Month: May 2016

When you realize your child has a delay/deficit, you will learn very quickly how many people are in your corner. Of course most of us will have our friends and family to help us out physically and emotionally; but there is also a million other people who will come in and make an impact on your child.

1. Doctors- your child’s pediatrician can open many doors for you in terms of healthcare and therapies. Having a doctor you can trust and who can really listen to your concerns is one of the best relationships you can have for your child. My son’s developmental pediatrician is amazing; I never feel rushed and he listens to every question I have. He goes above and beyond for my son, getting us every therapy and every opportunity Eli deserves.

2. Therapy/School recruiters- Once your child gets referrals for therapy or school based services you first talk to a recruiter/office staff to set up evaluations and meetings. Being nice to these people may mean more opportunities for your child. But always remember to be persistent! These people are extremely busy, especially in my location, and sometimes they need an extra nudge or phone call to get the ball rolling. We were on a time crunch to get an IEP done before we moved to California. Our team in Michigan got the whole thing done in about 30 days start to finish. It was amazing, everyone really understood how quickly we needed it done and stepped up for us. After we moved to California I reached out to the school district for a new IEP and I spoke with the Speech director for the special education program and she asked me to meet her the very next day! Reaching out to anyone and everyone you can is how your child will get all these services.

3. Therapists- In my personal opinion, the therapists are the main relationship you need keep healthy, because they are in a child’s life more than some working parents are. My son currently gets 21 hours of therapy a week from 4 different therapists (we haven’t even started OT yet!) and I LOVE all of his therapists and they all LOVE Eli. You need to like and TRUST these people. If you don’t like a therapists or your child just doesn’t mesh well with them SPEAK UP!! There are no hard feelings; the therapists will just move on to another patient and you can get someone who works for your family. When my son was a year and a half we started speech back home in Michigan. This was before the diagnosis and our first time ever doing any type of therapy. Lisa came into our home and made us part of her family. She cared about Eli and she listened to every one of my questions, concerns, and stories. Even though we have moved across the country she still likes to hear updates on him, amazing!

Everyone in Eli’s life is teaching him something. We have a lot of people in our corner helping and guiding us through this process. Some are even just here to cheer him on. The bigger the support group, the brighter my son becomes.

Children on the spectrum are a handful. From screaming all day, to tantrums, to sensory overloads, to not listening to a damn thing I’ve said all day. The person who stares at you in the store during one of your child’s meltdown is already annoyed of the screaming. Little do they know, its not a discipline issue, my child isn’t spoiled, my child is autistic and this is the 6th meltdown of the day. Especially during therapy, my child is a time bomb that gets detonated by the smallest of things. The simple phrase, “Let’s pick up the toys before we play with the iPad” will send him running and screaming.

To be a parent of a child like mine, you’d think I would be able to block these tantrums out; and for the most part I can. But there are definitely days were I’m ready to run down the street screaming. When my husband gets home from work I collapse on the couch under a blanket and hope Eli doesn’t find me. Sometimes you just have those days where you can’t skip over the tantrums, where you hear EVERY. SINGLE. ONE. Today is one of those days. I usually just end my night with two or three glasses of wine and the tension melts away, unfortunately for me I’m on a diet and have no wine in the house. So I will just keep it in until bed then sleep it away.

One thing to always remember is TOMORROW IS A NEW DAY. Wake up feeling refreshed, forget about the bad day you just had, and look at today with a positive attitude. Yes, my child is a lot of work, but I wouldn’t trade him for any other child. Because behind those screams and tantrum is a boy with so much joy and laughter its infectious. He is the sweetest boy I’ve ever met. I just need to remember that when he’s driving me crazy.

Let me start off by saying, I am no autism expert; I don’t have education in autism, I don’t know everything. What I am is a mother raising a son recently diagnosed with Autism Spectrum Disorder. So far on my journey I have learned A TON and I am here to share and help other parents, siblings, grandparents, or ANYONE with or a relationship with ASD.

My son Eli was officially diagnosed December 2015, although we had been seeking help since September 2014. My first red flag was when my son was one-year-old and not saying any words. Any new mother finds herself secretly comparing their kid to other children. “What the hell, Stacey’s son is already walking? Honey! Get the camera, we’re going to make Ben walk today!” I said and did the same things when my friends were posting videos of their kids saying their first words on Facebook while my son was stuck baby babbling. My family and friends kept telling me “just wait, Eli will get there. Every child is different” or my personal favorite, “Boys develop later than girls”. Both of these are true, well at least the first one (do boys really take longer to do things than girls or is this an urban myth?). But I stayed positive, it will come. After months went by and Eli still wasn’t talking I sought out help.

When Eli was 18 months we were in Michigan during my husband’s first deployment. My mom helped me find Early On, a state program offering services for children 0-3. I believe all/most states have programs like this that is considered a school readiness program; the best part- it was completely free. They respond to your application and have to come out within so many days to do an evaluation, if they find your child with any type of delay you get approved for services. Eli was found with a speech delay so we began speech therapy within the month. Everything was home based, we never had to travel for services. Eli remained in speech until my husband got back from deployment and we moved to Arizona. We started up the Arizona equivalent to Michigan’s Early On with AZEIP (Arizona Early Intervention Program). This was about the same process, everything is home based and they even saw Eli once a week in daycare and at home so they can work with him in different environments. I suggest taking this route first. Autism is diagnosed once children are a little older, but if you notice any type of developmental delay around a year old, look into these programs. They’re AWESOME!!!

Because we are military, I realize we have more opportunities that others might, so this next part may not be an option for everyone, but here is my experience. We brought Eli in for a basic doctor check-up and I voiced my concerns about his speech delay despite a year with speech therapy. She gave me a referral to see a developmental pediatrician. At this appointment Eli was a little over 2 ½. Within a half hour or so, the doctor hit me with something I never saw coming, the Autism Spectrum Disorder diagnosis. I fought back tears as I tried to listen to him, but after he said that, from then on out I only heard Charlie Brown’s teacher. Hearing that your child has a disability is heartbreaking. You heart breaks for your child, then a million questions run through your head, “What does this mean?” “How do we fix this?” “Is he going to be different his whole life?” “Will he be able to make friends?” “Is it something I did?” My husband was away when we had this appointment so I sat in the office by myself with all my feels swirling around.

My son is very low on the spectrum. He is high functioning but he also has extreme communication delays and fine motor delays as well. However, that doesn’t help hearing that diagnosis. Everything is very overwhelming. Your emotions are perfectly normal and its ok to take the time to absorb everything and be sad for your child. But as soon as you can, kick them all away and get into power mode. Find support groups, Facebook is a great place to start. Support groups are a great place to ask questions, get advice, and best of all to make friends. Next, find as much reading material as you can. There are a million books out there that give great insight on ASD and also personal help. Lastly, Google is a great place to find a lot of resource websites, ideas, groups, and even blogs like mine!

An Autism is not the end; it is the beginning.