To the many parents who have children with special needs, I share with you my journey…
First, I have some emotional but very serious questions. Do you ever think to yourself, “What is in store for my child’s future?” When parents talk about college for their kids, though it may be early, do you think, “Will that even be an option for my child?”
Or even along the lines of, “Why, God? Did I do something wrong? Give too many vaccines? Should I have breastfed? Was this because my child was born premature? Am I being punished for something I may have done? How does my child feel?”
These are just a few of the many questions racing through your head, after finding out your child is diagnosed with delays…just know, you are not alone.
Before I answer these very valid questions and deep concerns you have every right to harbor, let me also ask you this. Would you think someone like me, who graduated at the tender age of 22 with a Master’s Degree and a 4.0 GPA, would make you say to yourself, “Oh, she was obviously diagnosed with PDD at two and a half years old” or “she clearly got seven years of speech therapy, occupational therapy, physical therapy, resource room (special education classes), and two hours of tutoring after school, six days a week”? Probably not right? And yet, all of that is true.
Yes indeed, these are just a few of the many pieces that are part of my journey. I was fortunate enough to be raised in a great school district on Long Island, where supporting our children with special needs is a priority. Without my district’s services, I don’t know where I would be today.
I already know the million-dollar question you’re thinking, how did you get from start to finish? How did you go from having an endless list of services as a child with special need, to “crossing the finish line,” so to speak, and feeling on top of the world? There’s an endless amount of supportive advice I can give, but through my personal and professional experience regarding this particular topic, speaking through the eyes of the child, my eyes…to the worried, loving parents reading this, I’m going to keep it as clear and concise as possible.
First, know that denial is NEVER okay! Please advocate for your child, because very often he/she can’t advocate for himself/herself. It is also important to show him/her that being different is okay. My parents always said I wasn’t ordinary…I was extraordinary, and you know what? So are your kids! Cut the “Dis” out, and you have ABILITIES! Not Disabilities! It’s all about perspective.
By being in denial about the accommodations and services your child needs, you’re not only letting him/her feel ashamed to be who he/she is, but you’re also doing a disservice to your child. By not getting your child the proper support, they will not be able to develop into the best versions of themselves. This will only result in creating more obstacles for your child in the long run. A solid support system is essential for a positive outcome!
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Second, consistency is key. It is important to give whatever services your child is receiving or whatever program your child is attending, a FAIR CHANCE TO WORK! There are so many parents who don’t see instant results, and are so worried about their child not making progress, and as a result, they constantly change their child’s learning environment. Unfortunately, the interruption of services and changing of programs often has a negative and at times, regressive effect on the child.
Children do well with consistency. They have comfort in knowing what to expect in their daily routine, as well as who to expect as part of these routines. With this being said, this consistency allows you as their parent…as their advocate, to have a clearer understanding of their overall progress when having consistent routines. This will help you keep track of their progress. It won’t happen overnight, but have faith, trust the process, and find the program that best fits YOUR child.
Lastly, please make sure not to confuse your child’s delays with his/her personality. I’m a soft spoken, gentle, mellow person. I didn’t speak until the age of four, and to this very day, I’ve been told I speak at a very low volume (something I’m trying to work on). Being a child with special needs, this could’ve be mistaken as having some sort of disability in not being able to verbally communicate.
This was absolutely NOT the case! The point being, make sure to differentiate your child’s delays and his/her personality, and ADVOCATE those differences to their teachers! It’s so important to look at the whole picture when getting a game plan for how you’re going to help your child progress in their development as best as they can.
To my worried parents reading this who are currently in the same shoes my parents were in 20 years ago: though you may be feeling uncertain and worried…scared, drained, angry, and a rollercoaster of other emotions, just know you are definitely not alone. Also, know it can get better over time!
Having been so fortunate to grow up in such a great school system and having strongly progressed through my journey, I now advocate for children with special needs, giving inspirational speeches to parents, teachers, and even the children themselves, “through the eyes of the child.”
I’m also an educational consultant and freelance writer, all because of where I started out in my journey. Although it wasn’t an easy start, I’m proud of how far I’ve come. I am living proof it certainly can get better, and the light at the end of the tunnel, can be bigger and brighter than you ever imagined. However, this is far from the end of my journey. This is just another chapter ending, and even better one beginning.
A grateful child, who is a product of early intervention services
This article was featured in Issue 102 – Supporting ASD Needs Everyday