Like many in our community, I have been trying to avoid sharing and offering more air time to a letter that has been circulating in the media and across the social networks reminding us that we still have so far to go. If you can stomach it, you can read the letter here. I originally dismissed this letter as the work of an internet troll. I was shocked to realize that it was legitimate and was being investigated by the police in that area. I don't know why I was so surprised that this letter was real. If you scan any number of news networks you'll find hate drives most of the stories behind them. I am having a hard time articulating how disgusted I am. I know one thing, though. I know for sure that the person that wrote that letter suffers more than any of us. Hate is too great a burden to bear. It injures the hater more than it injures the hated. Coretta Scott King I just want to say that I hope with all my heart that this person is prosecuted to the full extent of the law for their hate crime. They will be fortunate if the courts decide their fate. The courts are bound to be fair and just. The rest of us are not. I am reminded of a favourite line in a favourite book: "There is nothing to be feared like the anger of a gentle person." They have angered so many gentle people. But, more than that, I hope the family that received this letter is reminded every day that they have the full support of their community locally and the autism community, too. I know they will. It's what we do.
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It was brought to my attention, by Kate's awesome autism support worker, that two little boys at Kate's daycare thought it was funny to tell her that her daddy was there to pick her up, because they thought it was funny to watch her get excited and run up the stairs and latch onto a man, not her dad. You see, Kate believes all men are 'daddies' and all women are 'mommies'. She is known for running to any 'mom' or 'dad' that walks in the door and latching onto a leg saying, "Hi, Mama" or "Hi, Dada." I am guilty of laughing at this. I found it cute. The moms and dads that she latches onto find it cute, too…..I think. The first problem is that now the kids think it is funny, based on my example, and they are picking on her. I don't know which boys and I don't want to know because it was not their fault. It was mine. The second problem is that this behaviour is dangerous. Although, I know, Kate would choose Alex or I over a stranger, I also know that she would have no problem going with a stranger if we were not there. Kate's daycare is phenomenal. I don't talk about them because I don't want people to know where Kate spends her days but let me tell you they are wonderful and they protect and love Kate. They quickly spoke to the boys about teasing Kate and informed me of what happened. Even so, I worry. I worry because Kate does not perceive danger the way other children might. I worry that if a child told Kate her daddy was there to get her, she might go looking for him. The daycare is secure. There are fences and multiple people watching the children at once but a parent worries. Do your children, autism or not, wander? Do they understand danger? Little 'B', as we'll call him, is this really cool little kid that burns around our neighbourhood on his little training wheel defying bike. He's that great little kid that weaves in and out of the neighbour's yards greeting everyone he sees. He is independent and he fears nothing. He's a rebel and I like him, a lot. Kate has noticed him, too. Kate loves everyone she meets. Autism manifests this way in Kate. She does not distinguish between people outside of her family. This is good and bad. She will greet and hug and 'chat' with anyone who will spend a moment with her. She will hug and kiss and follow (we are working on this) any soul she sees. Little 'B' is different. Kate watches him. Could Kate have her first crush? Kate stands back a little when 'B' comes into our yard. She jibber jabbers happily at him. He doesn't mind. He is that awesome kid that doesn't look at her funny. He doesn't drive away on his bike. He doesn't even look to me for help. He talks to her. He guesses what she might be saying and he answers. Kate's jibber jabber is extremely difficult to understand when she is excited. When she sees 'B' skid through a mud puddle on his bike, she is over the moon. She flaps and jumps and talks away at 'B'. Kate: (jibber jabber…..spwash (splash)….babble….) 'B' (to Kate): I can jump father than that, wanna see? Kate: (babble…I see, I see….jibber jabber) 'B': Ok, watch this. It is very possible that Kate is exciting about the trick jumps this little daredevil does on his bike. However, I like to think she has developed her first crush. When 'B' left our yard yesterday, Kate called out, clear as a bell: "Bye 'B'. Wuv ew. See ew Tamarro." I think it's love. Kate's kind of love. The 'you can do no wrong in my eyes' kind. 