Things do not change; we change. Henry David Thoreau.
Grace has recently graduated preschool. We are so proud of her. If you follow our story then you know how painfully shy and full of anxiety she can be at times. The 'photo shoot' below tells a different story. She is growing up and she is moving on and we have some seriously mixed feelings about this.
It is particularly difficult as Kate was also due to make a transition but we have decided with her daycare that because she is not potty-trained and she is behind her peers that she will stay with the little ones in the two year old room for a little while longer. I know this is the right thing to do. I know her daycare will move her as soon as she is ready.
Grace has moved on to a different daycare because of her age. She will be starting school in the Fall and she needs to be with her peers. Part of me wanted her to stay in the daycare with Kate. I took comfort in knowing that she was there with Kate. She understands her sister. She can translate for her; and I don't just mean in terms of speech. She gets Kate. Kate needs her in a way I can't describe.
Alex and I are usually very good at celebrating different milestones with Kate. We don't often compare her to other children. She is making excellent progress. We still can't help but wish her sister was there to help her along during the day.
We know that it is very important for Grace to go on to school and be independent. There is more than enough responsibility on Grace's little shoulders. Kate will gain a little more independence too. I know Kate misses her sister even though she can't express it. Grace misses her too. They are so excited to see each other at the end of the day. Below is their daily car conversation when they see each other at the end of the day. It rings true.
Grace: You ok, Kate?
Kate: I ok, Gacey.
“Some changes look negative on the surface but you will soon realize that space is being created in your life for something new to emerge.”
― Eckhart Tolle
I have officially unloaded all 100 tickets. Thank you to all of our sponsors for this event. We have raised more than we need and have tucked the excess away for our next event. This event is FREE with your ticket. Please bring it with you the morning of. The refreshments will be offered at a discount price.
Remember, the lights will be raised a little, the sound will be lowered a little and MOST IMPORTANTLY the children will be free to move and make noise or stim as needed. Everyone in the theatre is there to support children with sensory issues. There will be no staring or shushing. See you Saturday July 6th at 10:00am at Empire Studio 10!
If you did not receive a ticket and would like an opportunity to go to a sensory-friendly screening, please contact Empire Theatres at:
175 McAllister Dr St John, NB E2J 2S6 (506) 632-4200
77 Marr Rd Quispamsis, NB E2E 4Z4 (506) 848-1170
and ask them to offer sensory-friendly screenings in their regular schedule.
(Or contact your local theatre)
We need autism to be a part of the collective conscience. We need people dialoging all the time about autism. Those of us directly involved do that anyway. We need the others; the elusive and rare untouched among us to start talking. And you know what? When we fight within the community and get hung up on the semantics of it all; we scare them away.
I don't wish to diminish a person's right to be called 'autistic' or a 'person with autism' or a "free lovin' hippie" for that matter. You can choose your moniker in my view and you can relax when someone else chooses theirs. People can be afraid to talk about autism because they are afraid to offend someone. For the sake of the conversation could you allow these differences to live together for now? The divide within the community works against us. This isn't news, right?
I understand the power of language. I understand that words and phrases change meaning. I also understand that when you make the conversation controversial people will decide to stay out of it. They don't feel prepared to talk about it. They've heard or seen someone crucified for forgetting to use person-first language or they're timid to enter the conversation.
Now, I am the first one to call out someone for saying something rude or insensitive (on this blog anyway, because I am too chicken to do that in person) but I feel that we are placing this topic so far out of of reach of the average person when we assign strict and ridged rules to the discussion.
If someone is being kind when they approach the topic then they are doing it right in my book.
Our little sensory-seeker turns into a sensory-defender sometimes.
A little knowledge is a dangerous thing, but a little want of knowledge is also a dangerous thing.
Below are examples of why this quote rings true for autism advocacy. I swear, I heard everyone of these with my own ears.
(I don't expect you to get a PhD in all things autism, but for the love of Buddha read a damn article or something. If you work with these kids or you know one (and you all do) you owe it to them to get educated about what it is like for them.)
(For the sake of symmetry I added ten things to each list, HOWEVER, I have heard many more nice things than bad. The bad does standout sometimes, though.)
Things that made me go hmmm??
