The past 2 years have been really challenging since my children were diagnosed with Autism. There have been moments of darkness, fear, anger, bitterness, hopelessness, and pure exhaustion both mentally and physically. Those feelings and moments come and go, and then I am able to see the light at the end of the tunnel. I don’t know that everything in life happens for a reason, but I do know that each challenge or experience teaches me something, and that I have to continue to search for that light.
This moment: I was just giving my son a bath when I went to go check on his sisters. I got to the top of the stairs and saw the two of them engaging with each other and sharing a sweet moment, which have been very rare in the past 3 years 5 months since they were born. A beautiful moment after a therapy session that high lighted so much of the progress happening with these two. I sat at the top of the stairs and reflected on our journey as a family and felt peace. I cherish those moments.
I came across this poem and wanted to share.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Emily Perl Kingsley.
What to do when it’s all wet outside and all the girls want to do is eat leaves? set up a teepee! I bought these scarves for S+J hoping it would soak up some of the drool. They are in this stage right now…well actually have been for a long time…where they chew on absolutely everything and explore everything with their mouthes. So fashionable and functional!
While Sophia + Jule napped John and I got some easter eggs painted. I love Easter! I’m making a fun sensory easter activity for Sophia & Jule so we can get nice a messy!
The first time John and Maggie met! Love at first sight.
Happy 1st Birthday to the most amazingly affectionate and loving dog!
You have been a blessing to our family and I thank you so much for all the times you kiss john’s face and cleaned off his tears when he is sad or hurt, all of the times you lay close by Sophia + Jule when they are upset (even though sometimes you make it worse, ha!), thank you for all the times you come up and snuggle with me when I am feeling defeated and alone, thank you for keeping me company on the days the kids are with their Dad and the house is so quiet and empty, thank you for climbing up into bed with me early morning in stealth mode and snuggling right up to my face taking that last little bit of pillow. You are everything I hoped for in a dog! Looking forward to many more years with you in our family (so lay off the grapes, will ya!?) xoxoxo
The first time John and Maggie met! Love at first sight.
Bringing Maggie home.
Maggie and John have such an amazing bond. When John was sick last week this was how I found them.
and then once he was better!
Each and every birthday I’m reminded at how fast time is going by and it seems each year is going by faster than the last. Slow down!
Sophia + Jule turned 3 years old. We had a party! I hope they knew the day was a celebration for them. They really loved the balloons and Sophia seemed to enjoy opening gifts, but Jule was a bit overwhelmed by the whole day and preferred to hide behind the couch, ha! Life on the spectrum! When it came time for cake, Sophia dove right into her piece of cake making the biggest mess I’ve ever seen! Great sensory fun with mushing the cake and icing between her hands. Jule was hilarious! She grabbed her cake, took one bite of icing, and through it over her shoulder. I didn’t get it on camera unfortunately, but my brother got it on video. I also wish I got a shot of the aftermath underneath the table. It was massive and took 3 people about 10 minutes to clean it up. haha!
There is always a lot of talk about genetics and autism. “What causes autism?”, the big question on a lot of people’s minds. They are doing a lot of research to figure out what causes autism and what the genetic make up looks like. Sophia + Jule’s pediatrician referred them to the genetics lab at Alberta Children’s Hospital (ACH), and I just got the results back a few days ago. They were testing for CGH array, fragile X, Angelman and Rett syndrome as well as some routine biochemical screening. The results came back normal, and so all of the above were ruled out. The reason for screening them was they are similar to Autism characteristics and sometimes can be misdiagnosed as Autism. There are genetic tests available for the above syndromes/disabilities, unlike autism. It feels good to have them ruled out and know that we are dealing with Autism, and not another disability.
The genetics specialist at ACH told me that there are other tests that can be done, they are more in-depth, cost a lot more, and Alberta Health does not cover them because they view them as “research”. But, there is a research study going on currently trying to figure out the genetic link of Autism between siblings. So he told me he’s talked to the research team in Edmonton and they would like to include Sophia + Jule in on the study, and possibly John (we are just waiting for him to be referred by the pediatrician). I told him I’m all for it. All the girls have to do is provide blood samples. No further involvement from them, and we would just wait for the results to come back, they would share the results with us, and they would share the results with the research team and hopefully it would help figure out what the genetic link is between siblings.
