Progress and Acceptance

 

Olive’s last I.E.P meeting went really well. I went fully prepared for the daunting task of reviewing all her areas of struggle. I normally dread these meetings just for the fact I generally leave feeling upset, facing just how far behind she truly is. This one was different. I was told she was doing wonderful. In areas like math she was at the average percentile. Since school started there has been no issues with transitioning classes, or changing activities.

She’s been playing well with others and appropriately. She is making friends! There has been no meltdowns, and she seems genuinely happy to be there.

To my surprise they decided to remove behavioral therapy from her I.E.P, they see no reason to continue when she has been doing so well. Olive now also spends about 90% of her time in the classroom being amongst her peers. It was so hard not cry tears of joy upon hearing the great news. She will now be primarily focusing on speech, language skills, reading, and occupational therapy. Olive was non-verbal for most of her life, and has delays in certain areas of speech. This past year, more than ever we’ve noticed her speech being ‘normal’ one week, then kind of become jumbled by the next. She has a hard time with ‘Th’ and “S” sounds. She also will sometimes pronounce part of a word- leaving off the ending sound. But so far she’s moving along at a steady pace, continuing to engage, and make the most out of her therapies.

Yesterday I was at the grocery store, and struck up a conversation with the cashier. We were discussing the outrageous costs of therapy, and medications. She had explained to me how her daughter has a condition with her thyroid, that also effects her brain. She has to take medication daily to keep her well and functioning. The medication unfortunately is very expensive. As we wrapped up our conversation, I turned to leave and another cashier approached me.

She told me her sister has Autism.

And then proceeded to tell me how smart and talented she is. She told to me about her sister’s Etsy shop and the beautiful things she knits. She shared how excited she was for sister to finish knitting her Christmas gift. I couldn’t help but to feel overcome with emotion to the point of almost crying as I watched her face light up. She told me her sister was only one semester from receiving her masters degree. I see her eyes begin to water as she tells me how proud her and her family are. I at this point have become completely moved by the out pour of love and admiration she has for her sister. It took everything in me to not cry.

As I walked out the store and then to my car, I finally let myself feel. You’d think after 4 years I could carry a conversation about Autism without it hijacking my emotions mid sentence. I came home and cried some more. I wasn’t sad or even reflecting on my own situation. I was just genuinely happy to hear someone with Autism happy, thriving, and appreciated.

That’s something I’ve noticed in this journey as time goes on, it’s become less about how to ‘fix’ my child and more about promoting acceptance and awareness. It’s celebrating the little things, and finding joy in another person’s accomplishments, regardless of what your personal situation is. In the beginning I would feel jealous and even sad when I’d see other children doing so well. I stopped comparing my child to other children and stopped being bitter. Everyday I would feel hopeless when I thought about the unseen future that lies ahead.

Instead I started taking one day at a time, and choosing to be happy. Yesterday was so much more than just being moved by someone else’s story. It showed me how far I’ve come in my own personal journey of acceptance. I’m not happy my child has Autism, but I’m not angry anymore.

 
 

Dear Parents, You Are Human

 

Parenting is no easy feat. It’s messy, unpredictable and at times exhausting. Throw in Autism and a couple co-existing conditions into the mix, chaos is inevitable. No one quite understands the long sleepless nights, the random spouts of aggression, witnessing your child struggle daily, the endless list of appointments and therapies, or the fear you carry daily about your child’s future. The weight of all the hard questions with no concrete answers, can leave you feeling drained or even angry. It’s okay to admit that Autism is hard and you feel you are at your wits end.

None of these feeling in any way over shadow your love for your child. You are still a good parent. You are allowed to have bad days where you just want to curl up in bed and cry. You’re allowed to feel a vast array of feelings without guilt. There’s nothing easy about Autism, for your child or for you. Ignore the sugar coated social media posts, and remember these people are only choosing to show the positive aspects of their lives.

No one’s life is perfect, and no one has it all figured out. We are all just doing the best that we can, and praying for a good outcome.

A lot parents carry guilt for harboring feelings of sadness or anger in regards to Autism. As if you’re not allowed to feel drained after a meltdown, or you shouldn’t be upset when your day turns sour due to a sensory overload, or you that you don’t need time to decompress yourself. None of this true, you’re allowed to feel. You can still be a loving parent and feel sad about the tough stuff, because after all you are human.

Take your pain, and your overwhelming sadness at the moment and face it. It’s okay to be mad or even angry, but don't dwell on it too long. Recognizing your emotions isn’t the problem. It’s what you do with your feelings and how you express them that matters.

Darkness tends to spread rapidly inside us at our most vaunrerable moments, causing us to sometimes get stuck in the dark.

