Happy National Autism Awareness Month

World Autism Awareness Day 2018 was April 2nd, however April is still National Awareness Month. It is my hope that I can help spread awareness by sharing my experience with my son – my second oldest, whom was diagnosed with Autism in 2016 at the age of 6. I will attempt here and try to give you some tools that will help you or someone you know, learn the possible signs of Autism. Please keep in mind like everything, everyone’s journey is different.

National Autism Awareness Month - April

There is no doubt that each child begins to do things at a different time, starts to hit milestones at a different pace. But know that pediatricians do want some milestones to be met, otherwise it may be a sign that the child needs further evaluation to know if there’s an underlying issue. You can visit  Autism Speaks to know what specific signs to look for in babies and toddlers or any age, to be able to go from concern to action. I’ve had the privilege to still be seeing the same pediatrician – it’s been almost 11 years. He helped me see that my son at 14 months old wasn’t properly developing and immediately sent me to the right specialists. Maybe it’s because of my own health but I am a firm believer that it is best to know and act, then not to act at all.

2017-08-11 13.44.00
Meeting Buzz in Disney World – 2017

My son’s journey began when he was 14 months old, when aside from being developmentally delayed, he was diagnosed with speech delay because he wasn’t babbling, pointing, no gestures, among other things. So, by the 20 month mark he was placed with a phenomenal speech and occupational therapist that would come to our home to give him therapy. He was released from at-home therapy at 3 years old to attend a school that offered inclusion classrooms. At this time we also began an IEP for him. What is an inclusion classroom? Well, this is a classroom that allows a child with a disability or special education to learn with other children that are non-disabled. This has been beneficial for my son, at home he has his siblings but at school he also gets to see things he has not yet mastered in other kids, so he may get motivated or curious and attempt to imitate. Whether that is in PE, like jumping rope, etc. What is an IEP? An IEP (Individualized Education Program) is a program developed by the public school system for each child that needs special education. This IEP is put together by a team at the school and the meeting includes us – the parents, and it’s reviewed at the beginning and towards the end of each school year. We’ve also been fortunate enough to live near a school that offers these programs that can accommodate children like my son that need speech and/or occupational therapy. The therapy is done in the school and during school hours. These programs have been removed in schools that once offered them, due to budgeting. If parents can’t find a school near them, they are then directed to take the child outside for private therapy.

So, let’s fast forward to today, he is now in the 2nd grade, is almost 8 years old and continues to have an IEP in school.  Although my son was released last year from occupational therapy, he continues to be in speech therapy. I can’t tell you that anything drastically changed in our home with him since his diagnosis in 2016, aside from finally getting answers to behaviors he was demonstrating. The sense of relief was overwhelming, it’s not something any parent wants to hear, but it’s a reminder for me to continue to see that this particular son of mine, just needs a little extra love and patience. That’s all. His diagnosis was ‘mild Autism.’ What is ‘mild Autism’? While we were told he has ‘mild Autism’ by his neurologist, there is no official ‘mild Autism’ diagnosis, doctors will still categorize ‘mild Autism’ as Autism because it all falls under one umbrella. So, as to not confuse anyone, we don’t call it ‘mild.’ It’s extremely difficult to describe this ‘mild’ thing because he is academically doing great, the extra help he receives in the classroom is helping him a lot. However, symptoms will be seen, for instance loud sounds will make him scream and he falls apart. Our continued love for Disney World as a vacation destination for our family has helped him, he’s familiar with the park and he’s become aware of what’s going to happen next. He’s done great there. If you have a child with noise sensitivity say, they’re scared of fireworks or loud noise in general try these children’s earmuff’s/headphones. He has no ability to sense another persons body language, emotions or when another child is being mean to him. He shows repetitive behavior such has rocking, flaps his hands and jumps when he gets excited or nervous, also may even hit or push when he laughs. Also, when he has an interest in something, it’s intense. I’m going to be honest, the environment makes all the difference in his behavior, so his behavior and actions vary. He’s at times sensitive to the touch, at times not wanting to be touched at all, doesn’t like to eat certain textured foods, mushy foods like the tomato, avocado, etc., which many can confuse as him being picky. He can not watch a couple of movies, like ET and Willy Wonka because he will start to scream and cry uncontrollably. His teachers have a list of these to prevent them from showing these in his presence. He likes routine, doesn’t like certain types of clothing materials, has trouble climbing or going up and down stairs or even at times walking too much –  hence the only ‘C’ grade he has is in PE, this can appear as if he were clumsy.  This may give you clearer answers to sensory questions for children with Autism and any developmental disabilities. Aside from all this that many may think is ‘bad’, remember these children don’t know that any of this can be considered out of the norm. They are happy children and so smart. My son is incredibly caring, compassionate, loves hugs from Mom and Dad, loves his siblings, all things Lego and Minecraft and has an interest in numbers. I’ve said this before, this is one of those unseen disabilities because on the outside he looks like any other 8 year old boy. So, when a symptom arises anyone whom doesn’t know his diagnosis can easily mistaken him for behaving badly.  So, it’s not only about Autism Awareness, it’s also about Autism Acceptance, acceptance to all children and adults with any kind of disability.

