In just a couple of months, my oldest one will be 12 years old. I still vividly remember the day he was born. I was scared, sad and confused. In those days I really wanted to believe that Emir was special, that I was special, and that was the reason why God was testing me through him and his special needs. I wanted to think that he was an angel, and despite not wanting to, I used to believe that his future wasn’t as bright as he deserved.
When he started school I didn’t want to discuss his options because I honestly didn’t know he had any. I was happy to hear that he was happy but I didn’t want him to be pushed. I didn’t want him to realize that he wasn’t able.
Twelve years later, as Emir is getting ready to start a new adventure at school as a teacher assistant for pre-k students, I look back on those days with tears in my eyes. Sometimes I blame myself for not knowing and for all for the mistakes I made as I stood in his way on the path to where he is today. Other times I just accept that we all needed to walk those steps in order to learn, and in order to grow up, together.
These are twelve things that I’ve learned in these twelve years of raising my child with special needs:
- Educate yourself in order to become the best possible advocate for your child. You need to understand your rights in order to make the law work in favor of your child.
- Emotions are inevitable. That said, they can be dangerous if you let them lead your life. Draft a plan, write down your talking points, and stay focused on your goals. Facts are stronger than tears. Calm communication is much more powerful than heated discussions.
- Go against the labels – all of them – both the ones you feel are bad and the ones you feel that are not bad enough. Prejudice sometimes looks mean, but other times, it looks like pity. Look for real equality.
- Less therapy and more natural inclusion. Most of the things that your child learns in a therapy session are natural skills that he will gain in real life, and I’m not only talking about school. Through a sense of community, involvement with family members, and opportunities learn hands-on, your child will feel their own right to belong and will learn how to navigate life, naturally.
- Speak up. Silence gives others the power to make decisions on your behalf and on behalf of your child.
- You are your child’s best advocate. With any luck, you’ll get to know amazing teachers, therapists, and educators; however, not one of them will work as efficiently alone as they would in collaboration with you.
- Don’t give up on your dreams. Many times you’ll find yourself sitting at a table along with a dozen professionals that are trying to explain your child’s limitations according to his or her diagnosis. This is just another student for them, but this is the most important child to you, and you deserve to have a dream to work toward.
- Don’t settle for less. When it comes to your child’s future, he only has one, and every day counts toward his success.
- Give him a chance to try. I’ve been there so I understand the feeling when your brain is telling you “he can’t do it” while your heart is fighting back by asking you, “why not?” Throughout the years I have learned to listen to my heart, and the most surprising thing is that he always can. Maybe not in the typical way or maybe not as expected, but in his own way, he really can do anything.
- Don’t be afraid to knock on doors, otherwise, they will probably not open. Many times in my life I have gone places and I have stopped at the entrance just to catch my breath. My biggest fear in the world is being told that my child is not welcome due to his disability. It has been hard but I every year I’ve become stronger, wiser, and more confident. I still cringe at the idea of seeing any of my kids rejected, but I know that I need to knock in order to know and to take action.
- Teach him to feel proud of himself and to represent diversity. Our children need to be seen, need to be respected, need to be counted, and they have the right to occupy that personal space that belongs to them. Special activities are fine, but typical activities and real inclusion is the only path to the normalization of disability.
- Empower him to become his own best advocate. Give him opportunities to learn. Believe in him. Brag about his achievements. Be proud of him, so he can learn to be proud of himself. Self-confidence is a vital component of growing up and being successful with or without special needs. Your child deserves that.