autism · love

Connect the Dots

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She doesn’t know how to make meaningful connections I’m told. She lives in her own little world I’m told. She learns at a different pace and level I’m told. Yes some of this is true but that little girl runs to me when I get home from work, she hugs me and tries to say Mom. She cuddles with me at night and we laugh together over favorite songs and dance. That little girl makes sounds of joy while on the way to grandpas house just by noticing the scenery around, she knows where we are going.

Yes she in unaware of things that will hurt her. Yes there is a lot we have to work on with her speech development but she tries to communicate. She will grab your hand and pull it to the on and off switch on her toys because she can’t tell you she wants it on or do it herself… but that alone is her telling us things without words.. she tries so hard!!

Of course she lives differently and she lives in her own little world, this i know. But that little girl understands things in her own way, she makes meaningful connections and loves others. She is a beautiful person and not just because she is mine, she is so sweet and her smile is contagious. I strive to be more like that… leave a little sparkle wherever you go type of life…

We have been to plenty of specialists, therapist and appointments and yes more are to come. But one thing that resonates in my head is the fact of being told that usually autistic children have a hard time making emotional connections. I call BS on this. Everyone is different, even those with no medical issues. We are all unique and even those on this spectrum in life are unique. She is not defined by being “autistic” she is my daughter and she loves me and shows me this.

She loves her family and she shows them too, yes we have to take her to therapy and yes there is a lot of work to help her in life in general but she gives a shit hello people!!! I just think it’s not right to say that due to one being a certain way in life they are like this or like that. There is no one person exactly alike, even twins. They are not the exact same they may look like little replicas but they are not a  perfect match in every way… nope sorry folks. God made us to be different. This was a great thing.. think how bored we would be otherwise… it would be almost robotic in a sense.

I understand that there are a handful of “behaviors” those on the spectrum generally show in life… I get it… But I have also noticed that when I tell someone my daughter is autistic, there are 2 kinds of people… those who are open and those who are closed to this word they hear. It’s hard to see that look on someones face change… kinda want to slap it off for them and tell them to smile, i wont though don’t worry. But yes the thought crossed my mind and this “mama bear” gets fierce. I would do that for anyone though, If I saw someone in trouble I would help… would you??

So to those people with the crappy look on your face because you lack knowledge, shame on you and your “behaviors”… I wish that those on the spectrum could understand that the label doesn’t make them a burden in life at all. It makes that person even better, makes them unique and I think courageous to take on this world with a different view. I salute my little gal for kicking butt in this world even on her hardest days when I know she wants to tell me something so bad but can’t…

Someday her brain may connect the dots for her and she will surpass everything we have been told she would not be able to do… Someday she may be able to understand that you can’t walk into the street because cars can run you over… That day isn’t yet but we are getting there more and more each day… telling her No doesn’t work as it should but maybe it will someday. And if she wakes up tomorrow and tells me.. Mom I want pancakes.. well this mom is going to jump up and down and make those pancakes 🙂 …

There is a world out there waiting for her to reach and like I’ve said before in my posts, I pray I’ll be there. I hope Savannah or my sister or brother will step in and BE THERE FOR HER… not put her in a home, but really guide her and love her and keep her safe from the harm in this life… if that day comes I sure hope she has someone who will do the right thing for her… even one of my friends I just want her to be okay and for her to feel safe… as parents we want what is best for our children, once we have them we learn a new way to live and they come first in so many ways…

If you have ever  been told something that has made you feel like you can’t accomplish something in life do not feel that way, you are so much more than you understand. You are great and you are wonderful and this world needs you because without you it would be boring. Being different on any level is great.. and you can make it even better by being positive and helping others. -K-

Im asking for some answers with POSITIVE VIBES HERE 🙂 

  • Are you autistic if so were you ever non-verbal? and did you over come this?
  • How do you connect with others?
  • What does being on the spectrum mean to you?

  • Have you made a connection with someone on the autism spectrum?

Please please feel free to comment and respond, I would love to know your thoughts… Or even give me some advice, I’m only 3 years into this adventure with McKinley and anything helps…

🙂

22 thoughts on “Connect the Dots

  1. Hi there 🙂
    I read your post here and really like it. I have ASD (specifically Asperger Syndrome), and I wasn’t diagnosed until I was 33 years old. I struggled without assistance for my entire childhood and nearly all my adult life so far – so I would first like to congratulate McKinley and yourselves for getting this diagnosis early in her life, so you can all understand what you are up against. As someone who spent three decades wondering why everything was so difficult, I can say it is definitely better to know, than to not know!

