Tinka misses so much school it bothers me so much. His asthma is always flaring up. First he will be sick and then he will slightly get better and allergies kick in. I even have a doctor’s note allowing the school to give breathing treatments. I don’t know what else to do. School is so important to my little guy. If he doesn’t go to school he gets super deregulated and will start running around the house, repeating the same phrase over and over again laughing hysterically. Stimming walking in circles. I don’t know where to begin to find him sensory equipment to make him more grounded (I think that is the term). I don’t have unlimited money where I can just buy everything and try it out. I have a couple ideas that are low cost. I need to buy a ton of kinetic sand to go in his water table. That is an activity he can do in the house. Another is a rocking like board with suction cups at the bottom of it. It wilk work on our hardwood floors. There is a hanging nest that I want. I saw another version that doesn’t hang but it’s like nested chair but it cost like $300.00. I need to find something for the days he stays home sick and for the weekend.
Tinka says alot of things that I don’t quite understand. Since he is only six years old I can’t ask too much because he is not able to explain to me the way I understand. Tinka always has used the term Humans, Big humans, and Little Humans. He would tell me when he grows up he will be a Human. I would ask him is he a little hunan and he would tell me no. He would say when he grows up he will be a Human. I didn’t understand.
I love Instagram I get to read older Autistic people’s thoughts. I stumbled upon this person who has Aspergers like Tinka and she wrote in a post and mentioned Humans. I thought oh my I could ask her what does she mean by that term. It was like finally finding the answer to a question that was bothering you for years. She answered and said she uses the term when describing people and doesn’t want to use gender or other classification. I was so happy she responded. Of course I wanted to know more. The more I know can help me understand my sweetie and help him navigate through this world of ours. She answered alot of my questions and I will be forever thankful. These doctors don’t have Autistic children. Whenever you have a question they refer you to ABA therapy or away from them because they don’t know. Why not throw you to someone else. It is so lonely as a parent who is willing to anything to help their Autistic child. There is no support groups, only stupid Autism walks that don’t help parents like me. People ask why won’t I start one, I wish I had time. My Tinka keeps this Human, Old woman, Girl (that’s what Tinka referred to me this morning on her toes everyday.
So if you have read the 200+ posts on this blog you will have an understanding of the hard journey we have gone through with Tinka. He was diagnoised three years ago when he was non verbal as having low functioning Autism. This announcement crushed Dad and I. Now after all the struggles and teaching we have something to celebrate. I found out this wonderful news when I spoke with the Neuropsychologist that conducted the School Psych evaluation IEE. The whole IEE process has and still is horrible because the district is making it undesirable to conduct these necessary IEE’s. Anyway when I went to the office to hear the results of her report I was scared of the unknown. The meeting started off and she spoke about what she observed in his classroom, her testing she conducted with Tinka, and then she mentioned that through her testing she said he was now diagnoised as high functioning Autism/Aspergers. I almost cried. All of the work, crying, the problems that having an Autistic child can bring to a relationship, it was all worth it. I also makes alot of sense because Tinka is using a vocabulary that is way advanced, he wants to learn everything around him. I just can’t believe it. I made a mistake of mentioning the term Aspergers and Tinka said that word has a bad word in it and the word burgers, while he laughed (always happy). Of course he had to say the word Ass-Burgers. I don’t want him to know that he has Autism so we don’t use those words around him since he is so smart and he might catch on.
This past weekend on Saturday Tinka got up before anyone and was playing in his room. I started to wake up because he has to be supervised or he might start cooking by himself, because he believes he can do anything by himself because he is a big boy. When I got my wits about myself Tinka was standing naked in the doorway of the bathroom showing me his hands, saying my hands are clean mommy, I wiped myself. Let me explain why he was naked, everytime he has a bowel movement he has to take a bath because he has to be fully clean or there will be a problem. Anyway I was so shocked that without any help or assistance he was able to wipe himself. I had him sit back on the toilet and I wiped him once and for his first try at this it was pretty good. This was one of the milestones I was scared of teaching him. I thought how would I teach my Autistic son how to wipe his behind? Would he be a child that doesn’t know how to do it, and I would have to do it for him? All these fears are gone, and I know how to work with him. It is all about not making a big deal out of it, and assisting him when he needs help. I just hope that he never gets anything on his hand or it might be over. He is incredibly clean and he doesn’t like imperfections like marks from cuts. He covers all old and new cuts he gets on his skin with markers like coloring them in. Somehow that gives him less anxiety when he looks at them.
