Special Needs Spotlight || Tucker

Hi! My name is Kristi Campbell, and I live in the DC area with my husband Robert and our son Tucker. When he was a baby, Tucker seemed to meet all of his milestones in a timely manner, and we weren’t concerned about his development at all.  It must have been when he was about 15 months old when my heart first began to whisper worries to my brain. “Shouldn’t he be talking more?” I thought. “Could he have autism?”  At that time, I read some books about autism, and decided that my son didn’t really fit the descriptions of the other children.  He didn’t have any feeding issues, or flap his hands.  Everybody in my world reassured me that boys speak later than girls, and, because he hadn’t been in daycare, and was home with me all day, that he may speak even later because he hadn’t been in a situation where he needed to communicate.  Less than a year later, we’d be undergoing evaluations from doctors, Early Intervention, and special education teachers.  While we do not have a medical diagnosis of autism, Tucker has a severe speech and language delay, some sensory issues, ADD, anxiety, and some OCD. So basically, the spectrum exists but a medical diagnosis does not. Tucker graduated from a Preschool Autism Classroom this spring, and will be mainstreamed (with support) for kindergarten next year. He just turned five years old, and makes me laugh every single day.

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Miggy:  Hi Kristi!  Thanks for being here today to share your story with us.  Like many families you have a son who is, as you say, semi-diagnosed with autism.  At what age did you start noticing some of the signs and symptoms of autism?  And even though you’re technically undiagnosed, do you remember when your Dr. confirmed your concerns as a legitimate medical condition?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? Kristi:  Looking back, I definitely knew something wasn’t quite right far before a doctor did. At my son’s two year check-up, I mentioned that I didn’t think he was speaking enough. The doctor asked me what his longest sentence had been, and, because just that week, Tucker had said “truck fell down,” I shared that. She assured me that a three-word sentence was good for age two. It took another 18 months for Tucker to use another three-word sentence. I remember our first Early Intervention evaluation like it was last week. Tucker performed awfully on all of the tests, hid under a chair, and spent a good amount of time fixating on a dirty spot on the window blinds.  I remember leaving there feeling sad, defeated, and a little bit angry because surely Tucker didn’t always act that distracted!  I was devastated and worried about what this would mean for his future. Would he feel stupid? Be made fun of? Would he ever be able to live alone? Since then, I’ve realized that he’s perfectly himself, and exactly who he’s supposed to be. He is funny, kind, a world-class smuggler, and making great progress with social skills, language, and imaginative play.  He’s a blessing, and he lights up my world. I read something I wrote called What it Feels Like to be a Special Needs Mom for the Listen to your Mother DC show. You can watch the video here.  I think it explains my initial fears and where I am now fairly well. Miggy:  The good news about autism is that is widely recognized, and there are so many resources for parents and families who have a loved one with autism.  Of course the range of behavior and a persons ability to function still vary greatly, can you explain your sons symptoms and how his needs affect your day-to-day life?   Kristi:For the most part, we lead a pretty average life. We go to playgrounds, and splash pads, and play hide-and-seek for longer than sometimes seems possible. The biggest issue that we work on is watching Tucker closely when he’s in a stimulating environment with a bunch of children. He has a tendency to lose his words completely when he’s really excited or angry. And, if, say, a little boy takes his toy from him, or bumps into him, Tucker is likely to lash out. It’s really important that we keep an eye on his excitement and anxiety level so that this doesn’t happen. He’s much taller than most children his age, and we obviously don’t want him to hurt anybody. I think the hardest part is balancing the knowledge that all children “fight” a little bit, and need to work out their issues, with sensing when Tucker may need to take a break. Miggy:  What are the biggest worries you face for Tucker?     Kristi: That he’ll be too hard on himself. That it will be difficult for him to be self-compassionate. Right now, he doesn’t really know that there’s anything different about him. Next year, he’ll be in a kindergarten class with 24 other students, 20 of whom are typical. I worry very much that he’ll be bullied, or feel badly about himself. We’re starting to recognize that he realizes that he’s hard to understand at times, and I don’t want him to shut down for fear of being misunderstood, or not understood at all. Miggy:  There are benefits and drawbacks to having a diagnosis that you can’t see from the outside.  