Dual Diagnoses: Living with Down Syndrome and Autism (ASD)

I have been asked numerous times about how Madeline has two diagnoses. One being Down Syndrome (T-21) and the other being Autism (ASD).

This is a great question and one that I even asked myself many years ago when she was little.

So lets jump into it!

Madeline was born with DS. Down Syndrome occurs at conception. We are all formed with 23 chromosomes from our mothers and 23 from our fathers. They all come together to form a new human being by mixing together and then separating again in there own individual way making 23 pairs of new chromosomes equaling 46 all together.

Imagen having 23 pairs of socks, that is what our chromosomes look like! Well in Madeline's case she has what is known as Trisomy 21: Meaning she has not just two, but three of the 21st pairs of chromosomes.

This is what Down Syndrome is, She has an extra chromosome! There is no rhyme or reason that this happened other than God giving her a little something extra. We all have 46 chromosomes, people with DS has 47. Our chromosomes make us who we are! Our hair and eye color, or personality traits, our body type and so much more!

DS does cause some delay's in speech and motor function, like low muscle tone. Along with some other complication's such as heart problems and sensory issues.

Autism or ASD: Autism Spectrum Disorder.

This is a neurological disorder. There is no known cause as to why this occurs in children, but is usually diagnosed at around the ages of 2 to 3 years old.

As my husband and I worked day in and day out on understanding Madeline's needs as a child with DS we started to notice she was also showing some other behaviors that didn't align with most kids who have DS. This was tricky due to the fact that we couldn't tell at first if her struggles were caused by DS or something else. People with DS grow to live pretty normal adult lives, still being able to have jobs, relationships, get a good education and so on, it may just take them a little more time than others to get there.

As Madeline became 3 years old her speech we were working on started to diminish and she stopped wanting to play with toys, interact with us or others, and not respond to her name. This was all very concerning and as a mother I got this feeling that something wasn't right.

I began to look into Autism, where I searched for signs hoping that my intuition was wrong.

Early signs of Autism can include: Loss of speech or no development of speech, loss of eye contact, inappropriate social interactions, compulsive behavior, repetitive movement, sensitivity to lights or sounds, anxiety, change in voice tone, and tics. Of course all of these can vary from person to person.

As all of these things began to line up, I knew I was looking at her having both. So was this possible? and the answer is yes, it's not as common, but it can happen. They are two different disorders but can occur in the same person.

We took her to a place to be tested from Autism, where they asked us questions about her behavior and things that we noticed. Then she was taken to a room where she was shown different toys and objects and they talked to her, asked her questions and played with her. As we watched the testing unfold, I could see that she didn't play, she didn't interact, or engage.

We were given given the diagnoses of severe non-verbal Autism.

Dealing with one disability is a struggle, dealing with two was a whole other playing field. I felt like we had already been walking in a world of unknowns, now it felt like we had went to a different planet. All I knew was that I was going to do whatever it took for my child to be accepted, understood, seen and heard. We work everyday on speech, sign, communication, daily living skills, social interactions, directions, feeding, and all around independent behavior. With the right therapists, teachers, doctors and support of friends and family you can help your child to overcome a lot of there obstacles.

Navigating to very different worlds can be overwhelming at times, and there are moments where I wish I could see through her eyes for just one day, to know and feel what she is going through and what the world looks like to her. As parents of kids with special needs we become emerged into the world that they live in, being the guides between there world and ours. Knowing that they have different needs, while also not treating them as if they are different is key.

Showing patience, understanding and encouragement can really help your child to grow. If you or someone you know has just received a new diagnoses, and you are worried and scared for the future. I'm here to tell you that your feelings are valid, but with that worry comes strength and determination to help your child become the best they can be. Reach out, ask questions and don't ever be afraid to stand up for your child. You are your child's voice and you were given that role for a reason.

If you enjoyed this blog stay tuned for more or check out the other blogs on this website. Have questions? or want to know more about a specific situation you are looking for answers to? send me an email or FB message and I will be happy to share more of my experiences with you!

Fingingthepieces25@gmail.com

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Thank you!

Meagan and Madeline Friend

Finding the pieces: Madeline's Journey.