Acknowledge it, wallow in it as long as you need to, and then leave it behind. There is no heavier weight to carry than anger, resentment, and sadness. It will weigh you down, and wear you out, until there is nothing left. And honestly I’ve felt that way myself more than once. It’s not an easy hill to climb, and takes time to come back from, but it’s not impossible. A great parent never gives up, even when faced with the seemingly impossible. Accept your feelings for what they are and then move on. Work through what you’re feeling whether that be through talking with a friend or counselor, or just writing down how you’re feeling at the moment. Don’t just leave it to settle and fester within you. Don’t get left in the dark. And most importantly don’t miss out on the amazing child in front of you because you’re too busy being mad about something you have zero control over.

LET IT GO.

 

Disability Awareness

 

At the end of the day all children want to be understood and accepted. They want to be included and be amongst their peers. Children are both curious and observant. As parents, it’s our job to nurture our child’s curiosity, and to teach them about the world around them. We attempt to model kindness in hopes of fostering compassion and empathy in our children. We continuously preach the importance of sharing, and how to treat others. What happens when one your child’s questions are directed towards a person with a disability? Time and time again, the response I see most is a parent scolding or silencing their child on the matter.

By not answering the questions or responding in a negative way, you are giving off the impression that there is something shameful or wrong with having a disability.

I encourage you to use take some time to teach your child about disability awareness. Disability awareness is the educating of others on disabilities and impairments. It also includes providing the proper support and information for a person with a disbaility to efficiently carry out a task or job. The ADA has created several regulations including laws that require buildings to be wheel chair accessible, requirements on ADA braille signs, and making discrimination against someone with a disability unlawful.

1 in 20 children have a disability. This means there are millions of children who are facing some sort of impairment or condition.

Society has come far in the accommodations for those who have a disabilites, but still have far to go in the acts of acceptance and employment. Help break down the stereotypes and misconceptions that follow those who have disabilities, and have the conversation. Unsure where to start?

Here’s 5 tips on explaining disability awareness to your child.

  1. Use Correct and Respectful Terminology: When your child begins to ask questions or has made a remark about a person who has a disbailty, it’s important you address the remark. When speaking to your child make sure you are being straight forward and matter of fact. Always be sure to use appropriate terms, and stray away from outdated terminology. The use of words like retarded, wheel chair bound, handicapped, hearing impaired, the disabled, and cripple are equally offensive and out-dated. Using a ‘person first’ language is widely accepted within the special needs community. Some examples would be a person hard of hearing, a person who is intellectually disabled, a person with a disability, or a person who uses a wheel chair. Be sure to speak in a positive manner when explaining that people have different needs. And make sure they understand there is nothing wrong with being different.

  2. Explaining Wheel Chairs: When children first see a wheel chair they are understandably curious. What is that? Why can’t she walk? Is he sick? This is when you need to explain that a wheel chair is a means of helping a person get where they need to go. Sometimes people aren’t able to walk well or at all. A wheel chair is a means for a person to be independent and without assistance. Children commonly assume a wheel chair means someone is sick or hurt. Explain that they are not ill, and once again a wheel chair is a means of getting around efficiently.

    It’s easy to assume a person might need a helping hand, but before you jump up to assist your friend- ask first. Be sure to make eye contact or get on eye level with someone who is using a wheel chair. Things like leaning or hanging on someone’s wheel chair is unacceptable. remind your child that a wheel chair is NOT a toy. Do not attempt to navigate a person, unless they’ve requested your help. If you’re unsure if you should assist a person, just ask. No harm done. What it comes down to it be respectful, always ask first, and make eye contact.

  3. Be Straight Forward and Positive: When explaining to your child about someone who has special needs or a disability it’s important to explain yourself in a matter of fact way to prevent any room for misconceptions. Talk to your child about how some people have different needs, and emphasize the importance of being kind to all. Encourage them to make friendships with those who appear different or look like they need a friend. I am by no means saying that you are to tell your child who to be-friend. What I am saying is emphasize the importance of inclusion and give them a positive sense of others who appear different.

  4. Answering Your Child’s Questions: Realistically it’s impossible to know exactly what to say when your child comes at you with an unexpected question.

    Here’s a few examples to help fill those blanks.

    Example:
    Your child asks why someone is in a wheel chair. You can respond that she uses a wheel chair because it makes it easier for her to get around. Sometimes people aren’t able to walk or have trouble walking, and this is way for her to do that easily. Plain and simple.


    Example: Your child notices someone is non-verbal and asks why. Talk to your child about how everyone is different and unique. Explain how people have different ways of communicating. And that just because they don’t speak doesn’t mean they are not able to hear or understand what you’re saying. There are numerous ways of communication that aren’t verbal. People communicate through body language, eye contact, stimming, facial expression, tone, sign language, computer generated speech, assistive communication apps, and more. And lastly non-verbal does not mean stupid or that an individual has a low I.Q.

