There are few “jobs” in this world as difficult — and as rewarding — as being a parent. Life and destiny hand you a small human and an unpredictable 18 to 85 years, God willing, to create a kind person and to lay down the foundation for a future that is full of potential and kindness and joy. That in itself is ridiculously challenging and can be incredibly lonely. Factor in a child with special needs and you can feel absolutely alone. I love the idea of supporting other parents and offering a sense of community for those of us who face battles daily and mostly behind the scenes. 

Through this new series, “Special Edition”, I’m going to introduce you to some of the most incredible parents who are raising kiddos with a little extra something — an extra chromosome, perhaps, or an extra diagnosis; maybe it’s an extra health concern or an extra behavioral setback. These mommas (and dads, too!) are fierce, strong, resilient and willing to give their all and then some. I hope you learn a little bit about them and their  children; it is my wish that your eyes are opened and your hearts are warmed. I hope that if you too are facing challenges and difficulties in your everyday life as a parent, that for one brief moment while reading this, you no longer feel alone. 

Today’s blog is all about Elizabeth, a 6 year old who rocks her extra chromosome!

Tell us about you and your family. 

My name is Maegen and I’m a mom to Ryan (9) and Elizabeth (6).  I work as an assistant teacher in special education while I work on my degree in secondary biology education. We live in Wyomissing, PA.

 

Who are you specifically talking about today? 

I’m talking about Elizabeth, who rocks her extra chromosome.

 

Tell us about Elizabeth!

Elizabeth is 6 and in first grade. She loves to draw (many times on herself and the walls), play outside, go camping and swimming.  She is fiercely independent and her favorite word is “no.” We call her our sour patch kid as she is sweet and sour but always charming.  She has a good sense of humor and makes others laugh. She will play pranks if given the opportunity.   

 

What diagnosis(es) do/does your loved one have? 

When Elizabeth was born, I knew right away she had Down syndrome but they suspected she had it before she was born. Around the age of 3, we started to notice symptoms of ADHD. When she was 5, she was officially diagnosed with ADHD (she is energetic and struggles with paying attention) and ODD (she is defiant and usually responds with ‘no’, will drop to the ground and refuse to do tasks).  It can be difficult because she is at a size that makes it hard to carry her when she refuses to perform a task, like walking to the car so we can go somewhere. She is also too big to place in the seat of a cart so shopping can be hard at times.

What was your initial reaction to this diagnosis? What was your greatest fear?

I was fine with the Down Syndrome diagnosis.  I did cry for her for a while after she was born because I was concerned about how other people would treat her or if they would take advantage of her.

 

How does this diagnosis affect everyday life for this child? What are their greatest struggles? 

Elizabeth struggles in school in many ways. She refuses much of the work and tries to elope at times.  She struggles in the morning, even with sufficient sleep. Many mornings I have to dress her.

 

What do you think is the biggest misconception with your child’s diagnosis? 

That she can’t learn and that her behavior is due to the demands put on her in school.

Does your child have any other siblings? How much do they know about his/her diagnosis? How, if at all, has it affected them? What impact do you think it will have on them longterm? 

Elizabeth has a brother, Ryan. Ryan knows that his sister has Down syndrome because she has an extra chromosome. Ryan struggles to handle his sister’s behavior at times and he forgets that even though she is physically 6, she is closer to a 4-year-old, mentally.  I think that Ryan will treat others more compassionately as he gets older and have a better understanding that being differently abled is no reason to treat someone any less of a person.

 

What does an average day look like for you and your child?

Mondays through Fridays, I wake up around 4:30am and I wake Ryan and Elizabeth up at 5:45. Ryan gets himself ready and I attempt to dress Elizabeth as she gator rolls, swats and grumbles at me.  I then bribe her with my phone and promises of cartoons on it while we try and get out the door around 6:30am for daycare. Ryan helps by carrying her bag as she protests going into the school. When we get inside, Ryan takes off to an activity and Elizabeth searches for her partner in crime.  I pick them up everyday around 4:30pm because Elizabeth has TSS who helps her at daycare with skills and behavior. We get home and do homework except on tuesdays and thursdays when their dad picks them up for a visit and then drops them back off at 7:30pm. I have them get ready for bed everyday between 7:30/8pm. 

What areas are the hardest — everyday functions, education, employment, behavior, etc — and why? 

Due to Elizabeth’s issues with ODD and ADHD, she struggles to pay attention. Medication has helped some but we’re still working on it getting better.  Her behavior impacts her education right now. She can do many things herself, like pouring a drink, using a fork and spoon with ease, expressing her needs verbally, She is capable of dressing herself and putting shoes on but she chooses to be difficult.

 

How has your life/ your parenting changed because of this journey? 

Parenting hasn’t changed too much. I treat Elizabeth like a typical child for the most part.  We have the addition of a BSC and TSS but it’s really not too different at all.

 

What is your greatest wish you have for your child?

That she would be treated with respect, be given high expectations and not seen for her disability first.

If people would like more information on this, where can they find it?

The best thing they can do is to talk to a parent who has a child with DS. I’ve never minded talking with people about DS and what life is like or a bit of the science behind it.

 

Share whatever is on your heart right here, my friend.

I’ve had to fight to keep Elizabeth’s placement in the general education setting. I’ve experienced due process and outward retaliation from the school district and administrators when I exercised my legal rights as a parent. I’ve had to persevere and fight hard. I know the amount of stress it has brought is 100% worth it. I feel more parents need to come together and support one another even if inclusion isn’t something they want for their child, we should support each other.

Our fights are as individual as our children are.

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See more Special Editions here!

Please note: We are not medical professionals or scientific experts. We are providing a human-based glimpse into daily life with certain diagnoses. For more information, please seek a professional affiliated with this condition.