    Secondly, I would like to answer, from my own point of view, a couple of your questions you posed from my own point of view… I hope they might help have some information about how another female with ASD sees things and deals with things?

    As someone with Asperger’s, I can be a little of the opposite of many people with ASD – I can be quite hyperactively verbal, have always been highly intelligent, and above average in most things academic from the beginning. It made my abilities beyond my peers and so I was ostracised for it, but I didn’t mind too much because I liked my own company. What I couldn’t do was speak to people, and I didn’t want to. I do find it far too difficult to understand others, and that intimidates, confuses and frightens me. I see other “normal/neurotical” people and their way of thinking and behaviours at odds with my own. Understanding things from their point of view is very important to me, having things explained (even silly things to other people are huge and confusing to me) in a fashion I can understand is important to me.

    I can make connections with special people – those that I am able to communicate with on my own level, where they are open and friendly without being intimidating, are people I can speak to, get along with, and even like. I have no time for those who don’t accept me, and I just prefer to ignore them. When I make a connection, it’s with few people, but that affection is absolute. I have a handful of best friends who I would do anything for, and I love my parents, grandparents, and my sister and her partner (and I will love their child, my niece, when she is born). You’re right in saying that the assumption of “those with ASD cannot make connections” is BS – it is. They absolutely do, it’s just different to how “normal” people think of it. But it doens’t make it any less. Just different.

    How I personally think and see the world is very similar to a computer – I see or hear things, process them, then give what I see is a logical output. If what I experience confuses me, the output will also be confusion. When those things are explained to me, then they make sense and I can go ahead and process them, and I’m OK with it. I find feelings that happen inside me horribly confusing because I never have and I never will understand them (that was a hard one to come to terms with), so people explain them to me in a way I understand and then I feel my equilibrium coming back. It’s the reason I love computers themselves, they make sense, they’re understandable and consistent! I do not know how to deal with emotions, so when people experience them I get confused and usually guess (wrongly!) what’s going on. I deal only with facts, and generally see the world in a “black-and-white” fashion. Many idioms still go over my head, as do metaphors, tone of voice, and (to me) facial expressions pretty much don’t exist. Yes, I can understand that everybody else will see this as a strange world to live in – but to me that is my own happy normal and I prefer it like that, because that is what I know. I also like patterns, routines, things done in a certain order, and get easily fixated on things that then take up my whole brain and life – and all this is what “normal” people would term “my happy place”. These are some things not to be questioned, as long as it doesn’t interfere with daily routines or commitments (which cannot be broken), because this is how I relax, away from the hectic and scary world outside of it that I’m forced to interact with. It was why I made one of my fixations my job, so I could do it all the time and earn a living at the same time!

    Patience is key when interacting with someone with ASD, and with it (as well as understanding each person’s particular processing abilities and ways) you can achieve a lot of understanding, making their world a better, safer, and easier place to live. We find the “normal” world very difficult to live in and understand. It has things that confuses and frightens us – what “normal” people take for granted, we cannot understand, or it hurts us. Sensory overload is horrific and can be caused by the smallest of things and can cause a catastrophic break inside us that we cannot control – from the touch of a fabric, to a sound, a scare, or bright lights (it can be almost anything, depending on the person). My way of dealing with these is to have specific noise-cancelling earphones for noises I don’t like, sunglasses for bright lights (from fluorescent lights to bright sunlight, or even flashlights in the dark), I have an eye mask and blackout curtains for sleeping, I avoid certain things or places I know I cannot deal with, and the people around me are now very understanding and know how to help keep me calm and in some control during difficult episodes or panic attacks. I still even now get meltdowns – but at least I know what they are now, and how best to avoid them.

    I did not have as much trouble when I was younger as I do now, not since I was maybe 4 or 5 years old, and started learning how to emulate how “normal” people behave, speak and live. I once had a good life in London, working as an IT consultant for a prominent hospital, with a partner and dog, and lived indipendently. It was only when I had my illness and had to take medication that affects your brain a little, that the severity of what I was unknowingly controlling subconsciously really came to light. It was only when the severity of it was so clear that I was finally given an answer to everything and my formal diagnosis (which I literally had to yell at people to get, unfortunately). I therefore say there is no reason, with the right long-term support that people with ASD are perfectly able to intergrate into the “neurotypical” world, particularly if those around them are patient and willing to meet them halfway and learn about the ASD world too.

