Many years ago, while working in our family owned preschool, I used to be in close contact with special needs children and their parents. I met desperate mothers that will get emotional easily, I met mothers that will work hard for their child’s well-being, mothers that, with time, I got to admire strongly. I always had deep empathy for these women and they were in my mind when I became a mother myself. Little I knew, not only that I was going to become one of those mothers, but that being in those shoes, will make me really understand those women tears.
My intent in writing this is not to create pity towards me or other mothers. On the opposite, with my words, I would like all the mothers out there to know that they’re not alone, to empower them and express my deepest admiration.
Let me start with defining what is special needs? The Merriam Webster dictionary defines it as: “Any of various difficulties (such as a physical, emotional, behavioral, or learning disability or impairment) that causes an individual to require additional or specialized services or accommodations (such as in education or recreation)”. This is a wide definition and it includes many conditions as: visual and hearing disorders and impairments, autism spectrum, dyslexia, ADD/ADHD, cerebral palsy, Down syndrome, developmental delay, down syndrome, speech disorders, OCD, physical impairments, multiple sclerosis, among many others.
There is an exact moment when a mother becomes a special need mom: is that moment when your instinct tells you that something is going wrong. This can happen during pregnancy, at birth or even years later. That moment stays with you forever and that’s where the journey starts. Then comes the long path of visiting doctors, psychologists, specialists, testing, therapies, research, schooling and advocating. The journey is long, and sometimes it seems to never end. It is hard, it’s scary and it’s stressful; but at the same time the process can be enlightening, strengthening and over all unconditionally loving.
For me, it started when I noticed that my toddler stopped talking at 17 months. Maybe at first, I was in denial as a defense mechanism: “I’m imagining things”, “I’m exaggerating”. Then came incredulity, thinking this is a phase, it would pass. After accepting that something was wrong, the next logical step for me, was taking him to the pediatrician. She told me it was normal for a kid exposed to multiple languages. However, something kept telling me there was more to it. That’s when I learned to follow my instinct, this instinct that was telling me deep inside that this was not normal. With time I was proved right and I was introduced to the special needs world.
This world is made out of angels and superheroes. I came in this place where I was received warmly, where these people knew what I was going through, given the fact that they’ve seen mothers like me hundreds of times. I understood that me and my child were not alone. I was easily able to have a feeling of belonging where my doubts and concerns where understood, by these people that have chosen to help other children as a career, and they do it by heart. They are real angels on earth and I am lucky enough to have encounter them. They are the teachers, aids and therapists that had genuinely helped my child. They don’t stop to amaze me every single day. They are loving and patient and enjoy his achievements as much as I do. I deeply respect them and they have all my admiration.
And then there are the superheroes: the mothers. Strong, loving and over all, determined women. Women that embraced me in their supportive village. I’ve seen them struggle, I’ve seen them crumble; but I’ve seen them come back up with the same or even more power. I’ve been there when some of them have carried their 80 pounds children to therapy because they didn’t have a wheelchair. I’ve been there when they had fed their kids through a tube or when they’ve ride with them on the slide so they can have the experience (thing that they can’t do on their own). I’ve witnessed the tears that appear after the constant complaints of teachers; or moms running after their kids in parking lots or streets, because they can’t control themselves or see dangers. I’ve seen them ride miles and miles to bring them to therapy, to find the right doctor or to try a new treatment. These women had taught me that no matter what, I should never lose hope and I should never stop fighting for my child. It is for them that I write this piece, they’ve inspired me and they have moved me deeply.
There’s no doubt that being a mom of a special needs child is a challenging experience. It can be very frightening, it can be frustrating and it is indeed physically and emotionally tiring. These kind of challenges in life can break you or can make you stronger. I know that this child was brought to me in order to evolve. My humanness [DEG2] sometimes makes me forget the teachings this experience has brought me, but deep down there’s that better person that I’ve become because of this. I would like to share with you what I’ve learn:
The importance to stay in the present moment.
The present is all that me and my child have. Going back into the why, in what I could have done different only brings me sadness and depression. I can’t change what happened. I only have the now. And probably the toughest one for all special needs mothers. That one thought that makes you stay awake at night: How will this child survive when I’m gone? That only brings me anxiety. And while I can think of a plan and I can start doing some things to protect MY child, the truth is that the future is a reality that is not here yet. Over thinking about the future, only brings me into a deep hole, and in that deep hole I can’t help my son. I work hard in the present with the resources that I have and trust that the Universe and God will pave the road toward the best for my child.
Choose love over fear.
When we go into fear, we find ourselves falling into the deep hole I mentioned before. Fear paralyzes and creates extreme anxiety, it doesn’t let us think correctly and make the best decisions. The good news is that we all have the ability to choose not to go into fear. Is hard, I know, it takes practice, but it is possible. When we experience in the deep love we feel for our children, it brings comfort and brings peace. There always will be love in our soul, we just need to focus on that. Focusing in love makes it easier to connect with ourselves and with our children and in this way walk together towards thriving days.
Learning about ego and insecurities.
Others comments, judgements, stares and unasked diagnosis and advise; have all triggered me at some point. These unpleasant feeling brought me an opportunity to go deep within myself and understand what are the wounds that are being touched. In this way I have been able to work on healing myself and with this be able to be less reactive and a lot more patient.
Cherish deeply the good and special moments.
Every gain this child has had, have felt like winning a marathon. Things that might seem simple to most people, as learning how to drink from a straw, saying his first phrase or jumping in one foot had all been glorious. In this way I’ve been able to understand that things don’t need to be big, glamorous or festive in order to be wonderful. Being witness of the simple things in life like the wonder of nature and life itself, brings joy to everyone’s heart.
My journey has just started and is not as rough as others. Still, I know that the challenges that await will bring me more knowledge and deeper understanding of myself. As for my child, I’ll help him in every step of the way, but I need to understand that he has his own path, different from mine, to walk in this lifetime.
Delia – Mother of 3- Conscious Parenting Coach- Psychologist