have had a preparatory conversation with my son at 10 years old. I would have told him in a very clinical way what changes he may see in his body, and to let me know when it starts happening. Trust what you know about your child. If they have sensory issues, prepare for them to feel body changes on a deeper level, and think of activities they enjoy that can help their bodies cope with the feelings. Be patient, give them grace, and assure them that all the strange things they are feeling are normal and okay. Lastly, as a parent of a special needs child, remember our journey is a marathon: Breathe and give yourself a break. You are doing great!

My husband and I had no intention of moving. I am a Realtor and what I have in my condo, my block, and my neighborhood is golden! For us, we were settled. Then, COVID hit. (Insert eye roll.) After realizing it was time for more space, I started my strategic timeline. My oldest is diagnosed with autism and before COVID, he made great strides to be more flexible. However, when COVID hit, his entire world stopped. All the anxiety around everyday changes came crashing back. In some ways it is worse than before. With that in mind, I had to take a step back and listen to some of my own advice, which is usually given to my real estate clients who have special needs children. Considering this, COVID has raised a little anxiety in all of us so change is hard for everyone right now, especially children, and especially children with special needs. Your current home is their constant in an ever-changing world. Your current home is a place of safety and tranquility in a world that seems, at times, upside down. So this is a big change and needs to be approached with care. As a Realtor and mother of a special needs son, here are some tips I have told my clients. Start a casual conversation around the idea of a new space. Perhaps ask, “Wouldn't it be nice to have a basement so you guys have more space to play?” Or ask, “If you could have your own room, how would you decorate it?” Use whatever narrative that is personal to your situation. This plants a seed, so when you bring up the subject in the future, it is not a surprise. [Related: Chicago venues that cater to kids with special needs] If you can, give your child(ren) a voice in the process. Ask them to design what their new home may look like. Ask them to choose three neighborhoods they would like to live in and why. This will allow your children to take some ownership in the process. If you already know the areas you want to move to, consider putting shallow roots in those areas. Personally, my family is in this part of the process. My husband and I have discussed the three neighborhoods we would move to. Two out of the three neighborhoods are new for our family. So, we have switched some of our extracurricular activities into the two new neighborhoods we are considering. Weekly, we choose a different restaurant to patronize in the new neighborhoods. This is a natural, no-pressure way to explore the neighborhoods, and allow your kids to get to know the potential new neighborhoods. We also signed our kids up for activities at the park district in the new neighborhoods. This is a natural way to make connections with kids in the neighborhood. [Related: Back-to-school prep tips for parents of kids with special needs] Create a social story for each part of the entire process. This will be like a chapter-book social story, for which each "chapter" (e.g., "highlights" on Instagram) is a different part of the moving process. If your current home is to be put on the market, create a chapter around staging and showing your home. Create a chapter on packing up your current home; create a chapter documenting any construction or repairs needed in your current or new home before it can be placed on the market. Finally, create a chapter for the actual move day(s) to the new home. Really think through each step and create chapters in the moving "story" that your child can watch and re-watch as they wish. When you are under contract on a property and close to closing, ask your Realtor to set up a time for you to allow your special needs child to do a “sensory walk through.” I have done this for my clients and usually ask for a two hour block of time. This allows my clients to walk their child through their normal ADLs in the new space. Let them open the cabinet where their favorite snack will be. Let them fill up their water bottle from the refrigerator. Let them touch the walls, turn on the lights, check out the closet in their new bedroom. In their new bathroom, turn on the lights, the vent, the shower, and flush the toilet to let your child feel the water pressure and hear the noise level of the flush and vent. Whatever is an important or part of your child’s everyday routine, take the time to role play and let them feel the space. Does this mean that the buying and selling process may take longer? Yes it may. The suggestions above may or may not work for your special needs child, as every child is different. The fact of the matter is that moving is a major change that is hard for everyone, and if you have special needs child, you may need to take a step back to help support them through this change.

As the doctor held up our firstborn, the feeling of joy and overwhelming love was quickly followed by a heavy pit in our stomachs. My husband and I looked at each other and without words, we both had the same feelings and thoughts: While we were so happy, we also knew that raising a Black boy in America is a daunting task. Fast-forward two years and the words, “We recommend your child receive the diagnosis of Autism,” shattered our world. All of a sudden, we now had to raise a Black autistic boy in America. My husband and I were emotionally ill for weeks. My husband, especially, had a hard time accepting our new reality. His first reaction was to not follow through with the diagnosis. As a Black man, he had first-hand experience of the stereotypes and challenges our son would face. He knew that the world may never see him for who he is as a person; he knew he would be judged by the color of his skin and his diagnosis. He knew, because of this, people may give up on him or put him in a box and never give him a chance to show how great he really is. Ultimately, we followed through with the diagnosis because, without it, our son would not get the intervention he needed. We knew that without OT, speech, or ABA therapy our son’s development could stagnate and, as an adult, this would be more harmful. It’s an important reminder: Do not let fear stop you from making the hard — yet right — decision for your child. [Related: How to be an anti-racist parent] “The Talk” Every Black person in America knows what “the talk” is. It is not about sex. “The talk” has been something parents in the Black community have been doing for years. During “the talk,” we learn about our history; we learn some people still see us as inferior, some people hate us, and some people may use their power and position to hinder us from achieving our goals. We learn that the educational, financial, and housing systems in this country were set up to keep us out of the American dream. We learn that some community helpers, like police, overreach their power and sometimes hurt or kill us. So, we wondered: should we have “the talk” with our son? He has been taught to see the police as helpers, who will be kind to him if he gets lost or is in danger. The reality is, some police officers may see the color of his skin first and view him as a threat. The reality is, as our son gets older his meltdowns will probably be misunderstood. My husband and I decided to have “the talk” in phases. We took into account our son’s developmental understanding of social dynamics. We have talked about slavery, we have talked about the Civil Rights movement, and we have talked about racism. We have chosen to leave out certain details because ultimately it may be more confusing and traumatizing. We still need him to seek out the help of a police officer if he is ever lost or in danger, so we decided to be proactive and not reactive. At age 10, we took our son to our local CAPS meetings and introduced him to some of the officers present. We have also taken him down to the local precinct and introduced him to officers, as well. Our hope is that proactively communicating his diagnosis will help just in case, God forbid, our son ever has an encounter with police. [Related: Chicago venues that cater to kids with special needs] Angry Black Parent vs. Advocating Parent One of the nuances of raising Black children in America is that as parents, we have to fight stereotypes as well. Every single ER visit, we have been met with the questions, “Does Dad live in the home?” and “Do you have the same last name?” Our answer, which is “yes” to both, has always been met with surprise and sometimes shock. I even had a nurse say out loud, “Wow, that’s a first!” We have also shocked hospital staff with our organized documentation of our son’s medical history, our knowledge of his rights as a patient, and his benefits under his insurance plans. This is very important; we never want to be in a position in which racial stereotypes prevent our son from receiving the best healthcare. Make sure you are always prepared; do your due diligence. In addition, our approach when advocating for our son has always been from a place of knowledge. Our goal is that we, as parents, can avoid being racially stereotyped as the angry Black parents and change the narrative to “strong parent advocates.” My husband and I use this approach in other aspects of our son’s life as well. Raising children is hard; raising a Black autistic boy in America is even harder. My husband and I do not have all the answers, and we take each situation as it comes. Yes, we get angry and scared. Yes, it sometimes feels overwhelming. Yes, we have shed many tears. However, no matter how disheartening, exhausting, and stressful the journey may be, we never lose hope.