Special Needs Angel

Madeline is real and vulnerable and shares her experience about raising a son with special needs and the challenges that come with it.

Madeline, thanks for being on my series on special needs children. Please tell my global audience a little about you. 

My name is Madeline. I am married to my wonderful husband Gabriel for 28 years.  We have 4 children and 5 grandchildren.  Our youngest son Daniel has Down Syndrome and is the happiest person I know who loves music, dancing, and the drums.

As a mom, what did it feel like to find out your son has Down syndrome? 

To start with, we did not find out our son had Down syndrome until he was 4.5 months old.  There were some concerns during my pregnancy about the health of our baby, but either way, it didn’t matter to us as abortion was out of the question.  So, when Daniel was born, he was thoroughly examined by doctors and we were sent home from the hospital with a “healthy” baby.

Since this was not my first child, I had some concerns about Daniel’s behavior as a baby and after several visits with our family physician, we were referred to see a pediatrician.  On our initial visit, we talked about the concerns we had and he recommended we do a chromosome test to determine if Daniel has Down syndrome.  On our follow-up visit, it was confirmed.  Needless to say, we were very surprised, shocked and heartbroken.  And so, all the appointments with doctors, specialists, and therapists began.

The first thing we needed to do was see a pediatric cardiologist as some babies born with Down syndrome have heart issues.  We were very grateful to find out that Daniel has a perfectly good heart.  However, visits continued from there.  Daniel has seen Ophthalmologists, Audiologists, ENTs, Occupational and Physiotherapists, Behaviour Therapists, Speech and Language Pathologists, Infant Development Specialists, and Psychologists.  When Daniel was younger, the appointments were more frequent, but as he grew older, they lessened.

Sometimes in life, there are things that we cannot change, it ends up changing us, how has your life changed? 

Well, Daniel became my full-time work.  While dad worked to support the family, I became “Director of Domestic Operations.”  Not only was I a mom, but I was also Daniel’s mom; I was his teacher and therapist.  However, while I was teaching him, he also became my teacher, and still continues to be.  The biggest lesson that Daniel has taught me is frankly to enjoy life, every minute of it.  Daniel is naturally happy, and content, and is perfect in every way.

Help me understand the discrimination in our society towards special needs children, education, care, and how can we make it an inclusive society.

Everyone fights for inclusion, and so did we, especially when it comes to Daniel’s education.  For the most part, primary school was just OK but High School was another story.  However, in saying that, it really does depend on the teacher (the individual, the human put in your child’s life).  And this doesn’t just apply to teachers but to any profession.  I don’t want to get too political but being involved with a special needs child brings value to everyone.  It teaches you compassion, kindness, patience acceptance, and forgiveness among other things.  It truly gives you a perspective of the bigger picture of life.  You see, true happiness doesn’t come from wealth, fame, or status.  It comes from the simple things in life, enjoying each moment without worry.  It’s saying please and thank you and I’m sorry.  It’s like the old saying goes “do to others as you would have others done to you.”

How can we be more sensitive to parents with special needs children? 

Treat them and their children like average human beings.  One of my biggest pet peeves is when people ask me a question that Daniel himself can answer “he talks, and he can tell you” I often tell people.  For example, when we order at a restaurant, ask him, he can tell you what he wants.  If he needs help, he’ll let us know.  Sometimes people don’t understand what he says as his words may not be audible, but give him a chance and don’t ask me, ask him.  He’s an adult and before you assume, he doesn’t understand, give him the benefit of the doubt.

What advice would you give to parents with special needs children? 

Honestly, just treat them like you would treat any of your other children.  Personally, we decided on no excuses from the very beginning.   He’ll learn just like our other children did.  We used different teaching methods but taught the same values.  We believe all children should learn how to behave and get along in society, as they’re part of it, such as what is acceptable and unacceptable.  To us, it was more important for him than academic skills, like reading and writing.  Don’t get me wrong, education is definitely important but, in our opinion, behavior and conduct are more important.

Oscar Wilde said ‘What seems to us as bitter trials are often blessings in disguise’. Do you relate to this or was it a figment of his imagination? 

Daniel is truly a blessing but not in disguise.  Simply a blessing!!  That’s all.  A good friend describes him as an Earth Angel, and that’s exactly what he is.

Talk to me about your faith, the journey, but also the practical aspects of your faith as a mother dealing with your special needs child. 

Our faith has always been and continues to be the foundation in our home.  It’s what has kept us together and allowed us to be better parents to Daniel, in being able to meet his needs.  It has made us stronger as a family.  Given the news that your child has special needs is difficult, and some parents just don’t know how to handle it.  They don’t know where to turn for help, so it’s easier to just walk away.  Sadly, I know all too well that there are many single moms and dads out there raising their special needs children alone.  Our faith has been the glue in our family and has kept us grounded.  And we truly believe that God doesn’t make mistakes.  Daniel is not a mistake.  He is meant to be here, this time, in this place, and with us.  He’s here to teach; he’s simple, happy, and content.  He really is. Our lives have been richly blessed, I would not change it or him for anything.  Again, our faith has been and continues to be our foundation.

I am sure there are a few things you want to change in terms of laws, access to health care, food, accommodation, and other things. If you were talking to your MP or the PM what would these be? 

Daniel has been out of school for almost 3 years and since then, it has been very difficult to find things for him to do.  The gap between the time when they leave school and when they get assistance of any kind is far too wide.  And I know I’m not alone.  I’d like to see that gap reduced significantly so that these young adults can have something to do and be productive individuals in society.  And when you do get the funding, far too many programs out there have a very long waiting list.  We need more and better day programs that are inclusive and not just a babysitting type of program.

Also, there are so many forms we had to fill out and still do, form after form after form.  Perhaps there should be an online resource for individuals or agencies to have access to about your child because, for the most part, the information is very repetitive.