Autism,  Family,  mommyblog

Your Child Has Autism…..Now What?

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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.

https://www.facebook.com/groups/967191276732189/

https://www.instagram.com/explore/tags/autismmom/

https://plus.google.com/communities/113482827049030604262?iem=1

https://www.pinterest.com/

So, now you have your label and all the paperwork that comes with it. You have the community support, or virtual support.

Now what?

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:

  • ABA
  • OT (Occupational Therapay/Sensory OT)
  • Play Therapy
  • Speech
  • 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.

Now what?

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.

Now what?

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!!

 

Great Autism Buys

34 Comments

  • Nicole

    Kudos to you for being so strong and matter of fact about all of this. While I’m not an autism mom, I do have a child with social needs and I know how important it is to feel “not alone”… Sometimes you feel like you’re drowning and you just need someone to say “I get it”. Finding a community can make all the difference in the world!

  • Kansas Bonanno

    We are currently having my four year old tested to see if she is on the spectrum or has some other issue going on. It’s exhausting to be sure.

  • Angelle

    I commend you on how dedicated you are to educate yourself, your family and friends, and society. I love the statement your family is all in this together. You are certainly never alone and neither is your beautiful little ones.

  • Sarah

    Love how well you’ve written this! You put it all out there, but delicately. I’m constantly amazed by how taboo ASD is, but you’ve really hit the nail on the head. Great post!

  • Preet

    You are so strong, person. You are truly an inspiration facing all this situation. You have such a wonderful family.

  • Geraline Batarra

    This is such a nice post and I am so glad that you are able to tackle this matter. As a mother I am so proud of you for being a strong person and thanks for sharing this awareness to all of us.

  • Holly

    What a great and educational post. It’s so important to teach people about these things and help them understand their options. One of my best friends is in school for ABA, and I love learning more about what she does and how she helps kids…she’s taught me so much!

  • GiGi Eats

    My husband has high functioning autism, and we make it work. Since he is high functioning, he is an OPEN BOOK which helps me better understand him. I am an open book too, which better helps him understand ME too, we work together well 🙂

  • Elizabeth O

    This is such a helpful blog post. I think there definitely isn’t enough awareness out there about what parents go through after an ASD diagnosis.

  • Cindy Ingalls

    I remember when we first realized my nephew was on the spectrum. It was overwhelming, but with therapy and patience, he is doing so well. He is very high functioning but does have social issues., and just completed first grade. He never fails to surprise me with his intelligence and ability to understand things most adults don’t.

  • Ann Snook

    You seem like an awesome momma! I think making a schedule can help keep families of all sorts sane, not just those with kiddos on the spectrum.

  • Aseky Bonnaire

    This is wonderful for parents’ who just found out their child has autism. Amazing resource! I have a few friends who shared with me that they felt alone and didn’t know “what’s next”. I’m sure if they read this back when their sons’ were diagnosed they wouldn’t feel so lost!

  • Asma

    This was so heartfelt. I am not a autistic mom but my daughter has some other special needs. And when we found out her diagnosis i was so so depressed. I felt my world had crashed. But with time i joined a wonderful online community. It helped me so much!

  • Mommy Dearest

    Once again BabyGirl you kept it “REAL” about family life with Autism. You also gave Hope. As your mother I know your daily frustrations, I feel them with and for you. What you don’t see are the tears in my eyes as I read the comments from this Blog. MY heart is full of pride to have you as a daughter. You are helping SO many people live and cope with the autism life. My perfect grandchildren are very lucky to have you..as I am also, Love you morest!

  • Jojo Hua

    I have a very young cousin who has autism and I actually didn’t have any idea about what autism was before that. Since then, I discovered that I have quite a few friends who are autistic but you would never be able to tell if they didn’t tell you. I’ve learned a lot about autism since.

  • Ashley

    Great read. I have not dealt with autism personally, but I know many who have. Ithank you for sharing! Even those of us that don’t have this in our lives, it’s good for us to learn more and to be able to understand better.

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