The Story Of Three: Currently On My Heart - Newly Diagnosed

Tuesday, January 27, 2015

Currently On My Heart - Newly Diagnosed


This post is long over due, by many years, however I've learned many things along the way that will hopefully help one parent or mom to the next. I am in no way shape or form experienced in the Autism or Special Needs area, however, I am raising my son with Autism & while everyone's journey is different, I am here to help, here to offer tips & advice & here to listen. I was not handed a pamphlet or offered a class (even though I'm not sure it would help) after my son's initial diagnosis. I was given paperwork & we left, that was it, I was on my own, or so I thought. 

I remember sitting in the car a few days later, my Mom was driving, looked over at me & said, so how do you feel about "C" having Autism. I kind of shrugged it off, I wasn't sure, in my head I thought I got this, it will be alright, he was so young, I REALLY didn't know what Autism was or what path God was about to lead me down on. 

So if your newly diagnosed or the pediatrician has the term Autism or Special Needs swimming around in your head, here's a few tips or pieces of advice!

1. Contact your state services, show proof of diagnosis, get on the list(s) & start receiving therapy.
  • Shortly after our visit to the Child Study Center for the official Autism diagnosis, I contacted ECI, Early Childhood Intervention, which is a popular program here in Texas. For a few months therapists came out to visit my son at his daycare at the time, he received OT, PT & Speech - which was all so new to me, I had never sat in on a therapy visit, ever.
  • ECI are the one's who introduced us to the special ed program at our local public school. Yes my son was only 3 years old at the time, but the school offered a special ed program that was half day, five days a week. There he would have an IEP (individualized education program ) as well as receive therapy, other services, etc. 
  • We are also on a few long waiting lists through MHMR, more can be found about that HERE.
  • Also if you have private insurance they will provide some therapy depending on the company, what type you have, etc, however at the time my son qualified for Medicaid & we didn't have private insurance so this is who paid for his services. Once ECI was done (they serve up until the age of 3), we received therapy for several years at home after school through Sante & Therapy 2000. We've changed companies over the years, therapists are in high demand & those too have changed but my case workers are very helpful & nice when it comes to helping your child or helping you with insurance questions, etc. 
2. Become friends with parents of other special needs children.
  • When my son started school I was so overwhelmed, therapy, ARD meetings, there was just so much to take in. I slowly started making friends with other moms & parents in my sons class, we all had something in common, I quickly connected with one mom in particular & it was great to have someone to attend field trips with, chat & socialize with that understood & knew my day to day life because she was walking it as well. To this day I still chat with that same parent, we like to go out to dinner occasionally as well & even though our children don't attend the same school anymore, we always have plenty to talk about when it comes to our kids!
  • Even though my son is older, I'm still meeting new parents & making friends with other parents of special needs children. A new family just started attending where my daughter takes gymnastics & when the Mom sat down next to me we started chatting & hit it off, I thought I had seen her son & after speaking with her, found out he is Autistic & we had a great conversation! 
  • I like to tell my Mom I feel like I have this "glow" about me when it comes to Special Needs, over the years I've run into a lot of strangers, parents & therapists, I feel like God brought us together for a reason, we are all connected somehow in the "Autism & Special Needs Community". Recently I acquired a new customer & turns out, she is a therapist for one of the companies that my son gets services through, small world huh?

3. You are not alone & should not feel that way, we are all on the same journey.
  • It's overwhelming, physical & emotional draining sometimes to be a parent of a special needs child, especially if your a single parent like I am. However, you are not alone, I learned very quickly to lean on my family members closest to me & my best friends. I honestly don't think I could survive with out them, they are my rock, my support, my shoulder when I need to cry, an ear when I need to vent, they are here for me, here for my son & my family. 
  • The next set of people that will walk through this life with you are your children's therapists & teachers, these amazing men & women quickly became another set of close people. They spend countless days, hours & minutes with my son, giving him direction, therapy, love, positive reinforcement, they are also there with open arms & hearts to help, support & over the years we've had some amazing ones that we truly loved!
4. Get involved in your community & Church.
  • This is a big one for me, it took years for me to start attending Special Needs events, Autism Walks & going to a Church that had a heart for Special Needs. I have no idea why it took me so long, but it did & today I've done three Autism Walks, I've registered for a fourth & I've been attending a wonderful Church for over 4 years. It is the perfect place for us & families with Special Needs children, they take care of my son every Sunday morning while I attend what my daughter calls "Big Church". They offer a once a month parents night out, specifically for parents of Special Needs children, run by a great group of volunteers, because they get it, they know we need breaks or a night out.
  • I also joined a few Facebook groups where I can chat with parents local or far away, post questions, get advice, reach out when needed, etc. Sometimes it's nice to just have an outside input or answer.
5. Enjoy your life.
  • Yes, even as a parent of a Special Needs child, it's still important to enjoy your life. Don't get lost in the hustle & bustle of therapy visits, doctor appointments & school, you still have to take care of yourself & your children & you should be happy doing it. As a single parent I carry a lot of weight on my shoulders, but we stay organized & for the most part things run smoothly on a day to day basis. I run off of a large calendar on the fridge & my faithful sidekick Siri, we still attend birthday parties with our friends, go out to eat occasionally & this year for the first time ever we are going on a family cruise. 

Along this amazing journey you will run into challenges, long nights, maybe even temper-tantrums & this journey is not for everyone, not everyone will understand or get it but trust me when I say so many DO. After all we have been through, we still have a long & winding road ahead of us, but I continue to stay positive, be encouraged & most of all feel blessed. One of my favorite quotes is "God gave you this life because you are STRONG enough to live it".




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3 comments:

Megan Sutliff said...

This is so great Jess, a lot of helpful information that I'm sure will help many parents! I love that last quote ;)

Amber Ludwig said...

I can only imagine how overwhelmed so many parents feel finding out an autism diagnosis!! Your list is so great to cope and handle it! Thank you for being an inspiration :)

Ronald Gagnon said...

I had a cousin who was born with autism and her parents loved her special, util she died at 17...she was a very loving person