Me and my M

A lot of people tell me that they haven’t seen me in what feels like forever. I get invitations to lots of places that I seldom get to accept and quite a few people seem to take my absence quite personally. I am truly flattered when persons let me know that my presence is wanted in their lives, and I promise you that every time I’m invited somewhere I (almost always) make a genuine effort to attend. But…you see…the way my life is set up….

Being the parent of a special needs child can be all consuming. Every time that I’m not at home, that means that M is in someone else’s care. Right? Right!. They say it takes a village to raise a child, but when your child has autism that village can be reeeaaaaally small. While some persons may have grandparents, aunties, uncles and friends to fall back on when it comes to babysitting services my options are pretty limited.

When you’re the parent of a non-verbal child there’s a different level of security that is activated in your mind. I can’t just ask “how was your day” and get a full run-down of what happened, be it good or bad. M can’t tell me if someone did something wrong, if she felt sad about something, if she doesn’t like it somewhere. All I have to go on is what I read from her behavior and interactions with me and those around her. Even when there are friends and family that are willing and could probably take care of M most days, I’m always aware that they are really not equipped to handle her if she’s having a bad day, or worse yet, a full on meltdown, and that’s just a risk that I’m in no way willing to take.

There are very few people that I can leave my child with and have my mind be at ease that she’s comfortable and with someone who would know how to handle anything that comes up. VERY. FEW. I mean, like less than a handful. That’s a reality for me. And those very few people have their own lives that do not revolve around my schedule, or that of my child.

Even when it comes to professional matters, I’ve had friends and associates who have offered me full-time jobs at establishments because they know that I work from home. I know all too well that they mean it with the greatest intentions and I always accept it with the appreciation that these people have my back, but my working from home is a matter of necessity, not just because I don’t FEEL like working for someone else (I mean I definitely don’t feel like working for other people, but that’s not the deciding factor here).

When I started my businesses it wasn’t because of a budding entrepreneurial dream like for most people, it was because I knew that I simply could not work for someone’s company and adequately take care of M the way she needed me to; the way I needed to be there for her. When I left my job in January 2017, I was actively applying to new places when I had the realization that there was a very slim chance of me being hired by any of these companies after I explained my situation to them. Even if the person did choose to give me a chance I knew it likely would not last long and I would just end up going from job to job.

Who’s going to hire someone that says “Hey, ok yes I want this job. But you have to let me leave early on Tuesdays and Thursdays to take M to ABA. Oh and yes I’ll probably be in late on Thursday mornings as well because she has Speech that day. Oh and if her nursery/school calls and says she’s having a meltdown I gotta go. Also I can’t work during Christmas, Easter or Summer vacations cause she’ll be home from school. Great thanks so much!” Sounds like the perfect employee right? You see my point? So I quickly accepted that I needed to find a way to work for myself, where I could make my own hours and rearrange my schedule at the drop of a hat if need be; and that’s exactly what I did.

But when my friends ask me “why don’t you apply here?” I really don’t always feel like having to explain why it’s not something I’m interested in doing. I’m sure some of them think I’m being unnecessarily difficult, and I let them think so. A “regular to 9 to 5” just won’t fit into my M centered life, and even though I AM broke (I mean…phew), quite frankly there’s no amount of money I could be paid that would make me not choose my child first every single time. Imagine somebody telling me that I cannot stay home with my child today? Mek stabby laugh! No, that’s just not an option for me.

So let me start 2020 by saying I’m sorry in advance. I’m sorry that you don’t see me as often. I’m sorry that I can’t go on a girl’s trip to Monte Carlo, I’m sorry that I didn’t get the chance to take you out when you visited my country. I’m not going to apply for that position you recommended to me but you can definitely support me by sending people to patronize my businesses at Virtual Aide Barbados, Ideal Journey Concierge and Crop Over We Go (I will not apologize for this shameless plug because this is my damn blog!)

Now I’m in no way a recluse so please don’t feel like you have to feel sorry for me. I do get out some (mostly because work demands that I do), and when that happens I try to make the most of it, but those outings are usually the result of planning with advanced notice for adequate baby-sitting arrangements and you Bajans aren’t particularly good at not being last minute.

When I AM at home I’m in no way depressed as I quite enjoy my child’s company and I’m also really happy when I’m in my bed. My priorities just happen to be a lot different now, I promise you it’s nothing personal, and while I will always enjoy a good outing, it’s never going to be the way it used to be…and I’m absolutely fine with that.