'B' just hit the jackpot and he doesn't even know it. Autism is a disorder that affects many areas of development but many of us would agree that the issues surrounding communication might be the cruelest of all. And, not for the reasons you might think. I don't care if Kate cannot recite her ABC's. I don't care if Kate says "I wuv ew" instead of "I love you", forever. I don't care if Kate excels academically or if she does not. I care that Kate struggles to communicate how she feels and what she needs and it ends up in frustrated tears every single day. I care that my frustration cannot begin to compare to hers. I know that my feelings about Kate's autism will NEVER be as important as Kate's feelings about herself, but for now, while Kate cannot communicate how she feels, I am trying to tell her story as authentically as I can. I fully understand that my perspective comes with all sorts of prior knowledge, experience and expectation that skews the reality of what Kate is going through, but for now, it is what we have. It is our experience to tell and I take issue with those who would determine that I should NOT tell Kate's story because I don't truly understand her condition and that only an adult with autism is capable of understanding her autism and her potential. Attitudes like this are what give the neurodiversity crowd a bad name. I DO believe that we MUST listen to adults on the spectrum in order to truly understand all the facets of autism. HOWEVER, a parent, whether they are on the spectrum or not, has an unrivalled connection with their child. They have EVERY RIGHT to discuss their child's autism at length. They have EVERY RIGHT to discuss their feelings regrading their child's autism at length. They have EVERY RIGHT to scream and cry. They have EVERY RIGHT to cheer and celebrate. I am getting increasingly frustrated with reading posts about how neurotpical parents have no real insight into autism. Our children are an extension of ourselves. We FEEL every second of struggle and pain that our children go through. We FEEL every triumph, too. Isn't it enough that the insurance companies, 'medical professionals' and schools do not allow parent's a voice in their child's treatment? Do you really want to silence us too? Neurodiversity is becoming an increasingly problematic philosophy to me and that is not the road I wished to travel when I began this journey. I'm sorry. I am sorry I forgot to call you back. I am sorry I don't call you anymore. I am sorry my head is sometimes too full to remember obligations that used to seem so important. I'm sorry I look distant and uninterested. I'm sorry if I turn down your kind offers to help. I am sorry if you feel left out. I am sorry my priorities shifted so rapidly and drastically that you are confused by the new me. I am not sorry that my priorities have shifted. I am not sorry that I eat, sleep and breathe autism. I am not sorry that I spend my free time researching ways to help my child. I am not sorry that my brain is full; because so many of the things filling my brain are wonderful. I am not sorry she chose us. I am not sorry her sister is learning patience, and empathy and a love that cannot be compared. I am not sorry that she has autism. I'm not sorry. Today we visited Alex's grandmother in her nursing home. We usually take the kids with us because the men and women there adore them. I mean, really adore them. They NEVER ask me passive aggressive questions about Kate's development. ( 'How old is she?" (read about how this can hurt here), "Is she potty-trained?" or "I can't understand a word she is saying?") They only ever smile ear to ear and take Kate's violent hug attacks like pros. They say things like, "Your girls are beautiful" and "I could watch them play all day." They never glare, or judge or look uncomfortable when Kate flaps or jumps or screams. They don't care that she has autism. They don't even notice. They just see Kate. Sweet baby Kate, as we call her. Kate greets every single person she sees with a smile and a hug if she is allowed. The nursing home is no different. She reaches for their hand and puts one foot on their wheelchair as if asking to get up and go for a ride. I usually discourage this, but I can see the seniors are disappointed that I put a stop to their fun. Kate jibber jabbers happily at them and I can usually pick out a word here and there. Today, Kate had a long conversation with "Lillian" about a butterfly. Butterfly, was the only word I could make out but that didn't stop Lillian from listening intently and talking to Kate without looking at me for help. Grace sits back, more tentative than her sister, but she enjoys meeting these lovely people, too. It is a nice escape from the world outside. I hate tearing the girls away from such an accepting environment but we had errands to run. On the way out we ran into someone that worked at the nursing home. Kate began to babble at her and I am pretty sure Kate said, "I come with you?" to the girl wearing the balloons on her scrubs. Kate was fascinated by these balloons. The Balloon Girl looked confused and asked: "How old is she?" and I thought….here we go. "She's three." I said. Kate, as if on cue, pulled up her shirt to show The Balloon Girl her belly and exposed her diaper. "Is she potty-trained?" and we're back... You know how when something is bothering you it seems to pop up everywhere? For example, if you were worried you were pregnant with unplanned # 3 you might see pregnant people at every turn. (This is not my worry). My thoughts now are on potty-training. I know Kate isn't ready. We have a team of therapists helping us with some of things that top our list of concerns right now. I hope you understand that we do not put pressure on Kate to complete any of these tasks. We just have priorities that we hope are in her best interest. These are things we hope will make life easier for Kate. If I was to write out our list of wishes it might look something like this: 1. Social skills and help making and playing with friends. 