Special Needs Spotlight || Collin + Kenley

Hi, my name is Rebecca but I’ve gone by Becky most of my life. My husband Scott and I were both born and raised in Las Vegas, Nevada, have been married for 7 1/2 years and have 3 kids aged 5, 3, and 16 months. Before having kids I taught middle school in inner city Las Vegas and I try to use what I know about kids and learning in raising our kids, but in the thick of it, that isn’t an easy thing to do. I miss working and feeling like I am contributing to society on a bigger scale, but I am so grateful that I am able to stay at home with my kids. In all the busyness of raising 3 kiddos it is really hard to find time to do things that I love (reading, interior decorating, graphic design) but I try in the moments that I’m not falling over tired.

Miggy: Hi Rebecca and welcome. I’m so grateful to have you here on This Little Miggy today. You have 2 children with 2 very different diagnosis. Let’s start with your daughter, can you take me back to the day you knew something wasn’t right? Was this during an ultrasound, shortly after birth or sometime later? How long from that first inkling did it take to get a diagnosis and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Rebecca: The first half of my pregnancy was very typical, and I had no concerns going into my 20 week ultrasound. The technician confirmed the gender, and sent me back to a room to wait for my exam with the doctor. My husband came from work for the ultrasound, and since I wasn’t told anything by the technician, I told Scott he could head back to work, that he didn’t need to stay for the doctor part. The doctor came in and told me that there were some concerns, that her feet were clubbed and she had a choroid plexus cyst in her brain, which together are markers for some serious issues. The fact that I was alone left me in shock. I didn’t even cry until I was in the car, calling Scott. I wish the technician had told my husband he might want to stay, as she was standing right there when I told him to leave.

We were sent to a high risk specialist and had the longest week of our lives waiting for the results to come back if our baby’s condition was fatal (trisomy 18). That week, I didn’t even feel pregnant. I felt empty. Like I didn’t want to stay attached. When I got the call that the test had come back negative, I was alone, and I felt her move for the first time in a week, and in my mind I heard her say, “Mommy, I’m still here.” It was a sweet confirmation to me that she was ok, even though we knew that things might not be typical. We didn’t get her actual diagnosis of Arthrogryposis Multiplex Congenita until 18 weeks later after she was born and in the NICU.

After the diagnosis I had thoughts of would she walk? Would she be able to hold a cup or a pencil? Would people judge her? Look at her funny? Would she be in pain? Do we need to buy a new house that doesn’t have steps? Over time, those questions still exist, but I realize now that the answers don’t matter so much right now. We just take each day and each question as it comes and cross the bridge when we actually get to it. She has an incredibly strong spirit. She has an infectious smile that lights up any room and she brings so much joy to our lives. That is what matters. Not if we need to have a wheelchair accessible house 5 years from now.

Miggy: Now, sometime during all this you also had suspicions that your son was on the Autism spectrum. Or as you put it, you were in denial and wanted to “rule it out.” What were some of the first signs and symptoms of his diagnosis and how long did it take to get him diagnosed and how did you feel when his Autism wasn’t in fact “ruled out” but was now a very real part of him? And how do you feel about it now?

Rebecca: Collin has always been an incredibly easy going baby. No tantrums, a good sleeper, he was content to play by himself. His older sister would take a toy from him and he wouldn’t get mad. He would just find something else to play with. As he got older though he seemed to be more isolated than a typical toddler. At about 18 months old, we realized that it was really difficult to get his attention. I would call his name over and over again standing or sitting right next to him and he wouldn’t look up. And when he did finally look at he, he wasn’t really looking at me. He struggled to make eye contact. He was slow to walk (17.5 months before he walked consistently) and slow to talk (he only had a few words when he was 2.5). Lastly, he had an extremely limited diet and aversions to certain foods and textures. We got him into our state early intervention program when he was 21 months, but even at this point autism wasn’t on my radar. His therapists saw everything that I saw, which was a relief, to know that I wasn’t imagining things.

About 3 months after he entered the program his speech therapist mentioned a condition called hyperlexia. Collin had very few words in his vocabulary but he knew all his letters and their sounds and was fascinated with letters and numbers. This was the first time autism was even mentioned. The therapist was very gentle and not forceful when he brought it up, which I really appreciate. This was right at the same time that we were finding out about the concerns with my pregnancy so I couldn’t handle feeling like everything was going wrong. Over our next few sessions he suggested an evaluation. I really was in denial. I thought of autism as something being “wrong” with my child. I really bought into the social stigma of autism. And I thought there was no way that our sweet little boy was on the spectrum, as I had a completely skewed and incorrect understanding of what the autism spectrum really is. Our new baby was 2 months old when we finally got Collin’s diagnosis of Autism Spectrum Disorder-High Functioning. Even after we got the diagnosis I was STILL in denial. It didn’t help that the developmental pediatrician wanted to evaluate him again 6 months later as he had so many emergent skills that, if he developed them, would take him off the spectrum. Our insurance required we have him evaluated by a neuropsychologist. That was the best thing in the world for ME. The report and the way the doctor explained it help me to realize that some of the things that put him on the spectrum were some of his greatest strengths. It helped me learn that these quirks were not flaws to be eradicated, but instead simply things about him that we could accommodate for to help him handle the situations in his life as painlessly as possible.

