I never knew what parenthood would look like for myself. Infertility made sure of that. I always thought once a baby gets in my arms everything will be perfect. Ha. Life has challenged my family in many ways. There is always something we are trying to survive through. Luckily, we survive very well in chaos.
Jack was diagnosed in February with Autism Spectrum Disorder. While we are thankful for answers, we have a long journey ahead.
It takes a village to raise a child, it is no understatement. I just wish it were free. When a special needs child gets thrown into the mix it, takes a lot more help.
It takes a husband to hold his wife together as the overwhelming waves of emotion crash on her. It takes a Speech and Occupational therapist to help guide the gut instincts. Often it takes a psychologist, special education teachers, children’s directors at your church, a pediatrician, family members, friends, neighbors and the kindness of strangers not shooting out judgement at every public meltdown.
If you are part of the village of a special needs family, then you know or you are about to know exactly what that means. Being there is number one. Whether it is to take a simple picture to show your support or a much bigger request. For the parents and for the child, support changes everything. That might be a weekly check in, that might be dragging parents out for a kid free break, volunteering for playdates out and about for the tiny humans with their parents etc. Or in my family’s case, answering a facetime call from Jack. It is more than likely at that moment he is having a really hard time and the only thing to make him feel better is talking to someone. I know that helps me too.
Research and asking questions are huge. It is okay to ask questions. I rather educate someone than have them assume (in most cases it is not accurate information when assumptions are made) I am learning this too, and by no means a professional, yet.
What happens when you do not have a village? I know some moms/families that do not live near help or financially cannot afford the therapies, medical bills and even babysitters. Here is where social media can help someone. Reach out. There are sooooo many families going through the same thing, you just have to look. I am completely new in this world and have already made connections whether it is people that have jobs to help Jack or other moms that have autistic kids. The biggest advice so far, that is always helpful to any situation I have been in, is find your village.
Online, in person, these days it is all at our fingertips. I know it is hard and scary and way way way overwhelming. I do not have all the answers. But I am here for anyone going through this special needs world. It is hard being alone in this. It is hard feeling alone in this. I am 100% guilty of trying to take on these challenges alone. I have also reached out and often people do not make themselves available to give me that support, distraction or venting session. It sucks and makes it worse feeling that loneliness, but I am here for you.
I have received a lot of questions when we went public with Jack’s ASD, here are a few common ones!
What were some signs Jack showed?
– I was obsessed with my first born and had a big fear of being THAT parent calls the doctor and over analyzing things. I later regret not listening to my instincts more. At 2 years old we noticed Jack’s self-regulation shifted. He displayed anger, aggression, his meltdowns and emotions could last for days, covering ears, picky with foods (which he wasn’t when he was a baby) specifically Yellow/White carb/starch Foods outside of candy category, obsession with lights (flickering/switching on off), lining toys, if the toys are shifted it would lead to outburst, clumsy, easily frustrated, speech delay, unpredictable and meltdowns when schedules aren’t consistent.
When did you discover something was off?
– At 2 years, his delay in Speech was our biggest sign. He was not getting any intervention until age 3, when his doctor finally believed me that something was off.
How many words did Jack have at the beginning of therapies? and how many now?
Jack had about 8 words… He now is imitating so many words, if I had to guess he probably have 30-50 but uses 2 word combos and uses 15 words daily (Thank you, more, milk, Hi, how are you, bye bye, night night mama, Sissy Come!, Baby, etc)
What happens next when you talked to his pediatrician?
– Jack was recommended for evaluations, the state evals were 6 months waitlisted, so he attended a district evaluation, he was sent home early for “obvious failure” after that the pediatrician needed to rule out a hearing test. Jack had to do a ABR/hearing test while sedated. After that, he got evaluated for OT/Speech through a private clinic we pursued. Then the district eval again and he qualified for an Early Childhood Development preschool that works hands on with his IEP (Individual Education Program).
How does Jack’s new playroom help him?
