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I remember when we got our first diagnosis of autism. We were basically thrust into this world that we knew nothing about. We barely knew how to engage our own child, let alone how to connect to the outside world. Now what? That question just hung over our heads after that diagnosis. So he has autism, now what? We now had this label, so what are we supposed to be doing with it? Where do we go from here? It’s like having to put one of those really loud and obnoxious Christmas toys together without having the manual. You have the name of what it is, but other than that you are clueless.
So, now what?
Well, now it’s time to hit the ground running. You are now entering foreign territory, get to know this new world. Reach out to the community, and start building you and your child a support group. Ask about specific advocates within the community. Trust me, you NEED the support. You are getting on one jarring roller coaster, and it’s hard to stay on sometimes. You will start seeing slow, snail moving ups, only followed by fast and fearful downs. Having that support around you and your child, will help you both to stay seated during the ride.
The best place to start looking for community resources, is at the office of the doctor who diagnosed them. Go look at that bulletin board that just looked like a cluttered decoration to you at first. Hidden on that bulletin board could be your golden ticket. You’ll find support group names, and numbers. Offers of play groups from other lonely moms. Take all the cards and sort through them later. Another great place to look for community resources are the school districts. Take a ride to the school department, and talk to th special- ed department and see if they know of any in the community. If you are having no luck finding any support in your community (it happens, unfortunately), then turn towards Facebook, Instagram, Pinterest, and Google+. All of these social media platforms are great ways to meet other people just like you, and that’s true for the autism community as well. Yes, it really is a community. Go fishing for autism Facebook communities, and once you are in those groups, ask around. Ask if anyone lives near a city close to you. Talk to them, reach out to them. Coming from personal experience, it’s hard making mom friends when you have a unique child, not every one takes the time to understand. These online autism support groups are great ways for not only you, but also for your kiddo to find someone just like them to play with and grow with. They are also a great, and I mean great resource place. Here are some autism communities that I belong to.
So, now you have your label and all the paperwork that comes with it. You have the community support, or virtual support.
Now, it’s time to dive right into the right therapies and the help your child will need. Now it’s time to learn how to become a better parent for your child. If you looked into any of those groups above, you would have seen everyone talking about OT, BT, ABA, PT, Play Therapy, Speech, IEP, 504, and more. Don’t be scared, I know it looks like I just had a seizure and typed a bunch of letters and numbers, but I didn’t. Those are all therapies that are extremely helpful for children who are on the spectrum. The one thing that you will learn about the spectrum, is that it very large, and no two children on the spectrum are exactly the same. For instance, I have two on the spectrum, and only one gets speech. The specific therapy that your child will need will be addressed at a follow up appointment with the Doctor that diagnosed them. However, it’s a good idea to research the various therapies, to help you make a more informed decision. The ones that I have seen the most progress with, and that I personally advocate for are:
- OT (Occupational Therapay/Sensory OT)
- Play Therapy
- IEP/504 plan for schools
I know it seems like a lot, and you’re right it is. It is information overload, emotional overload, just an everything overload. You will take one step forward, and then ten steps back. It is a constant battle, and everyday is a new day with a new struggle or triumph. A great way to just let it all go, is to take even five minutes out of your day, to just meditate, write down the triumphs and struggles from the day, and let them go.
Now, you have the label, the support groups, and therapies lined up.
Well, now it’s time to start a new routine. It’s time to put all that knowledge and resources and find a rhythm that fits your family best. I highly recommend getting a planner, a white board, synchronized phones, whatever you have to do, to keep the whole family on top of it all. You have to find away to incorporate other activities besides autism and therapy. Workouts, play dates etc, are great ways to help not get lost. Once you have a schedule that works for you and your family, STICK TO IT!!!! Children on the spectrum strive from consistency and routine. When their routine is altered, chaos can happen, and that’s the nice way of putting it. Make sure they know what the schedule is. Having a visual representation of their schedule is a great way for them to be included as well.
Embrace it all! Learn to celebrate those little milestones and to accept those steps back. Learn to enter your child’s world, and celebrate with them. Learn what they like, encourage them to learn more. Help them learn about the world around them. Accept that you are an autism family now, and you are all in it together. You are NOT alone, and whatever comes your way, you will be able to conquer it together!!
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