    I like my ASD. It’s about the only thing I like about myself right now, to be honest. It has helped me with my life a lot. My Aspergers got me my favourite job and made me good at working with computers – which also thusly allows me to help those who aren’t tech-savvy learn about them, and I can also fix them. It helps me see the world differently. It helped me be a singer, a songwriter, a performer, a dancer. It’s helped me be an artist in music, in songwriting, in painting when I ways younger, in writing, even playing games. It’s helped me assist my partner in a serious work issue, where I became an advocate and letter-writer and prevented the employer in doing something terrible for no reason. It’s helped me assist others in being able to navigate complex and difficult things I had no difficulty understanding. I might not be able to look people in the eye or speak to a checkout clerk, but I can fix complex issues for others, which they in turn cannot do. It’s a yin-yang balance, where I focus on my own abilities and don’t worry too much about the things I cannot do.

    As someone once said, it’s not “broken” to be Austistic, it’s just a different operating system. And just as you can’t put Apple Mac or iPad things on a Windows computer or an Android phone, those who are Autistic work in a different way to “neurotypicals”. It’s not “wrong”. Just different.

    And I, personally, am very proud to be an “Aspie” and “Autie” (they sound cuter than the full names!).

    Now, I do apologise that this is rather a long reply, and of course you do not have to approve it! However, if for any reason you would care to ask any questions or clarify anything in my ramblings, I would be very happy to answer them.

    Take care, and continue to be an excellent mother to McKinley! She looks like she’s doing just amazing 🙂 xx

    Liked by 2 people

    1. 🙂 Your reply to my questions is excellent!! I thank you very much for explaining everything the way you did. Like I said I’m really trying to learn any way to help my daughter in life. Learning how others with ASD interact in the world is key to this. I loved reading your response and about your accomplishments in life. Hearing this gave me hope in ways I can’t even explain… This is amazing! My outlook on her future is so blurred by everything I’ve been told by doctors that hearing from you on your triumphs in life is awesome.. it helps me see things better for her… You are a fantastic person in life with all that you do and for you to explain to me in detail how you interact and especially your thoughts and the part about sensory overload is so great for me. I have found recently with McKinley that she is starting to feel the issues with sensory overload for her, it’s hard to watch of course as her mom I don’t want her in any kind of distress but I know that she is going to go through this at times so finding a way to help her through it is so important to me. Her biggest help right now seems to singing her a song, music is a great thing for her. She does get very upset though when her favorite song ends.. but even so music is so wonderful to her. I have had to actually take away her toys and items from her due to them causing such grief for her… She loves any electronic device and It sure would be amazing if she could make a career out of that someday in the IT world or anywhere… Your response inspired me, so for that I thank you so much! And I can imagine I would have questions down the road so if you hear from me again don’t be surprised. Thank you and I hope the best for you everyday. It’s better to be your own kind of “normal” in this world…

      Liked by 2 people

      1. Hi 🙂

        I’m so very glad I could be of some help… I guess I know I would have liked to be told “it really is going to get better” when I was younger, so I now like to try and “pass it on” if I can. My own mother currently struggles with guilt of not knowing and not being able to help me from when I was little. We went though many years of much grief and turmoil simply because we didn’t have a correct diagnosis (the doctors wrote me off as “depressed” as well as a hyperchondriact from the age of 12 and left it at that!) – so now she knows about the ASD she feels she was robbed of the ability to help me be the best she can be. Passing it on helps with that healing; in trying to help someone else avoid those same pitfalls we fell right into, it really does help us as well as the recipient.

        Despite my mom not knowing what was going on with me, the other side of that was her own instinct, and relying on it. Regardless of having no help or even an ASD diagnosis, she still gave me a great platform to work with, to grow up with. She knew to set rules, so I knew what was expected of me (boundaries, rules and knowning them are very important). She knew how to give me confidence to do things I was afraid of… mainly by telling me I was going to be fine, she was there, and giving me clear step-by-step instructions about what I was going to do and what to expect. She allowed my idiosyncrasies as long as they didn’t interfere with my understanding of interacting with the world. I was “different” but no one knew why – however, my mother mainly stuck to what she knew about me and learnt how to read me, how to “make it safe”, and learnt along with me what a compromise with the “normal” world was. My point is that, don’t listen to the “professionals” if your instincts tell you otherwise – moms always know best, and if mine hadn’t been stubborn and helped me the way she did, I would not have been the person I am today. I didn’t even have ASD professionals, just the general local doctor(s) we saw, nor even a diagnosis, and I yet didn’t turn out too badly!

