I received The Life We Never Expected, in exchange for honest review. The book was written by Andrew and Rachel Wilson.
I don't remember requesting the book, but I was glad when it arrived. I have two special needs children. My oldest has autism, adhd, and creatine deficiency disorder. My youngest has
- Autism
- Sensory processing disorder
- Creatine Deficiency Disorder
- Global development delays
- suspected long QT syndrome
- Static Encephalopathy (breath holding spells, which can cause seizures.)
- Sleep apnea (the Static and Sleep is why he has a heart monitor and pacemaker).
- X chromosome errors
Brad has regressed. He no longer says his name. If you ask him his name, instead of Brad, he says your name. His mental age dropped from 3-4 years to 0-6 months. Kalen functions at 24 months and has a mental age of 2-3 years. Kalen has progressed faster than Brad, thanks to God and early intervention. Kalen is more independent and wants to learn more things, while Brad requires more assistance and stagnant when it comes to learning new things.
Even though my boys are special needs, I do drop the ball at times. I have wanderers. Brad walked outside in his diaper, while I was sleep, but rang the doorbell to get back in. Kalen had a recent issue with wandering. I occassionally lose my temper. I am not the perfect mom. I do not have perfect kids, special needs or not. Nothing like getting a ball tossed at you or having to dodge a chair or table because a child is having a meltdown or a temper tantrum. I had to take a knife or two away because someone else besides me forgot to put the sharp objects up high. We have knives hidden everywhere in this house except the kitchen. When people need one, it's a challenge to find one and then put it back up. This is definitely not the life I was expecting. I never wanted kids, let alone wanted to take care of a kid for the rest of their lives.
I deal with constant obsessions with cheese (Kalen) and tv remotes ,even if the cable is not on (Brad). I deal with fear of water (Kalen) and screams because Brad likes to bath, but doesn't like soap or towels or loofahs, but both kids love bubbles. Brad also loves movies. I have bought multiple dvd players (which Brad broke) and lots of cheap movies. He loves men in black and a few elmo movies. I don't know which is worse: watching MIB over and over again (thank goodness, he wore out the DVD) or listening to people driving in cars videos on Youtube.
The book provides stories from people, going through the same thing I am. The authors have childlren with regressive autism. The book provides bible verses and how to apply the verse to raising a special needs child.
I liked the chapter on the orange. The authors said what if you are at dinner and think you are about to receive a gift of a chocolate orange from a friend, but when you open it up, it's a real orange. Nothing is wrong with the orange, but it is not what you are expecting. Everyone else at the table has received chocolate oranges, so you feel a bit disappointed and let down. You may feel isolated and alone because others got something which you did not (I do have a lonely, isolated life).
I admit I do not want to change Brad's diapers for the rest of his life. I don't want to deal with broken windows and holes in the walls. I don't want to worry about what will trigger a breath holding spell or a seizure from Kalen. I definitely do not want to bath Brad when he older because he refuses to use soap, but I have to because that's my job.
You can purchase the book using the link above. The book comes in paperback and kindle format.
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Please leave a comment. Thank you. Stacie