The Biggest Challenge I Face As A Special Needs Parent
My son Jayden was born prematurely. He reached most of his milestones late, but we always assumed he did so because he was premature. Until he was two-years-old he hadn’t said a single word. After the evaluations and autism diagnosis, our life suddenly changed. We knew nothing about autism at that time. Each day we are learning something new about this condition. We believe we know a lot, yet is never enough. All his teachers and therapists say Jayden is very smart but needs help to express himself. His attention span is also very poor. So at the beginning of this year, we finally looked into other ways to help him and agreed to give Jayden medication to help him focus. There were so many things that we didn’t think we would do when it came to Jayden. I resisted giving him the medication at first but now I see some progress. As a parent, we always have to make a lot of decisions, as an autism parent, the decisions get harder.
This is Lufti…
Where do you live?
New York City
Your children’s names and ages
Jayden 6, Jade 2
5 words that describe you:
Loyal, strong, trustworthy, fair, caring
How do your children inspire you?
My kids are bold. At this point they see the world as a beautiful, kind, friendly place. They do what kids suppose to do. That inspires me to not too care about what people say about us.
What is an activity your whole family loves to do together?
We have three. A day at a beach is a happy time for us. Jayden loves music, he sings and dance to songs that he likes. I taught him ‘Twinkle Twinkle Little Star’ on his xylophone toy and he picked it up in half day. So our other fave activity will be dancing, jumping and make silly moves. The last one is cuddling in bed on Sunday morning, it never gets old!
How do you survive a tough day of parenting?
I like to walk. It helps me think and calms me, but sometimes I can’t leave the house. So I usually find a place that I can be alone, take a deep breath and cry. After that, I pray.
What’s the one thing you wish people knew about Jayden?
Jayden is sweet, funny and very smart. Please take time to get to know him, he’ll surprise you. He might not answer your question but give him time and just be a friend to him. He has all the knowledge he got from school and therapies in his head but he needs help to get them out of him. So if you had a chance to know him please help him, talk to him. Once he knows you he’ll give you lots of hugs!
What is the one thing your child can’t live without?
Jayden is in the phase of knocking two random objects, this is his way of stimming. There are no specific things. This week at home he knocks a car and a book. Last week was his hammer toy and a board. When we enter a shopping store like Target, he’ll grab two things he sees first that fit in his hand. As long as he has something to knock, he’ll be fine.
What’s the one thing you would drive back to get if you forgot it when out with your kids?
I am not really sure. We hardly ever leave something at home, in fact, we always carry too much 😅 But I probably can say we have to have orange juice, snacks (especially for Jayden) and at least one of our iPhones.
Do you make time for self-care? If so, what is your self-care ritual?
I make sure to cut my hair with a very good hairstylist. I would like to do more exercise, but I hurt my foot and I have to stop until I get my custom insole. I try to eat healthily and balance the nutrients.
What is the last thing you purchased for yourself that made you really happy?
A kitchen scale. I am currently learning to bake for my family. Jayden loves chocolate like his dad. Seeing Jayden and Jade’s smiling face covered with a chocolate treat I made makes me very happy.
What advice would you give to a (new) special needs mom?
There’s nothing wrong with your child. He/she is different yet the same and not less. It’s not anyone’s fault, your child was born this way. Educate yourself and be the best advocate for your child. Reach for help and ask everyone. On a difficult day you may think why your child is not making a progress, but always remember small progress is very big for them.
What quote do you live by?
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