2. Communication and help relaying how she feels, if she needs help or if something is wrong. 3. Potty-training. 4. Getting her to wear a ponytail in her hair (don't judge, it is important to me and it would help her stop chewing her hair) Things that are on the 'don't waste her precious time' list are: 1. Any kind of rote learning of numbers or letters etc. 2. Any kind of discouragement of stimming, like flapping, jumping or spinning. 3. Any attempt at 'extinguishing' a behaviour that may have a valid reason for occurring. 4. Any attempt at changing the core of what she is, autism or not. So, you can see that potty-training does not even top our list. We don't have unrealistic expectations for Kate in terms of potty-training. We, of course, want this for her but we are not willing to push her one minute before her team thinks she is ready. Lately, though, it just seems that every Facebook status I read is a celebration of potty-trained 18 month old. When I take Kate into the washroom at a restaurant or the mall I see tiny little children using the stalls as I hoist our girl up to the changing station. She is tall and her feet hang off of the table at her knees. She doesn't mind one bit, though. Just so you know. She doesn't notice those other children or care what they are up to in the stalls. That is my malfunction. Kate smiles and jibber jabbers at them and could not be happier to be out and about with her family. At three years old, Kate may be late to not be started potty-training yet but she wouldn't be considered abnormal (yet). I know some children/adults will never be potty-trained and I know our problems are minor in comparison. She does get the odd stare for barely fitting on the change station but for the most part it is still a socially acceptable age to be wearing a diaper. My fears exist in the future and they may be unfounded. I am happy for you and your potty-trained 6 month old. But, do you really have to fill up my feed with that crap? #kiddingnotkidding As usual we are getting ready for our summer trip to Boston. Last year, Alex and I went to New York instead. It's not the same. It's not Boston. You understand. So, here we are with Red Sox tickets and Duck Boat plans and reservations at the nicest hotel we could find and I can't help but feel awful. We do this trip once or even twice a year and sometimes we go alone and sometimes we bring Grace. We haven't brought Kate, yet. The last few years we were able to justify that because she was so young. This year we justify it with things like, "she wouldn't enjoy all the changes to her routine" or "she couldn't sit for a 9 inning game" or "what if she gets upset on the train?" We have many legitimate reasons for not bringing her. We remind ourselves that she she will be happier staying home with Grama. The truth is, there are bits and pieces of this trip that Kate would enjoy. She would love swimming in the hotel pool. She would adore visiting the aquarium (provided it wasn't too busy). She could happily spend hours running around the Commons. When I think of doing these things without her I feel terrible. I quickly remind myself that waiting for the train could easily set her off or that the crowds in Quincy Market would overwhelm her. I think of how confused she would be at bedtime. I think of how the different foods on everyone's plates at restaurants might upset her. Vacation is, by its very nature, not autism-friendly. It is new sights and smells and experiences. It is a change in every routine. It is a test for any child with autism. I know we are making the right decision but I still feel awful. It hugely sucks that Kate cannot be included in this summer vacation. We are taking the girls back to Disney World for New Year's Eve and we know, from experience, that this will be a trip that will take a great deal of planning and accommodation. I guess we are saving up Kate's energy and our own for our Disney adventure. We will have fun in Boston and we will shower Grace with some much needed attention but we will all wish Kate was with us. We will, of course, buy her a very special, overpriced, stuffed animal from the aquarium to make her smile. When we lost our therapy kitty, Monty, we were devastated. Kate still wanders around the house asking, "You help me find cat, pwease?" It breaks our hearts. Our girls adored that cat and our house feels wrong without him. I firmly believe children should have pets. Pets teach children the boring things like responsibility but they also help children make connections and best of all they communicate without words just like so many of our children with autism. Eventually, when we are ready we will introduce another cat into our home. It seems impossible to believe he could be as cool as Monty; see video evidence of his coolness here, but we will give another kitty a chance. 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April 2022
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