1. Autistic kids just need more hugs. They love to be squished. (Kate seeks pressure, but come on!)
2. Autistic kids are really good at puzzles.
3. If you feed them dairy they'll become more autistic.
4. I heard you can cure it...if you stop feeding them carbs.
5. What can she do? Like, what is her special thing?
6. At least she can talk.
7. She doesn't look autistic.
8. Did you know Jenny McCarthy cured her son?
9. She looks normal to me?
10. Have you heard of Temple Grandin? Carly Fleishman? 'The Spark'? The guy who can draw an entire city from memory? ((All facinating people and I adore the stories but I do get these comments twice weekly :))
Things that made me sad:
1. Oh my God, I am so sorry. I know a woman whose kid still can't talk and he is like 22.
2. I heard Autism is caused by pregnant women breathing in exhaust from cars/eating feta cheese/feeling guilty about not breastfeeding etc. (There are too many of these to count)
3. Did you do anything strange when you were pregnant?
4. Will she always have it? Can they fix her?
5. I hope you still discipline her. Give me two weeks with her.
6. That is so overdiagnosed, it's ridiculous.
7. Really, 'cause Grace is so smart?
8. It's not called Autism, it's called mentally retarded. (<----Oh Yes, she did!)
9. Did you vacinate her?
10. I'm so sick of hearing this. I am autism'ed out.
Things that made me happy:
1. What can I do to help?
2. Is there something I can read that will help me understand? (Best response ever!)
3. Everything is going to be ok.
4. What does that mean?
5. How is Grace?
6. Kate is still the same Kate you walked in that office with.
7. Can you help me understand what that means for Kate?
8. Let's talk or not talk, but either way let's drink.
9. I think I love her more, if that's possible.
10. Holy shit, really? Well, let's do this.
Do you have a school-aged child? Do they celebrate their birthdays or enjoy playdates on the weekend?
Birthday Parties: Invite every kid in your child's age group/class*, if posssible, including children with special needs. If you are unsure you should ask the child's parents what accommodations, if any, might have to be made. Likely, the parent will be so moved by the invitation (as they can sometimes be rare) they will be speechless for a moment. Don't pat yourself on the back, you haven't done a great thing, you've done a human thing. INCLUDE ALL CHLDREN. Doesn't that seem painfully simple. Why am I even typing this?
The parent, depending on the level of disability or the type of condition their child has, will likely attend the party as well and you will have another parent there to help. It's a win/win. It is YOUR JOB to make sure your children understand the diversity in their classroom and to ensure that there is no fear, but instead understanding, of a child with a condition or a diagnosis.
Here is a lesson in empathy for you: Imagine picking up your child from daycare/school everyday and never pulling that elusive birthday party inviation from their cubby/backpack. I know this is about the kids and not so much the parents, but that parent is crushed for their child. I have had multiple conversations with parents whose children are about to leave elementary school and have yet to receive their first birthday party invitation from a classmate. To me that is nothing less than criminal. If you are filling out the invitation with any measure of pity or obligation in your heart, skip it, we can wait until you truly want your child to experience all different kinds of friends.
*If the group it too large you can invite all boys or all girls.
Playdates: I know this one can seem more daunting if you are the parent of neurotypical children and you are unsure of what to expect from a child with special needs. Here's a tip: ASK! After you have taken the time to ask you may find that you know more about the child's particular condition or diagnosis than you might think. You will be able to explain it to your child and with some very simple modifications you can usually set up a very successful playdate.
I know from experience that children with autism struggle to socialize and their parents are often encouraged by professionals to include them in as many social groups/situations as possible to help build on their skills. This is easier said than done, when classmates and their parents are too fearful to ask questions or include a child that might seem a little different than their own. Again, the parent will likely stay and you'll see how quickly children can adapt. Remember, this is not your pay it forward moment for the week. This is a choice to see a child as a child and not a diagnosis to be feared and avoided.
Sometimes we are overwhelmed with how crucial Kate's early years are to her development. If you work with children like Kate I hope you understand how very integral you are to their future. Please take it seriously. I know many of you do because Kate has an amazing team. I also know the opposite is true sometimes. I wish you were paid more. I wish you were respected more. I know you are worth more. Don't let her down.
Kate : I need dadda's hug.
Me: He's in the shower Kate. You have to wait.
Kate (heads to the bathroom and opens the door and looks at Alex): "You swimmin' dad?
Grace: Oh Mom! I forgot about the word GALAXY!
Me: What do you mean Grace?
Grace: I just forgot about it and I love it so much!
I guess I will be counting the 'unlikes' and the unfollows' after this one:
I often receive emails and comments offering prayer for Kate and our family. I usually respond with things like, "thank you for the kind words" or "we appreciate your thoughts." The truth is I am agnostic bordering on atheist and I always cringe a little at my phoney reply. It is not that I do not appreciate the positivity and the kindness; it is just that I hate pretending to be something I am not. I feel like anger towards people who reject religion might be the last socially acceptable predjudice. I am not here to debate the existence of God. I will leave that to @Godlessspellchecker. (Before you check him out I must warn you that you may experience a level of cognitive dissonance you are not ready for.) I just wanted to be real with the readers of this blog.
My grandparents were very involved in the Catholic Church. I attended Catechism. I took my first (and last) communion. I understand that world. I just don't live there anymore.
