Autism Awareness Month: Lessons Learned from Zion

If we were all not living through these unusual circumstances associated with COVID-19, this month would have featured a lot of festivals, walks, and other activities that seek to bring awareness to and dispel myths about autism.  Education about the diagnosis of autism and shining the spotlight on the individuals who have been diagnosed with autism is what this month is all about.  As Autism Awareness Month comes to an end, I started to think about my 12-year-old son, Zion, who was diagnosed with autism at the age of 3 and a few of the things he has taught me.

Everyone has hidden jewels.   If you ever met Zion, in the first ten minutes, you could probably tell me right off the bat the things he does not do.  He has a hard time making eye contact, he is not going to engage you in a long conversation, and he has a hard time understanding social cues and tones.  Years of advocating for Zion has made it to where I am his spokesperson, always trying to give people a different impression of him.  Zion loves to learn, my son is a fantastic writer, and my son has an eye for photography and videography.  My son is more than his diagnosis and people, in general, are typically more than what they initially present to the world.  I believe that there is something positive in everyone – you sometimes just have to take the time to find those hidden jewels.

Don’t Sweat the Small Stuff.  Zion is pretty even-tempered now but when he was newly diagnosed and before he started the therapies that helped him process his emotions, he would have meltdown and tantrums (and there is a difference between the two) several times a day.  Being the perfectionist that I was,  I would often add more stress on top of an already stressful situation because I would want to carry on with my day and complete my daily to-do list.  I would feel like the worst mother ever at the end of the day when nothing got accomplished. But I learned to change my perspective.  At the end of a tough day, my laundry may not have been folded, there may have still been dishes in the sink, and I may have never gotten to the store.  But Zion was calm.  And, most importantly, he had not injured himself or others during his tantrum.  The things that did not get done no longer mattered. And guess what? Now Zion washes and folds his own clothes, vaccums and sweeps the whole house, and can even make simple meals for himself. It gets better – don’t waste time worrying about the small things.

Everyone needs a cheerleader.  From the time I realized that my son was not reaching his milestones timely, I have had to advocate for him.  From going back and forth with the pediatrician about getting a referral to a specialist for Zion to be formally diagnosed to finding the perfect school for him, advocating is a full-time job.  But, everyone needs a cheerleader.  Confidence in yourself is great but having that cheerleader is what gives you that extra boost. Zion knows he is smart and capable of doing many things that others think he would not be able to do because of his diagnosis.  But me being his cheerleader gives him that extra boost because I am there – loud and proud – reminding Zion and everyone else of great he is, how smart he is, and how talented he is.  Just as cheerleaders stand on the sidelines and let the whole arena or stadium know how great their team is, everyone needs that person who encourages them.

I want to end this post by offering some words of encouragement.

Be kind to yourself.  There will be good days and bad days – count every day that you make it through as a win.  Don’t be hard too hard on yourself.

Accept help.  I often felt that nobody could care for Zion like I could – and to be honest, I still feel this way sometimes.  But I have learned to accept help from the people that my son knows and is comfortable with and that knows my son, his triggers, and how to calm him.  It took me a while but I finally got there. 

Don’t take the aggression personally – this is harder on them than on you.  Tantrums, meltdown, and aggressive behaviors are sometimes scarier for the child than it is for us as parents.  It took many therapists to convince me that Zion was acting aggressively at home and not at school because I was his “safe place” – a place where he knew he could release everything that was pent up in him. Don’t take it personally – your child knows your love is unconditional.

Advocate! Advocate! Advocate!  Resources for special needs children can sometimes be hard to find.  Ensuring that they get everything they need to reach their fullest potential can be very hard due to this lack of resources.  Advocating for your child will be the biggest “I Love You” you can give them. 

YOU GOT THIS!!!!  Being a parent of a child with autism has caused me to experience a wide range of emotions depending on the circumstances.  It has exhausted me, angered me, scared me, filled me with anxiety, and has even brought me to tears on several occasions.  But it has also made me excited as I look at Zion and the handsome pre-teen he has become, it has forced me to be creative in how I ensure he gets what he needs, and it even makes me smile when I realize that my son is a pretty cool kid.  And I know that – despite the frustrations and setbacks that he may endure – Zion will be okay.  

Celebrate your child. Let the world know how great your child is. I will start. Zion is 12 years old. He loves to watch YouTube, eat pizza, swing, put together 500 piece puzzles, and as I stated before, he even likes to do chores around the house! Zion is smart, loves to give big hugs, and loves his family. He is a great kid who smiles a lot and loves to make others smile.

Celebrate your child or tell how you spread awareness about autism in the comments below!

Special Needs Parenting: My Wish List

Before I get started, let me first tell you that this is going to be a very personal and candid post.  As you may or may not know, I am the parent of a 12-year-old who has an autism diagnosis.  As a parent of a special needs child, I experience certain frustrations that come along with having a child that has additional and specialized needs.  The following is my wish list that is based on my experiences but may be shared by other parents in the special needs community.

I Wish There Were More Recreation Options for Children with Special Needs.  I wish that I could just pick a sport, any sport that I feel my son would enjoy and just sign my son up.  My son requires a sports team that has buddies for the children that can assist them with actually playing the sport and those options are few and far between.  This sentiment could also be made for things like summer camps for special needs children that are either very expensive or have hours that are not conducive to a parent that works a full time job like myself. These camps are often either half day camps or camps that are not open every day. Not having access to recreational activities or camps restrict my son’s ability to make friends to only the people that he meets at school.  Recreation is a great way for kids to get physical activity as well as a way for kids to make friends while having fun.

I Wish Resources were More Accessible.  The best schools, therapy options, and recreation activities are in the more affluent areas.  Parents, like me, who live in more moderate-income areas have to drive quite a distance to ensure that our children receive the therapeutic, educational, and recreational opportunities that are necessary for their success.  My son is fortunate because we have a reliable vehicle and can travel to these places.  But what about the mother that can manage to keep her child fed and a roof over their head but does not have a vehicle to get to therapy or to a specialized school that is best for her child?  She wants the same opportunities for her child that the mother in the more affluent area wants for hers, but it is not as easy for her to get to it and that is not fair.

I Wish I Was Not So Worried About His Future.  Now, I already know what you are thinking – all parents have this wish.  And you are right, all parents do have this wish.  I have this wish for all four of my children, but it hits different with my 12-year-old.  I want my children to make good decisions that will lead them to have happy and productive lives.  For my 12-year-old, I work hard now to assist him with acquiring independent living skills so that he is not a burden to anyone.  My hope that if he is not perceived as a burden, he will not be mistreated.  I talk to my other children all the time about looking out for him to ensure that no one takes advantage of him or try to become his caretaker just to get access to his benefits once I die or if I become unable to advocate for him.  They all agree now but I also know the reality is that they will have their own families at some point and may not be as vigilant as I would like. This thought leads me to worry more than what is probably healthy.

Being the parent of a special needs child has required me to make modifications to ensure that my son has the same opportunities for recreation and education as his siblings.  Some barriers are reflected in this list but special needs parents are just like every other parent – we love all of our children and have no issues with walking the extra mile or fighting the extra battle to ensure that each of our children gets what they need. 

Are you the parent of a child with special needs? What would you add to this wish list?

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