    Example: Your child asks about the behavior of a person who has Autism. At this point your child maybe confused and making all sorts of observations. Understand they are curious and are probably waiting for you to respond or react. Firstly, SMILE. Then proceed to tell them that some people interact and feel things differently. And that this isn’t wrong or bad behavior. You can mention how sometimes people have certain sensitivities that cause them react in a ‘different’ way that their used to. And thats okay! You yourself can break the ice by saying hello and greeting them, just as you would anyone else. If your child asks about someone wearing noise canceling head phones, you can just easily explain how they may have sensitive hearing. And with the help of noise canceling head phones, it lets a person be able to focus and not become too overwhelmed. Be sure to mention that someone can still hear you while wearing their headphones. This is a common misconception that leads people to not interact with those wearing them.

  5. Bullying: It’s not enough to assume your child isn’t capable of bullying, or that it’s not in their character. When you assume your child knows better, you’re putting your child at risk of being a bully. It doesn’t take much for children to gang up on someone for something- anything. Children partake in making fun of others for numerous reasons. Sometimes that person feels bad about themselves, or is reflecting learned behavior. Whatever the reason there is absolutely no excuse for bullying. Make it clear to your child that bullying does not just consist of name calling. It’s isolating someone, singling someone out, treating someone with little or no respect, or making someone feel less. And lastly bullying is absolutely unacceptable behavior.

    The overall goal of disability awareness is to promote inclusion and educate the public on people with disabilities. We still as a society have far to go in disability acceptance and inclusion. You are your child’s biggest role model. All of this starts at home with you. Learn the facts and talk to your children about disability awareness.

 

School is Back in Session

 
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A lot can change in a year.

A year ago my daughter couldn't write her name, or tell you what she did at school that day. I had concerns of her wandering off (more like nightmares), and literally couldn't imagine her walking to class every morning- alone. How was she going to navigate through out the school day without her personal buffer from all things meltdown worthy? My anxiety was at an all time high and I frequently questioned if it would be too much. 

By the end of the year, the amount of knowledge and personal growth she displayed completely restored my faith in the public school system. The first year wasn't easy, despite seeing my child excited about learning, it was hard watching her struggle to keep up. And even more so, because she began to take notice. At the end of the year during her last IEP meeting, we all agreed that it was best interest she repeat kindergarten this year. It's a weird feeling. It was apparent all through out the year that she would benefit most from having the same teachers and doing the school year over again. Yet, I couldn't help but still feel my throat begin to swell with sadness, while my eyes remain stoic, trying to appear fine. I had no idea how I was going to begin to explain this to her. Especially because at the end of the year she couldn't stop asking, "After kindergarten is first grade right? So I'm going to first grade.", and then would start repeating how she was going to the 1st grade. I knew this was going to be a challenge and potentially heart breaking.

Over the summer I would casually try to correct her and explain that when she learned everything there is to learn, then she would go to the first grade. She would just then attempt to correct me by reminding me, after kindergarten is the first grade. She wasn't budging. After reiterating myself in every way possible, by the end of the summer she seemed to understand and accept it. The only issue was the fact she wouldn't have the same classmates as the previous year, which is totally understandable. The first thing she said this year at the 'teachers meet and greet' was, "Why isn't her name on here?". Clearly having just looked over the name chart. "..I don't see p-i-p-e-r, piper. There's no Piper?" I was both proud and impressed. 

It's only been a few days into the new school year, so we're still trying to establish a routine that works for us. This year will be different for many reasons, mainly being we know what to expect this time around.

Just as Olive has grown and changed, so has her needs. 

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There is still other aspects in school, like interacting with her peers 'appropriately' that seem some what foreign to her. I hadn't realized this until visiting the classroom through out the year, and watching her interact with her with other children. She's always friendly and has so much to say, but it's what she says. And also how she says it. Their reactions and facial expressions when she'd do or say something unexpected would range from confused and uninterested to engaged and excited. I couldn't tell if she was aware or unable to gauge their responses accurately. It's so different watching her interact with other children from afar, especially one she doesn't know. 

Most recently at soccer practice. She gets very loud, unable to contain herself from movement, and reverts back to noises rather than speech. I can't tell if she's nervous or gets too excited. Normally, around her friends and family she sees regularly, she'll for the most part interact in a 'normal' fashion. She'll respond to questions, share information, and form sentences when speaking, but her hyperactive behavior always remains.

Over the summer we had a really hard time once school ended. The structured routine we had laid before her had diminished, and so did a lot of her ability to cope. For most of the day she would be on edge or troubled with anxiety. She wasn't sleeping, and she became more fearful of the unexpected. Her stomach issues started popping up more and more frequently. She was clearly having a hard time. Yesterday the girls started soccer. I'm interested to see how Olive does with juggling a sport and school. Usually she requires more time to decompress in between activities, which worries me. But what worries me more is her continuing on as she is right now. Overall, they both did great and had a lot of fun. We're pretty much starting from scratch in regards to Olive's routine this year. We've made changes to her eating habits, sleeping habits (no more screen time during bedtime.), and now adding soccer into the mix. I can already tell, this is going to be her year.