Hello everyone. I pray everyone is well. In addition to our usual blog topics, I am launching a monthly blog entitled “life of an autism mom.” This will be an opportunity for me to update you all on Jayson’s progress both at home and at school. This monthly series will also include updates about me and how I “try” to balance the various hats I wear not only in my family but also out in the community or even while at work. So let’s get ready for some joys, sleepless nights, laughter, tears, sadness and everything in between! As we continue through this journey together, I want us to constantly be learning from each other. The journey of autism is a continuous and ceaseless cycle that is ever evolving, ever changing and ever relatable by autism parents, family members and caregivers raising a child on the spectrum. I hope you have gotten a chance to read Jayson’s journey in my book “How the small “a” autism taught me to pray big.” If you haven’t, please order your copy now on Amazon. Jayson is now a 5 year old, happy, playful boy in kindergarten… yes I said kindergarten. How quickly time flies. Let me catch you up on Jayson’s highs and lows for 2019-2020 school year thus far.
HIGHS: So Jayson’s highs so far has been him remembering his sight words. I can’t praise GOD enough for this. Parents and caregivers, because the autism spectrum is so wide, each of our kiddos struggles with either one or multiple areas in education. Jayson’s areas of difficulties have been more speech and sensory sensitivities. So when the teacher sends me reports like these:
I am in the living room/kitchen/church or bathroom dancing…you better believe it! Why you ask– because, the word of the Lord says “Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus”. From the bottom of my heart, I have just realized that thanking God for even the littlest things yields the greatest rewards… which is more blessings and more blessings. Thinking from where we started can make me start crying all over again because it reminds me of when Jayson couldn’t even say mommy. My friends always be thankful!
LOWS: Jayson’s low came in the beginning of the transition into the new school. The new environment, new schedule, new faces, a one-on-one…everything was really hard for him. So the first week going into week two, he had several bathroom accidents although he was fully potty trained. Another issue was him masking some tantrums and aggressive behaviors –behaviors he had never displayed up to this point. He was kicking, pushing, shoving and just didn’t want to do any classroom work. I took a step backwards and realized there was nothing I could do. I felt like I needed to go through the stages of grief that I mentioned in the book all over again and in some little way, I really think I did. I first tried to pretend that everything was okay, but as the bathroom incident repeated itself over and over I became more frustrated. One incident was so bad that it involved the nurse cleaning his stool from the toilet and the floor. I felt like I was back at stage one of grief, — ANGER! But I told myself…I can’t stay down too long this time around. I cried and cried and cried in private, but eventually, GOD saw me through this again and picked me up. Thank you Lord! Regarding his aggressive behaviors, I made time and met with the Special Education Teacher and his regular classroom teacher. We discussed strategies on how to calm Jayson’s behavior when and if they see him about to “go off”. I pretty much gave the special education teacher a “free massage” lol. I had to show them how and where Jayson liked to be squeezed and his main body parts that needed to be touched in order for him to feel assured or comforted during those difficult times. Afterwards, Jayson found his groove and all has been progressing really well for him.. .ALL TO THE GLORY OF GOD!
TIP: The one new thing I learned was that there are other cutting instruments that can help make cutting easier for our kiddos. When Jayson’s kindergarten intake took place over the summer, the teacher realized he had difficulties cutting (being able to hold the paper in one hand and the scissors in the other). Therefore for the rest of the summer, we spent some time trying to cut and hold the paper at the same time. ABA (Applied Behavior Analysis) also did their part to help, however when school started, it was still very hard for him. Below is a picture of the scissors he uses and so far, his grip, holding of paper and cutting has gotten so much better. Though he uses those in the classroom, while doing homework, we still use the regular scissors at home and I have realized that he cuts better with the adult scissors than the small classroom scissors. We will discuss more about this topic when we blog about assistive devices. Hope this helps!
The other issues I have been battling besides everything else mentioned above, is the sibling perspective as discussed in last week’s blog. Emma is having some difficulties in school and seeking more attention from me that I am beginning to now feel as though I have two…count it…two children on the spectrum. Do you all now see what I mean when I say we are ALL on the spectrum somehow! She is craving so much attention that I can’t even have time for myself. She is now a bigger problem than Jayson! YES YOU READ IT CORRECTLY! The kids have flipped. I remember one day when I was getting my hair done, there was a daycare provider also getting her hair done and she made the comment, “I would prefer to take care of autistic children any day than to take care of any typical child”. I just laughed in my head because even though she is not a parent of one, she is a grandmother raising an autistic child. She is raising her daughter’s son after her daughter left the child because she felt it was too much to handle an autistic child. I was so grateful to hear that the daughter had somewhere to leave the child rather than hurting her kid. Nonetheless, I digress! It’s only NOW that I think about that her statement of how easier (if you will allow me to use that word) to raise an autistic child than it is to raise a typical child.
So what have I done to remedy THIS situation? I have added yet another thing to my list of things to do (as though I have the time). I have started a mother-daughter monthly check-in where we go out, just her and I, AWAY from Jayson for her to feel extra special. I’m venting to you all because I don’t know what else to do. To end all of this, my friends I am tired! For the past 6 months I have cried, I have danced and laughed. I continue to learn so much from both my kids. I do my very best to be attentive to both of them in order to balance the different types of support and care that each of them need at this stage of their lives. You all stay bless and may the grace of our Lord be and stay with us now and forever!
Love you all
Your friend in Christ,
M.J.