My name is Sarah
I am a parent in the spectrum.
Like many of you, the word autism was not known to me until it became my reality. I still have a strange relationship with this word, not love, never that.
When my daughter, at that time two and a half and now eight was diagnosed as autistic, the message was delivered in a callous manner. I not only had to grief my dreams for my daughter and deal with this new world that was unfamiliar and scary, but I struggled to find others that could understand what this meant. Questions on how I could support my daughter and not lose my mind and of whether I had done something wrong that led to this situation filled my mind.
This blog space is my way of reaching out to another parent that is raising a differently abled child and sometimes just needs to know that you are not alone. I am no expert, just learning as we go and trusting God and His intentions.
I pray this space will bring you and I comfort as we raise children in a world that does not understand them and we stay strong and courageous for the task ahead.
The Beginning.
I remember that trip to the hospital when the fist diagnosis was given. To be fair it was both bad and reliving now that I look back since I hated the diagnosis and yet it finally put a name to all the observations we had made. My daughter didn’t speak at age two and is still learning o speak now. Gestal speech, another new word I have leant that we will revisit. Since we lived in an isolated space and this was during covid season, we though she was just not exposed to kids and once that changed, then things would change. She struggled with potty training and often liked her own company which we cheered on thinking she is miss independent. God! We really got those things wrong!
If you have received this diagnosis, you know exactly what I mean and why the diagnosis is also so punishing because, how could I have not seen and appreciated that my child needed help. We started pre-school and wile some things improved, some didn’t and a few more mature friends and our parents gently mentioned and pushed for a doctors visit. Thank you God for friends and parents who call us out when we are not willing to take hard steps, with love.
I still remember how agitated she was during the assessment, I had to step out with her and leave my husband with the doctor for some time then come back. The delivery was cold though, she has autism level 2, doc said, you need to go for a hearing test and book appointments for her to start occupation therapy. I don’t know if doctors have to be cold to separate themselves from the patient\s pain but I really wish she could have been a bit kind. Or maybe that was kindness, stick to the facts and ou can breakdown later.
Thank God for my husband, he noted I was spiraling and took charge, got us an OT within that week who could come for the sessions at home. Meanwhile, my brother was diagnosed with Covid and admitted in ICU within that same week. God has a way of bringing things to perspective and reminding you to count your blessings.
The questions that trip you
Autism is a funny condition, not haha funny, since it often doesn’t have external signs. You look at my daughter, tall and beautiful girl, like her mum, and can’t tell anything is different from other kids until you try to talk to her and she does not respond as you would expect. Then the questions start that really trip.
My son, my second and last born who is typical (or normal) as you prefer, asked me why can’t his sister talk like other children. Or ‘’auntie why is she not in grade 3 now and she is big?’’ Man! Those questions coming from such an innocent place really hurt because I know they bear no malice.
I am still figuring out how to answer them without dealing with the accompanying heartbreak that accompanies.
Now if you are a grown up and ask me that without tact, you might be met by my hedge hog spikes that present as sarcasm and shameless defensiveness. And if you start to mention ignorant things like witchcraft, you are dead to me for I have no patience for crap.
My daughter is beautifully and wonderfully made. Notice the full stop on that statement. The world will simply have to make proper room for her and I will be right there fighting for it.
Hiding behind ‘I am fine’
Be honest, how often do you answer those enquiring about your wellbeing and say you are fine when you really are not? At one point, we moved my daughter to a special school or an year and this allowed my to meet very wonderful parents and Teacher Eva. This Lady is God sent, full of empathy, patience and parental love. The best thing that happened to me there was the termly parents support group, kinda like the alcoholics anonymous we see in movies. I loves these sessions for parents could speak up and talk about their challenges and frustrations without shame and judgement, laugh at the antics of our kids, allowing us to give each other support and guidance. Some parents have children who are teenagers, others are toddlers, different seasons and a lot to learn from each other.
I wonder I there is such a group, where people meet in Nairobi, from different walks of like and just support each other. Somethings demand trust, vulnerability and intimacy. If you know one, please let me know, am keen to join. Or we start one?
Anyway, I realized that often, we struggle with depression especially in the initial years and without a support system, things can get really bad.
Let’s not assume we can do this alone. And please don’t expect one person to be it all for the burden might be too heavy, unless of course you asking Jesus. Lean on some friends who can support you and who you can trust, plug into a community and seek medical help where necessary. Prioritize your wellbeing, spiritual, mental and physical, shamelessly for the path we are walking is not for the faint and we must run the race and keep the faith.
More so, lets learn to lean on God for his yoke is easy and his burden is light.
Ps. We only changed the school because the doctor recommended an integrated one. Thank you Tr. Eva for providing that safe space.