What are the odds? For Miscarriage it’s one in four, Infertility was one in eight, having a biological child was one in a billion for me, Autism one in fifty-five, but today our odds are one in thirty-three. Out of thirty-three kiddos that have a sibling with autism, one kid will fall into the same diagnoses. Mackenzie is that One.
““Multiplex” refers to families in which multiple individuals are affected by a specific disease or diagnosis, while “simplex” refers to families in which only a single individual has a specific disease/diagnosis.”
A lot of friends and family kept hope for Kenzie. This is no surprise, we’ve been praying for hope since before she was created (hence her middle name, Hope).. loved ones held on to the idea maybe she was just copying her big brother’s signs of autism, that maybe she wouldn’t have it too. As nice as that outcome would be it’s just not our reality. I noticed signs for a while, some signs slipped passed me just being so used to her little quirks.
I have learned through research and friends in the autism community that girls are harder to diagnose. Girls have the tendency to mask a lot of symptoms versus boys. They can blend in better and often it’s old school thinking that only boys can have autism Mackenzie was quite different, she showed a lot more signs and symptoms than Jack did. We have been very fortunate to have an evaluation team that was on top of everything to make sure our little girl could get the help she needs. It’s different for everyone. Girls, boys, siblings, your cousin’s neighbors kid etc…
Mackenzie displayed a ton of symptoms of autism. She stims A LOT. Stimming in her case is, hand flapping, spinning/twirling (at inappropriate times/trying to hype herself) banging her head against things, tapping her fingers.. Fixated on animals, She has a hard time playing with other kids/socially (this last year of crazy didn’t help her lack of socialization) She also makes grunting noises, has a 0 to 100 meltdown if she doesn’t get what she wants or if it doesn’t happen right away. Walks on tiptoes. Kenzie hates wearing clothes, if a single drop of water touches her clothes she will strip. 98% she is naked at home. Finger/nail biting…More alarming symptoms are genitalia stimming and she wraps things around her neck/self harms. Mackenzie sometimes prefers the lights off while playing.. minimal eye contact, attachment to weird things (tooth brush/hair brush/stick/poles/brooms/rakes) Laughs at pain, she can’t understand if she has hurt someone or if they are sad. Lack of fear/danger and Speech Delay..
Of all of those things, Jack and Kenzie only share speech delay, lack of fear, and eye contact.
Kenzie has been in Speech therapy since November 2020. She is slowly making progress but not as much as we hoped. The pediatrician also submitted a request for a Hearing Test. It’s standard when looking into delays and diagnosis, doctors want to rule out and fluid in the ears and deafness. She passed and avoided the dreaded ABR sedated hearing test that Jack had to go through.
What’s next?
Once we received Kenzie’s signed report/diagnosis we send it to her pediatrician, therapist, insurance and apply for DDD. We then will set up ABA therapy services (just like Jack) it’s more than likely they will have to do an intake appt (ask about history) then In Home evaluations, report of how much help she needs and insurance approves and on to the waitlist she will go. I am also looking into her being evaluated for Occupational Therapy. I see delays and want to be on top of everything. This is certainly going to make or calendar even more packed but early intervention is so important so we roll with it.
My kids will have a harder life. The basic milestones will be a long dragged out checklist. But they will conquer every goal and continue to make their mama so proud. Their future terrifies me, the idea of them juggling all these neurological challenges and then add puberty/hormones. A lot of autistic kids go into a dark place like self harm, trying to hurt other people or animals, and suicidal tendencies. It’s really important to show your love and support from day one to these little people. Their issues won’t just disappear, they easily could be worse. They will grow up and still have Autism. People often forget that it’s not going away, now is the time to help them regulate their emotions and reactions. So that when they are older they can land on their feet and change the world with their amazing minds!
Mackenzie, You are my firecracker. Nothing has changed since receiving a piece a paper. You’re laugh is contagious and your wild spirit keeps me young (and crazy) I have a good feeling you’ll be my most difficult child to raise, probably because I see a lot on myself in your NOT blue eyes… (still sensitive about that genetic battle loss against your Dad) But I have no doubt in my mind you will shine bright and accomplish so many things.
I love you. Always.