So…definitely STILL invite me places ’cause I’m gonna be in my feelings if you don’t, but just be aware that there’s a high likelihood that I’m absolutely going to tell you no. That’s just the way it is.

This past Friday we celebrated M’s 4th birthday. FOUR ENTIRE YEARS! I still can’t believe it. Time really needs to chill out.

For some reason this particular birthday had me very deep in my feelings and I was posting her baby pics all day and just doting over how she used to be this tiny adorable person. In posting the more recent pics, someone reached out to ask if I didn’t feel a “way” about posting her in her pamper, because she is a “big girl”.

Now, I’m not going to lie, at first I was a bit annoyed. But I said to myself “self, this is just the ignorance coming through, don’t take it personally”. You see back in the day, this was the kind of thing you would be ashamed of. Once upon a time you would care what other people thought of your child, and would think that them knowing such a thing would reflect badly on you.

Well, let me tell you all right now…I do not care. My 4 year old toddler still wears pull ups sometimes, especially when she’s home at night, because she is not yet fully potty trained. That’s how these things go sometimes. I’m sure there are neuro-typical 4 year old kids that still haven’t mastered it fully. If someone wants to be embarrassed by that, that is entirely their burden to bear. But it will never be mine.

This mindset of shame, hiding and pretense is one of the main reasons I started writing this blog. It needs to change. Autism comes with many effects, and one of those effects is that M does not learn things the way a neuro-typical child will. It may take her a bit longer to get something. Some things she learns by practice, others we have to work a little harder to find ways that she’ll understand what we’re asking of her. Potty training, much like everything in life, is a work in progress, and however long it takes her to get it, I’m absolutely fine with. I won’t be pressuring her, and I won’t be allowing anyone else to do so either.

We can’t keep hindering our kids because we’re worried about people think. The time I would spend being embarrassed about what M can and cannot do is much better spent on me trying to figure out how to help her deal with everyday things. I choose to use that time time, and brain power, in a positive manner. I highly recommend that everyone do the same.

I’m going to make a more valiant effort this year to write consistently, and share more with you guys as we go through this experience. The more people are exposed to something, the easier it becomes for them to accept, relate to and empathize with the situation. As far as we’ve come a lot of people are still very conditioned to operate in out-dated ways of thinking. If I can help just a handful of you to think about things different I will feel like my job has been well done.

In all aspects of life there will be great times, good times, bad times. And there will be horrible times. Autism can come with a whole lot of bad, and sometimes even downright horrible experiences, especially at the start when you’re just having to make sense of everything.

Imagine as an adult, that you one day wake up in a strange and unfamiliar place. There are smells, noises and sights that are powerful and overwhelming to you and even though you’re surrounded by people none of them seem to be experiencing or understanding what you’re going through. Oh, and you cannot speak to explain any of it to them.

I have thought of that scenario and how terrified I would be entirely too many times. Because the reality is, that is pretty much what M experiences everyday. There are things that she doesn’t like to feel. There are noises that bother her that are completely insignificant to the rest of us. There are textures of food and flavors that are not the least bit acceptable to her. Sometimes all of her senses can become so overwhelmed by external stimuli that she can just have a complete meltdown. And she cannot explain any of these things to us. We essentially, as her parents had to figure it out with professional help, observation and by trial and error.

At the beginning it was SO hard. Meltdowns came often. We didn’t know how to stop them, we didn’t know what was bothering her, and you never knew what kind of day you were going to have. Some days she would be absolutely fine, her usual playful loving self, the next few days something would be off and she would be crying and fretful and we would know meltdowns would be right around the corner. I can tell you now, there really is no feeling more defeating than for something to be wrong with your child and you have absolutely no idea how to make it better.

We kept trying though. We kept taking her to her therapy sessions and teaching her basic skills. We kept asking her doctors and therapists questions about any and everything and we kept trying new things. If one suggestion didn’t work for her then we moved on to the next thing until we found something that did. Eventually she started to learn things quickly and we were able to start teaching her alternative methods of communication. She’s now quite the independent and headstrong personality and I’m enjoying watching her develop.

Sometimes I wonder if I would still be so appreciative of all her achievements if she was a neurotypical child. There are things that to the average parent/adult may seem somewhat insignificant or standard, but to me they are such massive deals. M’s Godmother calls those the “small/big wins”. Turning on and off the light, taking on and off her shoes by herself, letting us brush her teeth without someone having to restrain her, eating all of her lunch. These are all things that would be expected of a “normal” toddler her age. But none of those things came easy to her and yet here she is now doing them like a boss anyway. Everyday that I watch her achieve something new I am continually proud and excited.