Also, before I go, let me tell you about two amazing groups and/or organization that I have found to be making a world of difference in the Autism community. I do not have Facebook – I know, but if you do or don’t, either way, go and see what Autism Barbers Assemble, ‘Jim the Trim’ and a group of great barbers are doing in the UK. Their main focus is to cut Autistic children’s hair. They are changing the way we treat kids with Autism while changing lives. So, if you’re asking, what’s the big deal, it’s just a hair cut? No! Autistic kids have a hard time getting a hair cut because they think getting a hair cut hurts. If you can, take some time out of your busy day and watch on their Facebook page, ‘Jim the Trim’ cutting an Autistic child’s hair – holy moly, this man is nothing short of amazing! Lastly, Elmo has a new friend on Sesame Street and her name is Julia. She is a sweet, four year old girl with Autism. If you haven’t seen her debut that aired on April 10, 2017, meet Julia here. This first episode was wonderful and in my opinion I think they accurately captured the behavior and essence of a child with Autism.

Happy Autism Awareness Month, if I’ve opened your eyes even just a tad bit on this topic, then I’ve done my job. I’m in no way a doctor, and my opinions all come from my experiences in living with my son – that I would not change for the world.

And ‘D’ if you read this one day in the years to come, when you’re grown and I’m gray, know that God created you perfect in every way. I appreciate everything about you and I am honored to be your mami, I love you Gordo.

Happy Friday!

A-

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Mom Life With Chiari

Living with Chiari 1 Malformation and Syringomyelia since 2013.

46 thoughts on “Happy National Autism Awareness Month”

    1. I agree! These children, and adults, are underestimated.
      My son loves building with Legos. This year he asked to join a club at school called, Bricks for Kidz, it’s a Lego building club, and although I was hesitant at first, he loves it! The instructor said he’s more advanced than the class she’s teaching, but the next level is given outside of the school. That he qualifies to compete against other schools. Do I want him to progress? Of course! Am I hesitant again? Of course! You never know what may trigger an out burst or a change in behavior.
      He’s also great with numbers, at home. I don’t know if it’s the nerves that get the best of him, but at home he’s sharp and so quick to solve numbers. It maybe the nerves.
      When you can, check out what Autism Barber Assemble are doing for kids with Autism – it’s amazing!

      Liked by 1 person

      1. *sheltered life, I spent the largest part of my life knowing very little about myself. I’m still trying to figure me out…

        Liked by 1 person

      2. Yes, most definitely. It’s also great that we’re able to afford the club, unfortunately it isn’t free.
        And I understand, growing up poor my mother could afford very little. The interests I did have, I had to sort of keep to myself or use what I had because my mother could afford anything more. I loved and still love to draw. But the art supplies were non-existent in my home. All I could do is take advantage of art class at school.
        You’re not alone! I’m there with ya’! Don’t know who the heck I am. But God does, and that’s all that matters. 😊🙏🏽

        Liked by 1 person

      3. I’m glad you share your experiences with me. It really helps! And makes me like people actually care about me. I don’t know what’s wrong with me lately. But I’m not going to bother you with it.

        Liked by 1 person

      4. Don’t allow the devil to bring you down, anytime, but especially this time of year. He talks to us all the time, and if we start to listen, we also start to believe his lies.
        Courage! Be strong! You’re enough, you have an amazing family that loves you as you are!
        You’re not a bother.