– We added a rock wall, monkey bars, climbing net, hanging pods and a swing saucer to the playroom shortly after Jack’s diagnosis. He needed a space that was safe for him to put his energy in without hurting himself or climbing things that are off limits. When Jack is over stimulated, he will hold onto that for hours or even days… now when he has a rough day and cannot stop crying or being aggressive, we sit on the swing and just rock him. It eases his frustrations but gives him enough motion to not go stir crazy. He has enough control of the swing to enjoy while still getting sensory input. The pods are meant for him to have isolation when he is not wanting to be around others, currently his new kick is spinning around in the pod. Jack also likes the monkey bars; he makes it to the top to crash into the bags and mats. We did add 4 more mats to the playroom for inevitable injury protection.
What’s ABA Therapy?
– It is a specific therapy that can happen in clinic or at home for autistic children to learn how to self-regulate, handle changes and transitions, basic needs like potty training, socializing & self-care etc..
What’s your biggest fear with Autism?
– That life will be harder for my child.
– That the world will be cruel to him.
– My child feeling unloved or like he does not belong. Being left out or lonely.
What is something I can do to help?
– Ask Questions
– Make an effort to be part of Jack’s life
– Help us feel supported
– Bring Awareness to Autism
– Help others know they aren’t alone
Autism is the latest challenge in our life, but like all challenges before this, we will change the world using our circumstances for the better. I pray we can just help one person throughout our journey.
What’s it like having to deal with special needs everyday?
HARD. Good days and rough days. Somedays it can really get to you. Just that complete worn out exhausted blah. It is nothing anyone can prepare for, you’re just trying to do the best you can and keep the tiny humans alive. Some days I crush it, on time for therapies and preschool, other days I am crying in a corner while two kids are losing their minds. This is where the friendly support of others is needed..
What’s next for Jack Jack?
-He is on a waitlist for an evaluations from the ABA clinic that we are pursuing for Jackson. They will observe and determine how many hours a week he will need. Once approved, we wait for a therapist to be available to work with Jack. There is a lot of waiting in this Autism world..
After loads of paperwork, insurance nightmares of no coverage and unhelpful customer service we found that Jack’s therapy was not covered (without diagnosis) … They left out that little bit of information… would have been nice to know that is how we could obtain services/ coverage with the diagnosis… instead of me having an insane panic attack and endless tears… without insurance his therapy would cost $1000-1400 a week!!!!…. So now, we wait…
Also waiting on DDD acceptance to help with the some of the costs of an autistic child.
Praying he gets matched with an ABA therapist before he gets out for summer break. When school was out for two weeks for spring break, it really messed with Jack’s schedule. The smallest shift can really make life hard for the little guy.
Jackson is attending an early developmental preschool during the school year along with one on one occupational and speech therapy. It has done wonders so far! Good days and really hard days, but he is learning social skills and getting time with a speech/ot therapist and special education mentors.
Autism is different for every single person and their family. One kid might be this version of autistic while another is different, there is no exact journey. When special needs comes up it is often a “downer”… we forget to look at the positive sides of a challenging situation.. Some things Jack does are completely magical! My favorite quality he has is affection! Boy loves his hugs and kisses. That is so rare in this community. He also LOVES saying hi and thank you to strangers, protecting his sister from the “Daddy Monster” and playing with other kids, although he struggles with lack of verbal ability and understanding some of the rules in the games, he craves playing with others. He is a sweet, fun, curious little boy.
1 in 54 children are on the Autism Spectrum. Boys are 4 times more likely to have ASD. 40% of autistic people are nonverbal. Most families will spend $60,000 a year for their autistic child & services. For more statistics click on link…
The only “cure” to Autism is kindness. Spread it everywhere.
There is nothing in this world that will make me stop loving this boy. He is just an incredible miracle, from day one. I am always so proud. Progress over perfection. But he is pretty perfect in my biased opinion. I want to thank everyone who took the time to spread love and support to us. You have no idea how much a simple how are you or you’re doing amazing comment can change my day. Life is challenging.
I never expected to be on this autistic adventure, but my tour guide is pretty AU-SOME.
Jack is going to change the world; I am pretty sure he already knows that. Be part of his village and you will see every mountain that he will conquer.