Today we are finishing up the topic about the 11 Areas to Focus on After an Autism Diagnosis Part 2. I wanted to talk about this because when Remy was diagnosed with Autism, we didn’t have a manual or instructions. There was no one out there to tell us what to focus on if you want the most well-balanced child, to be happy, and have your family thrive. I didn’t have that, so I created it. And I created it based on experience. Now it has been about 5 years, and I know what has worked and what hasn’t. So this is my love note to you. I wish I knew this when I was first starting because it’s so scary and we are so overwhelmed. So go download the FREE GUIDE and I really hope this helps you!
There is going to be a lot thrown at you in the journey of raising a kid with special needs. You’re going to have doctor appointments, lists of supplements and drugs, therapies and schools, tests. It’s just A LOT of stuff. When you have a child with special needs, everything you do is way more intense. If you’re not organized, you will not survive. I am speaking to you as an unorganized person myself, and it’s not a good way to be. If you are not an organized person, now’s the time to learn. The easiest way that I have stayed organized is through Google Calendar and Google Drive.
Google Calendar is where I put every single appointment. I can’t live without it. It has Remy’s entire schedule, like ABA, who’s going to be there, every doctor’s appointment, school, anything. It has our whole life there and I use it religiously.
Google Drive is also really good. You will always have paperwork from the doctors or psychologist’s office. I take a picture of those documents and I file it into Google Drive. It’s stored on the cloud so you can access it whenever you want. I don’t have a physical file folder of stuff because I would lose it. Anytime someone asks me for paperwork, I can easily send it to whoever needs it.
I know that you are the kind of parent that wants to do everything yourself. You didn’t go into parenthood to have someone do the raising for you. You didn’t want a child so that you could hand off the responsibility to other people. You want to raise the child in the way you want and you want to do it yourself. I know you, I get you, and TOTALLY understand.
But you are going to have to let some of that go. If you want to be a success and you want to give your child the best that they can have, you are going to have to start looking at the areas that you can delegate to someone else. So, what does that look like?
Maybe have someone clean your house, cook your food, or clean your laundry. Or you could hire someone to watch the kids so you could have a date night once a week.
We have to realize that we are one person, we are dealing with a lot, and one person cannot solve all of the problems. What is THE most important thing to you? Focusing on what’s really important to you and delegating as much as you can to someone else is going to give you exactly the kind of life you want for your child.
Look for Services
This one will take a bit of detective work on your part. When Remy was diagnosed with autism, we were sent home with no rule book or guidebook or direction. The same thing happened before when she was diagnosed with epilepsy. We were just sent home. What happens when you are given no direction is you don’t know the things out there available for you and your family. You don’t know because no one is going to tell you. You are going to have to go out and find what’s available.
With Remy’s diagnosis, insurance covered ABA therapy. But you have to seek them out. They are not going to call you first. A good thing to do is call your insurance company and ask what is available to you. Look up playgroups, special needs days at the library, search at all the locations near where you live.
You have to look at what’s around you. You are always going to need this skill as you raise a child with special needs. Find support. Find the services around you. The more support, the better.
Become an Advocate
You are your child’s advocate. But what does that mean? No one is going to look after your kid like you will. And no one is going to speak up for your kid as you will. This is a lesson I learned early on. When you step back and let others make decisions for your child, they won’t always make the right decisions. You have to be in the driver’s seat and speak up for your child.
I talk about two different instances where Remy was in the hospital and I had to learn that I needed to be her voice. Sometimes, I had to make sure that everyone was doing things that were in her best interest, even if they disagreed.
Speak up when you see something not being done right. Being an advocate is SO important. If you are shy and you don’t speak up, it’s time to change that. You have a child that is here to teach you that lesson. Your voice is important because your child needs your voice.
Slow Down and Enjoy Your Child
We get so caught up in trying to fix a broken situation and we try so hard to get the therapies, appointments, the right diet, the right books, and spend time working with our kids, and teaching them how to communicate, and learn social skills. We spend so much of our energy on giving them the tools that they need, that we can lose years of just enjoying our child.
Enjoy these moments and appreciate how cute they are instead of focusing on all the areas they need help on. All the moments that you look back on, you’ll realize you missed because your mind was on something else. And that is the biggest tragedy.
- Get Organized: There will be so much to keep track of that you will not survive if you do not have a plan. We use Google Calendar with all of our schedules for each person in the household, and we use Google Drive to save all of the important paperwork that we need.
- Delegate: When it comes to raising a child with autism, it takes a lot more focus, attention, patience, and a lot more of you. If you are being pulled in a million directions, you aren’t giving your child what they need. And I know you realize they need extra, so now is the time to start letting go of the idea that you need to do everything. If you are doing everything, which area is getting your total focus?
- Look for Services: We aren’t given any information or guidebook after a diagnosis. No one offers information about what resources you need to get for your child or how to get them. You need to do this yourself. It is so important that you research and seek out to find what your child needs.
- Become an Advocate: You are the best person to advocate for your child. We watch our children, spend time with them, and we know if a drug or therapy is not working. We have to be their voice. We cannot wait for someone else to come over, spend five minutes with our kid, and say exactly what they need. That will never happen. Your child needs your voice to speak up for them. No one else will if you don’t.
- Slow Down and Enjoy Your Child: It’s something I work really hard on with Remy. It takes practice. I know I will look back and miss those moments with her at 6. I don’t want to look back and see that I missed moments because I was consumed with fixing her. Enjoy your child. Enjoy their differences and enjoy their silliness. Enjoy being a mom. If you don’t enjoy your child, you will miss it, and your child will miss the best version of you.