        McKinley does sound a lot like me when I was younger. I had a favourite song I used to go to sleep with when I was a baby and wake if it ended. I knew every move, word and song of Mary Poppins when I was three, and loved She-Ra almost as much. Every now and again, the fixation would change to something else, but that fixation got me through life, onto the West End Stages, though really hard times (like now!). It’s been my saviour, and it’s no disability when used right! She has a good life ahead of her, if helped to harness the best the ASD brings out, and to learn to use tools to make the rest easier on her (like always having sunglasses to hand if she doesn’t like bright lights, and teaching her to do it herself, for instance, using cute ones that are fun to wear!).

        The fact she is now starting to feel the sensory overload is the time to find “tools” to help (a tent-bed, or blackout curtains, or noise-cancelling headphones, etc) and to help her learn what to use, when to use them, and to practice carrying them around with her, like in her own little rucksack – I cannot tell you how much I loved carrying my own things when I was little in a little rucksack with a favourite character on, that level of control and responsibility to a 5 year old was wonderful! That way as she grows it will be so much her own brand of normal she will never suffer from them half as much as she would otherwise, it will be just “normal”. She’ll think nothing of it. Nothing is a “dis”ability if you enable a person to live within it and regardless of it. Do not pity her, simply enable her to live within her ASD parameters and she’ll think nothing of it. If you make these things her own “normal” now, it will make huge differences later! I would have loved to have known this stuff and made it “normal” when I was growing up, I assure you!

        I know from her own stories, my mother went through the same things as you describe, but she didn’t have a diagnosis… and perhaps that may have been better in som ways, because I get the feeling the diagnosis and the “expectations” regarding it can sometimes feel even more disabling than the symptoms McKinley herself can experience. Always remember it’s not an “illness”; it’s just a different way of processing the world and everything in it. It’s a condition, and it has its pros and cons – like it unfortunately has many “side effects” such as like colic and gastro-difficulties (like I have), or you can get seonsry overload, feel extra-sensitive to pain others can’t feel, or have trouble with sleeping – and it’s always better to be aware, but never to be dictated to by expectations. As long as she is well-supported to go down her own pathway, McKinley will do well and have a good future ahead. Each person with ASD will have their own stories, and no two are the same, although will share similarities. All those well-supported have good lives – whether or not that’s by “normal” standards is neither here nor there. If she likes it, if she is happy with it, then that’s all that matters.

        Within all these ramblings are one main point – make her life and her ASD symptoms, as well as her strengths, into her very own “normal”. Listen to your own self – no one knows your daughter better than her own parents (I’m 36 and that’s still 100% true!). Make it your own normal too, as in don’t compare your lives as parents, or her life, to others’. You’re on a different path, and that path is not wrong, just different. Keep your heads high and walk it with pride – for I can attest it is something to be immensely proud of. It doesn’t not need to be justified, not to anyone. Like everyone, you do your best, and to do ensure that you have all possible information available on what can help (from those who lived it, rather than medical professionals), and only then make the most appropriate choices for you all, regardless of others’ input. I was told by psychiatric professionals at the age of 15 I was a “lost cause”. I can’t say how proud I am to have proven them wrong six ways from Sunday! 🙂

        Please contact me whenever you please regarding any questions. It pleases me to “pass it on” – it makes all the struggle worthwhile to impart the lessons learnt to someone else.

        If you wish for mom-to-mom advice at all, my mother would be a valuable resource of information – she had to wait 33 years to be vindicated in her knowledge that I was “just different”, and not crazy – seriously, that’s what the so-called professionals thought of me. But since she has been struggling with the lack of help that was available. I know she would also very much like to “pass it on” as well, since it would also have made her struggle worth something, too. I can put you in contact with her as well, if you would ever wish to talk to someone else who has already been through it all before, and many decades ago now, too!

        I do hope at least some of these ramblings made a little sense!

        I wish you all well and good luck, and keep on going! xx

        Liked by 2 people

  2. you have a beautiful touching blog and i would like to send you two of my poems that i wrote, because one of my granddaughters is autistic . this is the first one , and i will send the second one right after.