Our home is not without spirituality as the Buddha statues on my mantle with tell you. I enjoy reading about all of the great leaders and philosophers. I will encourage my girls to do the same.
I guess I am basically finally admitting that I don't need you to, 'pray away the autism'…we are good, thanks.
"You want rums Mama?" Kate's eyes stare at me in anticipation because even though it sounds like she is offering me much needed alcohol, she is actually asking if she can play the drums. Kate hasn't figured out pronouns yet so she often offers you the very thing she wants to do, which can get hairy when we are talking about two preschoolers.
We are downstairs in our neighbour's basement. The rest of the crew are upstairs enjoying a bbq. Kate has led me down downstairs with the threat of a meltdown I didn't want to face today. She had been down before and she remembers there are instruments for the game rock band in the basement. She remembers the drums.
Kate picks up the drumsticks and smashes them together with a "One, Two, Three, Four!" and begins to beat on the drums. Huh? What? Where did she get that? I listen a little more closely. Does she have rhythm? I can't be sure because I sure as hell don't have any. I listen again. Wait a minute…..I think she might. I look around for a witness. Damn everybody else is upstairs. Kate's attention span is pretty non-existent so I know this is it. I left my phone in the wagon. Shit.
Fast forward to her first day of music lessons the following week. Kate flitters from instrument to instrument in total Kate style. She never focuses long enough for someone to distinguish whether she gets the idea of the instrument or not. I, of course, urge her to the piano. She, of course, wants the guitar. I have my camera ready because as much as I sometimes criricize the media's obsession with all the feel good stories about the fewer than 1% with savant capabilities, I suspect Kate has some hidden musical talent that will blow us all away.
As I watched her struggle to focus on her teacher's instructions and come back constantly for the squeezes she needed to get through her session, I realized that Kate's super talent is the amount of self-regulation it took her to meet our expectations that day. Being in that strange room with a new person and being surrounded by so much of the unknown would present to Kate as a monumental task. She nailed it with only minor issues. That is totally enough for me.
The lesson went 'well', relatively speaking. Her teacher sang to her and sweetly ignored Kate as she screamed, "Stop Singing!"
We can't wait for next week.
As you may have seen on FB, Kate is currently looking for a lead singer for her band, "The My Little Pony Project." Apply below.
If you follow us on Facebook (and I hope you do) then you will have no doubt noticed that Grace surprised us all and sailed through Kindergarten Orientation Day. I didn't sleep the night previous because I have seen how her anxiety gets in her way sometimes. She struggles to particpate in activities and she spends more time worrying about her sister than any child should. I don't have to tell the regular readers of this blog how unbelievable proud we are of Grace on any given day. I do however, have to tell her that. So, I made her a little slideshow below.
First though, I wanted to give you some history on our Grace. I find this, in many ways, harder to talk about than Kate's autism. Grace was born on April 12, 2008, three weeks early at a whopping 9.8lbs. When the nurse placed her in my arms she delicately announced to me that Grace had been born with extra fingers, a condition called polydactly. (This is NOT the hard part, in fact we loved those little fingers.) I was shocked and confused but I still had this amazing baby in my arms. It would be fine. At least I had the luxury of her condition being described to me by a nurse in those first few moments. Alex was left to figure out for himself what was going on. It kind of makes me giggle when I imagine how many times he must have counted and re-counted her fingers in those first few minutes of looking at her. Funnier still was days later when my friend K was holding her and the little protective mitt slipped off (we hid her condition at first). K thought she had broken Grace's finger as her extra digits had no bones and hung from her hand at an awkward angle. K even laughs at this now. For the very curious of you I have posted a couple of photos. Grace had those little fingers removed with surgery at ten months old. They couldn't simply be tied off because there were nerves in them. They had to be removed surgically and the nerves were tied off back inside her hands. She has tiny scars. We had her hands cast before the surgery so we could show her when she was older. I will admit I was originally very upset at this turn of events, especially when her discharge papers from the hospital called her disfigured but I have since learned that it was merely a cosmetic thing and who cares about the cosmetic things. Her surgeon told us she could have been the fastest piano player in the west if we had of decided to keep them. :)
The next thing we went through happened just before Kate was born. It is the hard part. I will say this quick. Grace has had many bouts with pneumonia due to her asthma and during one of these x-rays the doctor saw Grace's heart was enlarged. I googled it. Then I cried. Don't google it. Google doesn't provide accurate information. They also found a heart murmur. We set up an echo which was done days after Kate was born (in fact it was done the same day Kate received a positive test for hypothroidism (which later turned out to be a false postiive). Anyway, thankfully the echo showed no major issues and we monitor Grace through the help of her paediatrician. She tires much more quickly than most kids her age and her asthma often slows her down but otherwise she is a typical kid. I still worry. I constantly worry. Do we ever get to stop worrying? I told you I don't like to talk about this.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)