Not only has it been a journey of learning for M but it has definitely been so for myself and her dad. We’ve started to figure out the things that bother her. We’ve been able to pick up on indicators that lead up to meltdowns and bad moods and made the necessary changes to accommodate her. We’ve learnt and amplified her strengths and have identified and supported her weaknesses. We’re now at a stage where the lows are fewer than the highs and I could not be more grateful for that.

Do I think that means that there aren’t more lows around the corner? Definitely not. Is every day flowers and sunshine? Hell no. But those lows only ever make me appreciate the highs so much more. I hope to keep celebrating the victories and pushing through the setbacks. With Autism those lows are really sucky, and frustrating, and exhausting; for all of us. But we really just have to take them as part of the journey. I never want to dwell in them; when they come I just put on my big girl panties, put my head down and push through. And if there’s one thing about those bad days, they make the good days so much sweeter.

Now I know that after my introductory blog the next foreseeable step should be for me to do a post about what Autism is and its signs. But you guys are reading this on Al Gore’s internet which means you are fully capable of googling that information for yourself. So I won’t bother to go through any unnecessary regurgitation. What I will do though, because I acknowledge that in this day and age we are really quite a lazy species, is post the following links so you don’t actually have to do the laborious research yourselves.

https://www.autism.org.uk/about/what-is.aspx http://nationalautismassociation.org/resources/signs-of-autism/

What I do want to talk about is the importance of early diagnosis, especially in a country like Barbados where therapy options can be limited. We got M’s official diagnosis when she was a year and a half but it was just before she was a year old that we started noticing signs.

M’s pediatrician raised concerns about her not responding to her name and had us do some tests to rule out that loss of hearing wasn’t the problem. I also had one of M’s aunties at her day care pull me aside one day to mention that she didn’t think she was hitting all of her milestones and that she thought it was worth getting checked out. Instead of these things giving me anxiety it was kind of a relief to know that I wasn’t being paranoid and that my concerns were justified.

What really stood out to me though, and what I want to address in this blog, is the hesitancy and caution that M’s auntie approached me with when she gave me that advice. She expected me to respond in a negative manner, to be offended that she would insinuate that my M was anything less than perfect. This was so much the case that when I later told her that I had shared her concerns with the pediatrician and that we had gotten her tested, and received the diagnosis, tears came to her eyes. And she wasn’t crying because M was autistic. She was crying because I had actually listened and I was actively working to get M help.

She explained to me how very often in her years of care-giving she had had to have similar conversations with other parents who responded to her with aggression and defensiveness, told her to mind her business and basically ignored what she had to say, at their child’s expense. M’s pediatrician would also tell me stories of parents whose child had not uttered a syllable at the age of 4 and yet had never even thought to get the child tested or who just flat out insisted that their child was fine.

Since M’s diagnosis has become public knowledge I’ve had persons reach out to me privately, telling me that they have concerns, but that their partner or family member keeps telling them that they’re overreacting. I’m sorry, but I really don’t care if anyone thinks I’m overreacting where my child is concerned. After months of not being able to sleep on my stomach, CONTINUOUS peeing, and 12 straight hours of the most unimaginable pain I have ever experienced, you can bet your ass that I would rather overreact and be wrong than to underreact and miss something important.

What could you as a parent possibly have to lose by getting your child checked out? If you get your kid tested and the person was right, then good, you caught it early and you’ve now made it possible for you to get your child all the help they need. If you get your kid tested and the person was wrong, then great, you have nothing to worry about. I mean, it’s pretty much a win win in my books.

I get it, thinking that you and your child could be facing a lifelong battle with autism is terrifying. And there are lots of people that just like to pretend that everything is okay. But that never works. That doesn’t just make the problem go away. There is no cure for autism so it’s not just going to stop.

M is proof that early diagnosis is a game changer. In just a year and a half she has made great strides in so many different ways. She makes eye contact, responds to her name, and interacts with adults and other kids now. Although she is still non-verbal there are sounds and intonations coming from her now that are music to my ears. She eats actual food now!!!! And she now lets me brush her teeth twice a day without having to be restrained or having any form of a meltdown. These things may seem insignificant but they REALLY aren’t if you knew where we started. And had I just pretended that everything was fine and done nothing, she most definitely would not be where she is today.

We owe it to our kids to give them a chance. We can’t doom them to fail without even trying, this world is tough enough as is. Trust me on this. If you have even the slightest concern about your child’s development, share it with a professional. Ask questions. Be your child’s advocate. If we don’t have their back, who will?