    DADDY WHY AM I SO DIFFERENT

    The father watched his daughter looking out the window
    Feeling so glum, when she turned and asked him:
    Daddy! Why am I so different?
    Why can’t I jump and run and have some fun?
    I know I can’t run as fast or jump as high
    But I’m willing to give it a try!
    Her father looked at her and thought about what he was going to say

    You see when God made mankind, everyone gave him thanks and praise
    To God, but as time went by people started changing and giving
    Less thanks and praise
    So God decided that he would make special children who could remind
    The world of what they are missing.
    These special children saw more dreams than most other children.

    A child would dream about riding a big white horse
    While the special children could see a big white horse with wings
    To take them any where in the world
    Other kids dreamed about being kings and queens in far away lands
    While special kids saw themselves as kings and queens
    Helping others to follow their dreams.

    Now the world has opened up their eyes and created ” special Olympics ”
    He called these children ” visionaries with special needs.
    Yes my daughter! You are different in so many ways
    But the world needs you so they don’t go astray.
    You see things that others will not, because you have a special gift
    That others have not!

    GOD gave me the four things I need in this life
    Faith, hope, love, and YOU!
    © L. RAMS 041816

    Liked by 3 people

    1. This is so perfect ❤️thank you for sharing it means a lot. Your words in your poetry are profound they have such wonderful meaning and i agree with the truth behind how you wrote about God making certain kids so special to share their joy with the world. You are a really good poet and I bet your an even better grandfather… thank you for the amazing share it was great 😊❤️

      Liked by 1 person

      1. you honor me with your words and i feel and truly believe that GOD gives me the words to write as his tool , i have written over 1000 poems regarding abuse, homelessness, love, faith ,etc. and a series i called ” stories of hope ” which i am proud of .
        your struggles and love has truly touched me and reminded me of the loves that still exisit in this world and i thank you for that. BLESSINGS TO YOU AND YOUR FAMILY !

        Liked by 2 people

  3. this is the second one !
    Bipolar – Poem by louis rams
    The word bipolar can put fear in your heart
    Because you’ll never know when it will start.
    Also known as manic depression and it can become
    A lifelong obsession.
    Wondering when the next bout of fear will enter you
    And if you know just what to do.
    It is like the devil trying to take your soul
    And it becomes a battle of control.
    Most times in order for you to live
    You must take the meds that they give.
    If your child is bipolar or autistic, will you love them any less?
    I don’t think so is my guess!
    The LORD puts a child where he / she belongs
    With a person he knows is strong.
    The strength of the parents helps them to cope
    With the problems old and new, and that is
    Something that they do.
    Let us be a little realistic, not many crimes
    Are committed by bipolar or autistic
    So how can they use words like crazy, retarted or handicapped
    When against us the cards are stacked,
    When this becomes a challenge close to home
    Remember that you’re not alone.

    Liked by 2 people

  4. I am one of the lucky ones, whose only child was and is exceptional in his mental abilities. Faced with such a different scenario, I’m not sure I could have handled it with the grace, guts, strength and passion you have shown. McKinley is fortunate to have you for a mother and an advocate. I truly admire your grit, as well as your ability to find the happiness in having such a special little girl. You are each other’s treasures. 🙂

    Liked by 1 person

      1. McKinley

        part of her life she lives in a world of fantasy and dreams
        and plays with people and things seen and unseen.
        she knows the route when she gets into the car
        going to grannies who doesn’t live far.
        she wakes up in the morning with a smile on her face
        but still has to learn the dangers that are in place.
        in her world there is no dangers that she sees
        so she can run and play happily.
        in both her worlds she sees butterflies and birds
        and recalls sounds that she’s heard.
        she sees her mom at her bedroom door
        jumps out of bed and onto the floor, runs to you and hugs you tight
        as you ask if ” everything is alright ”
        with a smile she says ” yes ” and takes off her p.j.’s
        and starts to get dressed.
        she may not do it as others do , but she makes the attempt and follows through.
        yes ! she is different and GOD made her that way
        to bring you happiness from day to day.

        Liked by 2 people

      2. Such a wonderful poem about my McKinley 🙂 … You are far too kind, thank you.. I have printed this to share with my family.. This poem is so well written and it tells her little story perfectly, love it!! I appreciate this!! Blessing to you!!

        Liked by 1 person

    1. Of course I will pray for your sweet granddaughter Mercedes. 🙏 ❤️ bless your family and hang in there she has a grandfather who loves her and that’s one of the greatest things.. take care and I’ll be praying.

      Like

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