        Liked by 1 person

      5. So glad to hear! That’s right, we woke up this morning, have little to nothing to complain about. Got the news today, an older brother from church passed away. His wife passed away earlier this year, so he was ready to go be with her again.
        Yes, as I’ve gotten older, I notice the years going by faster and faster. It’s nice to stop and take everything in. 😌🙏🏽

        Liked by 1 person

      6. For some odd reason, your I found some of your comments in the spam box. Ugh! Don’t know why?!
        Yes, and I’m not much of a hoarder, people know if I offer them something, they need to pick it up asap. But still, there is so much, which only reminds me of how fortunate we truly are. 🙂

        Liked by 1 person

  1. So relatable. I can say that I’ve witnessed my daughter’s autistic behaviors shift and change. Example…she wouldn’t let me hug on her much as a little girl but now at 24 she is free with her affection.I’ve witnessed her heal in some areas too. Some would say it’s maturity, I say it’s God! Can I put this in my next post picks?

    Liked by 1 person

    1. Yes, my son is that way too. The affection is on his terms. If I try to hug him, he’ll kind of squirm away – if that makes any sense. Oh yes Amy! It’s God! I agree.
      It’s incredibly tough at times to go out with him, because he gets nervous, and anxious and all. And people can really misinterpret his behaviors as him being a ‘bad boy’ or perhaps just plain strange. But that’s where I think, people need to be educated on the matter. It’s hard though as I think that sometimes it’s not until a diagnosis hit you personally that you finally take the time to educate yourself on it. It’s an unfortunate truth.
      Yes, of course Amy! I’m both so humbled and excited! Thank you for wanting to share the post with your followers. 😊🙏🏽

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  2. Ana-thanks so much for sharing your son’s story. I’m a speech therapist who works with the 0-3 population. So many of those little ones show definite red flags for autism. One of my most satisfying moments is hearing from parents and other therapists that the diagnosis was confirmed. Lots of parents don’t like “labels”, but in the case of kids with autism, the earlier the diagnosis the better. I plan to cover autism topics in my new blog. Keep it up. Blessings.

    Liked by 1 person

    1. Thank you so much! He continues his speech therapy at school. He also continues to have the same therapist as he doesn’t do well with change, and since he changes teachers each year for the obvious reasons – changes in grade, the school and I decided to keep the therapist. That way the transitions in grades aren’t has bad for him. He’s 8 years old now, as of April, but is still behind on his speech. What is the 0-3 population? Is it the Childrens ages? I’m following you – can’t wait to read more about it. Yes, I don’t think it’s a label as it is helpful to finally have answers to my sons behavior. He’s currently going through different types of ‘fidgety’ behaviors. I’ve noticed every couple months they’ll change. He’s now biting on his shirt collar – last month it was him, twisting the front part of his hair. It changes! Also, when he gets excited, he hits – not out of being ‘bad’ but because he gets happy and excited. He older he gets though, I’ve noticed the hits get harder. I try not to discipline him, but rather show him better ways of expressing his emotions. It’s a daily thing, you know?! Daily.

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      1. The “0-3” population refers to the ages of the children I see. They’re tiny, and a bundle of energy! I can’t keep up! I noticed that my other blog, the late-blooming drummer, received a “like” from you. I have to find a way to separate it from my speech blog. I just started “the Communication Corner,” so yes, thank you for checking it out and I hope to add more content very soon! The biting/chewing and hitting behaviors you describe sound very familiar. I’ve seen them before. Just curious-does he get Occupational Therapy? I’m not an Occupational Therapist, and don’t know enough about sensory processing, but wonder if it’s related to that in some way. Yes, it is a daily thing, and it all takes time. Best to you and your family! Jessica

        Liked by 1 person

      2. Thank you so much! You have two blogs, ok. Good to know! He was getting OT but was released last year, so beginning of his 3 grade year at school, the OT stopped. His Speech however has continued, he’s had since he was about 1 1/2 yrs old and then transitioned in pre k 3, he’s had the same therapist all this time – she’s great! And he adores her! I do notice his is self aware and I only say that because he doesn’t have these behaviors at school. He’s in an inclusion class, so all the kids in the classroom do not all require ‘special’ attention. I do see though the teachers don’t specialize in autism. Aside from his ‘mild’ autism diagnosis he has ADD. He’s not hyperactive, he speaks, but just barely to people he doesn’t know. Thank you Jessica for creating a blog! You’re a phenomenal source to parents like myself! 😊💛

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