The study being done is being lead by Dr. Stephen Scherer in Toronto. Here is a recent article about the study.
For me, it seems pretty clear that genetics plays a big role in Autism. All 3 of my children have autism. Their family history includes schizophrenia on the paternal side with their Great Grandfather having been institutionalized in his early 30’s, and ADHD on maternal side. Even though both schizophrenia and ADHD are completely different diagnosis, they have also found genetic links to Autism. Just check out these articles here and here.
I’ve always been curious and like to ask questions. I love doing research as well. My Mom always called me “April O’Neil” (the news reporter on my favorite childhood cartoon, Teenage Mutant Ninja Turtles) because I was such a reporter. That hasn’t changed. I’ve always wondered about my children’s Great Grandfather and the story about him. So I found some people who grew up in the same small town in Southern Alberta as my children’s Great Grandfather and asked a 92 year old resident what they remembered about my children’s Great Grandfather. She told me he was clever with electronics and he made his folks a big radio with music and all, and in those days that was a treat. She also mentioned that he had two other brothers who both had “similar issues” and she believes were also institutionalized at some point. I’ve tried to find out more information, but because I am not related directly to them, I can’t have access to any records etc.
I know that it doesn’t matter where my children’s Autism comes from. I know it’s not going to change anything. They are who they are. But my natural curiosity would love to find out. I love science and family history. I think it’s fascinating, and so helping with any research towards finding out more about Autism is something I’m all for. Will I accept my children more if we find out “why”…no. I accept them now. I love them now. I love them no matter what.
The other reason I think I’m so interested in finding out more is because I’ve had people either out right blame me for my children’s Autism, or insinuate that maybe I wasn’t spending enough time with them and so they are just slower learners. I can’t tell you how hurtful that is. Yes, having 3 children so close together is overwhelming, having a toddler who’s 16 months old and then twin newborns would overwhelm anyone. Especially when your marriage is failing and you are home alone 95% of the time. But I’m here to say that if you feel that’s what causes my children to be the way they are…you need to educate yourself.
When I was first faced with all the questions, like “Do you spend a lot of time reading to them?”, “maybe they watch too much TV?”, I was insulted and hurt. I spent a lot of time with my children. I am a stay at home Mom and even though it’s overwhelming, I enjoyed playing with my children. John has always been more social and wanting to play. Sophia + Jule were really difficult to play with, and still are. I get on the floor and play with them, only to have them turn their back to me and continue to spin the wheels on a car or part of a toy. It is next to impossible to interact with them, and it’s been this way since birth. You really have to work HARD to get their attention and to hold it. It wasn’t as obvious until they were more mobile, so around 9-10 months when they started to sit up and could move themselves away from me. They have improved, and are getting more an more social every day with all the therapy and work we’ve been doing, but we still have a long way to go before they would be anywhere near considered “typical”.
Dealing with the diagnosis of Autism is extremely hard. It changes your life completely. Having to deal with all the questions and finger pointing was a lot to handle. I felt like I was alone, I was the only parent out there who was dealing with the finger pointing and blame that I was the one who caused their Autism. Unfortunately, once I got to meet other parents in similar shoes as mine…I found out I certainly wasn’t alone, and that far too many parents out there are dealing with the same finger pointing and blame. How horrible is that? When you are facing Autism, the last thing a parent needs is blame, you need love and support. You need those around you to educate themselves.
I believe that family members have a harder time accepting the diagnosis as being genetic because they take it personally. “It’s not genetic! There is nothing wrong with my genes!”. Please don’t take it as a personal attack. It is not. We live in a world where mental illness has such a stigma and it seems no one wants to talk about it. People don’t like labels – depression, autism, ADHD, Bipolar, etc. But those labels can bring help and understanding. This is not a personal attack on you, so please don’t make it a personal attack on us.
John’s preschool class has this stuffed puppy named Ruff. Each child takes turns taking him home and having him spend a few nights. He comes along with his journal and we are supposed to put in photos and a diary entry about his time with us. John is absolutely excited and showed me all the previous diary entries and told me what he did with each of his classmates who had Ruff. He can’t read, but he was right in every entry. John then said “Make Pizza with Ruff!!!” and so we did