Special Needs Spotlight || Ashlee

Teal: Ashlee’s troubles really started to become obvious right after she started kindergarten. She started having terrible, violent mood swings. It was so scary to watch my sweet little girl suddenly start screaming, hitting, kicking, and biting only to burst into tears while hugging me and apologizing because she didn’t mean it. Soon after she started to stumble and seem weak, followed by loss of bladder control. That was a whole new source of fear and pain for us.

Now instead of focusing of the bad, we spend that energy making the best memories that we can for all of us.

Miggy: Your daughter has a rare diagnosis called Unspecified Neurodegenerative Disorder that results in Encephalopathy, Cerebellar Ataxia, Ocularmotor Apraxia, Dysphagia, Tremor, Insomnia, and Developmental Regression. Can you please educate us about your daughter’s condition and how it affects your family’s day-to-day life as well?

Teal: Her condition causes a lot of damage that you can’t see by just looking her. Her brain is being damaged a little at a time. The cerebellum in particular is being affected the most right now, and it causes global low tone and an inability to control her movements properly, even the muscles that control her eye movements. The doctors have described her muscle control as being similar to Muscular Dystrophy. She gets fatigued really easily, and uses a wheelchair for long distances. She also just got her first SMOs to help with her ankle stability as she walks around the house. She can no longer take anything by mouth, and gets all her feedings and medications through her Mic-Key button [also known as a g-tube or feeding tube]. She also has several mental delays. She’s 9 years old, but her understanding is that of a 3 year old and socially she is around 2.

On an added note, things haven’t been going very well lately. We had to make the hard decision (along with her specialists) to remove Ashlee from school. A few weeks ago she became frustrated and overwhelmed and she attacked a much smaller boy. She’s starting “home hospitalization,” so her teacher and therapists will be coming out to the house a couple of times a week.

Miggy: In addition, your son is also on the Autism spectrum. How has his care and diagnosis factored into the intense care you already provide for Ashlee?

Teal: We actually got surprised when we went to see Genetics last week. It looks like Bryn might not be on the spectrum. They have found an ultra rare mutation on the gene that can cause Essential Tremor. Ashlee and Bryn both have this mutation, and they think that they have the same disorder but affected both differently. That being said, it doesn’t change the symptoms he has and he presents very much like a child on the Spectrum and the treatment is the same.

Bryn having special needs doesn’t really make our day to day any harder, if anything it makes it a little easier. He and Ashlee are best friends. They do everything together, and constantly look for each other if they are apart. He is able to understand her in a way that no one else can. It’s really something incredible.

Miggy: What are the biggest worries you face for your children? What are the hopes and dreams you have for them as well?

Teal: My main worries for Bryn are how he’s going to cope with middle school, high school, and after. He’s amazingly smart, reading on a college and he’s only in the 6th grade. He’s in Gifted and Talented for his Mathematics. He’s also very trusting, and very easily hurt. It makes me really scared for him sometimes.

With Ashlee, I worry about being able to provide her with the medical equipment she’s going to need. We’ll also have to try finding the funds for an accessible van soon, because I’ll only be able to carry her for so long. The other worry (and probably the biggest) is keeping her comfortable. She already has nerve pain in her legs, and I desperately want to keep that under control.

My dreams are for Bryn to be able to become the robotics engineer he wants to be, and for Ashlee to have the best care possible. My biggest hope for them is that no matter what happens later in their lives they will always be happy. I know it seems simple, but to me it seems really important.

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?

Teal: I was trying to think of a really great story for this one, and Ashlee handed me one! My husband, Matthew, is the stereotypical overprotective Daddy when it comes to our girls. He’s the “You can never date,” and “no boys allowed” type. The other day Ashes comes marching into our living room, places her hands on her hips, and hollers at him “I have a crush, and you just need to grow up a notch and deal with it!” She then turned and stomped off. I was in tears!!

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?

Teal: I would have to say the biggest thing is ASK QUESTIONS! That’s especially important with kids! I have seen so many people stand back and not approach Ashlee because they don’t seem to know what’s going on (kids), or assume that we’re just babying her since you can’t tell she has special needs by looking at her (adults). I’ve found that when a child finds the courage to come up to me ask why she’s in a wheelchair, getting answers calms their fears and they start seeing her as just another child instead of someone to be feared or avoided. Unfortunately, other adults can be so judgmental of our situation without taking the time to understand it and they are losing out on getting to know an amazing girl.

Recently at Walmart, I was so happy to have a Mom encourage her daughter to ask us questions. She wanted to ask, but was afraid of hurting my feelings. It took everything I had not to cry, because once she found out more about Ashlee she relaxed and began to talk to her about dolls. For 15 minutes, in a supermarket checkout, Ashes got to be just another girl talking with a new friend. I could really use more of those moments.

Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to Ashlee and Bryn?

Teal: Besides Bryn (who’s 11), she has a sister named Eslyn (13), and another brother named Jake (19). These kids are probably the most important support network Ashes has. They’re always there to comfort her, play, watch a movie, and even be her advocate.

Eslyn has noticed other kids being standoffish with Ashes, but she doesn’t wait for them to come ask questions. She’ll go and tell them that Ashlee is a “very special person”, and that they should come talk to/play with her. She’ll answer their questions, and even stand up for her when she needs too.

Last year, our oldest Jake said that he wanted to talk to me about something. Mom worries immediately kicked in, but we sat down on my bed and I stayed calm. He told me that he worried about what would happen to Ashlee if anything ever happened to Mom and Dad, or when we were older and couldn’t care for her ourselves anymore. He wants to take care of her. He wants to make sure that someone that loves her is always there. He now takes the time to learn all of her equipment and medicines, therapy schedules, all of it. He has certainly made us proud.

Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?

Teal: I would tell them the same thing I would tell myself. You can do this. It’s going to be a long road. Sometimes it’ll get hard. Sometimes you feel like you can’t anymore. DON’T GIVE UP! Other times will make you laugh, or cheer, or cry happy tears. Special kids need special love, and no one can love them better than you. It’s all worth it, I promise.

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

Teal: The biggest lesson I’ve learned is to take the time to celebrate the small victories, both hers and mine. Find the bright spots in the dark times, and always look for the little moments of joy. Those are the things that get me through the tough days.