So as someone who deals with the judgement and difficulties that come from an unseen diagnosis, what would you like other families and people to know when approaching or responding to your son?  Is there something you wish other people knew so as to avoid awkward or hurtful situations?   Kristi: I wish people weren’t so afraid of developmental delays and autism. I can’t begin to count the number of times that people have said things like “oh, all little kids do that,” “he’ll catch up,” or even tell me that they don’t think my little boy has autism. I know that they’re trying to be helpful and encouraging, but telling me that Tucker will catch up makes me really sad.  He may catch up in some areas, but he will have challenges that are unique to him throughout his life, and I want for the world to accept that. I feel like them dismissing his challenges has potential to later make him feel badly about himself, and even wonder why he hasn’t yet caught up. People also have a tendency to think of autism as it relates to the one kid that they know who has it. People on the spectrum are unique individuals, with wildly differing abilities and personalities. I hope that one day, everybody will be more accepted for exactly who they are, rather than how they relate to others with their special needs. I actually wrote a post about this recently  in which I asked a bunch of the moms from Tucker’s preschool autism class what they wish everybody knew about their children. Miggy:  If you could say something to the mom who just starting on this autism journey, what would you say?   What would you say to yourself if you could go back in time?     Kristi: I’d say that life will be different from how you’d imagined it. That your worries will be different, likely louder, and that there will be times when you feel like you can’t do it, that you’re not equipped. I’d also say that you’re doing it all perfectly fine, and that you’re enough. That life will be different from how you’d imagined, but that it will be just fine. It will be beautiful and messy and scary and brilliant and all yours. I’d remind new mothers (and myself) on this journey to relish the moments, and to be thankful for our perfectly imperfect kids, and the perfectly imperfect us that we are. Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom? Kristi:  Wow, that’s a tough one. I’ve really learned a lot about myself, and I think being a special needs mom has made me more empathetic globally.  While I’ve never been prejudiced or judgmental, I do remember moments in my past when I’ve pretended not to see certain things because I didn’t know what I was supposed to say, or do. For example, I felt like I needed to pretend to not see a wheelchair, or a tantrum, because I wasn’t sure what was okay to “see,” if that makes sense.  Now, I always always take a few moments to chat with the special needs adults who work in our grocery store (and have become especially great friends with a wonderful woman named Tracy because of it).  When I see a child behaving strangely, or disruptively in public, I take time to give his tired looking mama a smile, and hope to convey the message that we’re all in this together.  Being a special needs mom has made me realize that everybody has a story, and it’s one that none of us really know. So if I see something I may have previously formed an opinion about – like how a child is acting in a restaurant, I know that I have no idea what happened five minutes or five years prior. *************** Thanks for sharing your handsome boy Tucker with us today. You said quite a few things that really stuck out at me. First, I love that you said you realize that Tucker is “perfectly himself and exactly who he is supposed to be.” I think most of us feel that way about all our children. And your parting thoughts about becoming more empathetic globally and yes it sometimes can be hard to know what’s OK to see, but like you I realize it’s all OK–wheelchairs, Down Syndrome, feeding tubes, trachs…it’s all part of the human experience. And you last line as it pertains to judging others, especially in the realm of parenting, “I know that I have no idea what happened five minutes prior or five years prior.” A-men! Such a great way to think about it. I love reading these spotlights week after week because I swear I will always need to remind myself to be less judgmental and more empathetic. I think just like physical traits we actually need to practice and train our minds and emotions to do what we would like them to do. Best to you and your family Kristi! As always if you or someone you know would like to participate in the Special Needs Spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com. Have a fantastic weekend! Hugs.