April is autism awareness month but in our home, we live and breathe awareness, acceptance, inclusion, and understanding every single day. I adore my children and I began adjusting my life to accommodate my son way before he was officially diagnosed with autism. I saw the signs early on and I knew the only way to help him was to make certain changes in order to help him learn and develop in a manner that best suited him.
Parenting has been simultaneously the most rewarding and difficult role I have ever had. Being responsible for these precious little ones is truly a blessing and a role I never took lightly. I remember when I was pregnant, I envisioned so many different scenarios of what my relationship with my child would be like.
He/she would learn three languages (I'm Italian so he/she will learn how to speak Italian along with French because we live in a French province and of course English). We'd read books together, go to the library, create puzzles, go to the park, bake cookies together and all the wonderful stuff parents do with their kids.
My son was born and well before he was a year old, I knew something was wrong. His autism diagnosis was the beginning of a new chapter in our lives. Some of the dreams I envisioned were put on hold while others faded back to where they came from only to be replaced by new dreams, which were just as important and meaningful, if not more.
Of course, I always had good-hearted friends and family members ask me all the time "How are you? No really, how are you?" Always wanting to make sure that I wasn't too overwhelmed with raising a chid with special needs. My quick and usual response was, and still is, "I'm fine".
For the most part, I am. I am blessed in so many ways and I make sure to thank my lucky stars every day. I live life with an attitude of gratitude and understand full well how precious life is. What we have today is not guaranteed tomorrow, so I want to make today count as much as possible.
Yet, there is a part of me that isn't fine even when I say that I am. Being the parent of a child with special needs, "I'm fine" is just the partial truth.
You see, I am fine -- except for the paralyzing anxiety that suddenly creeps up in the middle of the night, seemingly out of nowhere, making it difficult for me to breathe and even more difficult to fall asleep.
I am fine -- except I worry about what will happen to my child, who has autism and who is dependent on me, once I leave this world. Who will look after him?
I'm fine -- except for when I see my child having a meltdown, struggling to make sense of an environment that is overstimulating and throwing him off balance.
I'm fine -- except I often feel isolated and alone, fearful of the unknown.
I'm fine -- except I worry for my child's safety when he is out in society. Will he be targeted due to his autism?
I'm fine -- until I panic about his next IEP meeting, knowing full well it will be another battle to secure resources and support that are lawfully due to him.
I'm fine -- except for the dark circles under my eyes, deceiving me and telling another story.
I'm fine -- but sometimes I need more than just 5 minutes to recharge and re-energize.
Raising a child is hard, and raising a child with special needs has even greater challenges that often leave parents feeling fatigued and depleted. Yet every day we find renewed energy and we continue to push forward and advocate for our children who cannot advocate for themselves.
I am fine -- because I must help my son find his voice so he can learn how to advocate for himself. He's doing that more and more every day.
I am fine -- because I must be present to help my son solidify his place in society.
I am fine -- because I have the opportunity to guide my son and help him become more independent.
I am fine -- because I was blessed with another day to help my son, to show love towards others and try to make a difference in this world.
I am fine -- because the alternative is simply not acceptable, it can't be, not now, not ever.
I am fine. How are you?
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