Miggy: I’ve learned that most diagnosis exist on a spectrum, so can you tell us about each of your children’s needs and explain how they affect your day-to-day life?

Rebecca: Firstly, with Kenley, I think her biggest need is therapy, therapy, therapy. We have therapists in our house at least twice a week, and then I am also doing therapy everyday. We stay incredibly busy with appointments to see specialists as well. In Kenley’s first year she had 121 appointments with doctors or therapists. Other than that, she does pretty well, but then again she is a 15 month old that is the size of a 9 month old, so I can carry her anywhere she needs or wants to be. Other than being busy, I think the only other thing with Kenley that really affects me is the fact that since she was born I have not had a single full night sleep. She sleeps in a bar brace on her feet and splints on her hands and she can’t comfortably turn her head to the side, so it isn’t really safe, or easy, for her to roll onto her side or stomach to reposition herself if she gets uncomfortable sleeping. So I am up with her anywhere from 2 to 12 times a night to help her get back to sleep. I am lucky enough to be a stay at home mom, so these kids are my life. That is a wonderful thing, but also a little daunting as I feel like I have lost a bit of my identity in all of this. I’m working on it though.

For Collin, we have been blessed to have him in a special autism preschool through our school district that has helped him so much with his social interactions, which were lacking significantly. His biggest need that affects me day-to-day is his limited diet and sensory issues with food. I am constantly researching food aversion, creating and executing activities all in an effort to help him not have struggles around certain foods. I worry daily if he is getting enough nutrition for a busy 3 year old.

When friends ask me how I’m doing and how I do it all, my answer is usually that it isn’t nearly as hard as I thought it would be. Especially now that we are past the first year. Last year I had 3 kids at home and I had to make babysitting arrangements for all the appointments we had. I have my parents in town so that helped immensely. I was on the phone so much and working on endless paperwork for funding, but now that that is all taken care of, I have a lot more flexibility to my day.

Miggy: What are the biggest worries you face for your children, either individually or collectively? What are your hopes and dreams for them?

Rebecca: I worry that other kids will think Collin is weird and exclude him. Kids can be so mean and I turn into a mama bear that wants to protect my cubs. I also worry that his issues with food will be an area of ridicule from other kids when he feels stressed around unpreferred foods. I hope that he can build meaningful relationships. He is such a loving kid, and I hope that continues and can continue to reach outside of our family unit. I hope that we can foster his intellectual strengths (he is whip smart, already reading at 3 years old with no prompting from us).

I worry that Kenley will continue to have issues that develop over the years, and that she will need constant surgeries and treatment. I hope that she can continue to find ways to adapt to life in a world that is not built for her needs. She already does this so much. I hope that she can keep a happy outlook and not feel limited. I hope that we can provide a home environment that makes adapting as easy as possible (similar to how you remodeled your bathroom with Lamp in mind).

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Rebecca: My kids are seriously the light of our lives and they make me smile daily just by being their cute selves. If I had to pick something funny, Collin gets in the “zone” when he has a phone to play on. It is a regular occurrence for my phone to ring, he answers it, and immediately hangs up. Now, the only people that really call me are my husband, my mom, and my sister, so they know that if they get hung up on it is Collin and they will just wait a while and try again. It is a non issue, no hard feelings. They just say “I called earlier and got Collin.” and we move on with the conversation. Also, I can get weird looks from parents when Kenley in playing on the floor. She can bend her legs in ways that look incredibly unnatural, but since she can’t move her arms the way that most kids do, so if she starts to fall she can’t catch herself. I’m just used to picking up a slightly upset baby after she falls over, but other parents think it looks a lot worse than it actually is, since it looks like a total “timbeeeer!” moment.

Miggy: How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Rebecca: Collin thrives on praise and positive tone of voice. Talk to him like a happy person and you will get the best out of him. Don’t make a big deal if he gags in front of you. He can’t control the fact that you are eating a string cheese and he has an averse reaction.

I wish people would realize that special needs moms are incredibly aware of their children. Yes, I know that my child’s leg is bent in the wrong direction. Our normal is just very different. Unsolicited advice in public makes me want to roll my eyes. I have yet to go to a store without at least one person telling me that my baby looks so tired. I want to just yell that, “No, that is just the way her eyes are!”

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Rebecca: I’ve learned that life goes on. Just because I have a child that requires more work than feeding and diaper changes doesn’t mean that I can wallow, sigh, and expect others to feel sorry for me and make it all go away. This is our new normal and by moving forward each day, the tasks don’t necessarily get easier, but the weight of them is far lighter. I’ve also learned that you can only do what you can do. Ideally, I would be able to do Kenley’s PT/OT routine 5 times a day, but that just isn’t plausible most days. Some days I just have to allow that her playing with toys that are exercising her fingers is her therapy that day. I don’t beat myself up for not reaching the quota everyday. I’ll just try again tomorrow.

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