Change is hard but sometimes necessary. In this journey we call life, we only have so much time and it shouldn’t be spent feeling sad or upset. We should feel happy especially as a parent of an Autistic child things that are simple to non-Autistic children are harder and are sprung upon us without any notice or time to get advice from a pediatrician or an “Autistic Expert” (I don’t believe in these experts unless they have and lived with an Autistic child). For example, Tinka the other night started crying out of nowhere. I thought he feared something, but then I could see that he probably tired, and he had to pee and wanted someone to come with him and watch him in the bathroom because he was scared. Once we got in the bathroom he peed and then I started running him a bath. He stood in the water and said he didn’t want to and he was going to hold it. I thought ok it’s boo boo time. So, thinking on my feet I said do you want to boo boo at school? He said no but he still didn’t want to go. I told him that he could watch one of his favorite YouTube videos while he boo boo. He agreed, and I stood in front of him on the toilet and held the phone where he could see it as he took a bowel movement. After finishing he was fine and straight to the tub. Then snugged up with me watching his new favorite video Inside Out which talks about characters in a kid’s brain. He would like this movie because he is always talking about his brain and how it makes him feel. My point is there are hard times and we must get through them.
There are also happy times like yesterday I picked Tinka up from afterschool program. Super stressed car was acting funny because the battery connection is loose or something and making the car not have power, this always happens in front of his school when I’m picking him up in the evening. I opened the hood moved my hand around and the power came back on. When I was picking him up the afterschool teacher said today they were practicing for the afterschool performance and she was trying to get the children to dance with each other. Boys with the girls. Everyone refused except Tinka. Tinka danced with a girl and he twirled her around. After that all the girls wanted to dance with him and then the boys were willing to give it a try. I told her that Tinka is a little leader, and I was so proud of him.
There is always good moments and bad moments in this Autistic journey that is my life and I always try to stay positive, because there is no point to be negative because this is what it is, and nothing is going to change.
I never thought I wouldn’t have to be my child’s playmate, his only friend because children didn’t want to play with him when he wasn’t verbal and after when he was verbal. Now three years later after the ASD diagnosis I can sit and relax (not on my phone) still watching him, but not intervening and helping him with social situations. It feels good and a nice reward for all of the work that went into Tinka to get him here.
I took Tinka to a new park yesterday and it was filled with potential new friends. It is so spacious, and it has sand! We pull up I ask him if he wants to ride his bike first or go explore. He said he wanted to explore. So off we went. We dropped Bri off at a little restaurant she wanted to get something to eat and then walk to us. This park has a bike and a walking lane separate of each other. It has like tiers to the space. The upper tier is a climbing structure with a separate chimes area that the children can use the connector item (don’t know what is called) and hit them to make music. Tinka loves to climb and he went up and down on the structure and then he saw the slide on the lower tier. He looked a little scared, but he got on it, and then walked up not using the rope just the little steps and his hands like he was crawling upright. On the lowest tier beneath this on is the sand and water. I didn’t bring his bucket, but I had a rake in the car and I went to get it and we saw his friend from school. This little boy is wild jumping and running on everything. I met the mom a couple of days ago and she mentioned a play date. She said as I sat down next to her teenage son, her, and her husband that I was lucky that Tinka was so well behaved. I said thank you, but in my mind, I laughed because I wish he was able to take more risks and not put all that thought into it, and it must be perfect in his mind. That damn Autism! He would never in a new place act like her son was, like he was free. And Tinka looked like he was having fun but in his controlled environment dictated by his brain. Side note he is always mentioning his brain and how crazy it is, and his thoughts.
He said he wanted to get on the tire swing which was next to the sand. I was proud he wanted to, and I put him on and then all the other kids left. They were all older than him, but tiny, Tinka is 4ft 2inches tall at 6 years old. A little girl who I found out later was in first grade got on with him, and I pushed them for a while, then another child a boy got on. Tinka was yelling and saying he was so scared but laughing. The other children were standing up, Tinka was sitting and holding on for dear life. Then the dad of the little girl was going to push and Tinka said he wanted to get off. He came over to me too dizzy and laid his head on my lap. I told him to sit and I held him as he said he didn’t like how being dizzy made him feel. I gave him water and he spilled it on his pants. He usually would freak out and want to leave. This time I told him that it is not a big deal and the sun will dry your pants. We started walking to the car after resting for about 15 minutes. As soon as I passed the structure he said he didn’t want to leave and started playing on it. A little boy approached him and asked how old he is. Tinka asked how old he is, the little boy said he was three. Tinka said I am three years older than you. The little boy said four. Tinka said no and started climbing. I thought this is the second time he has spoken math word problems in real world situations. Interesting I will bring it up to his psychologist, maybe we can figure out how his brain makes him understand things. Anyway, Bri called me and was going to meet me at the beginning of the path. Tinka wanted to ride his bike with training wheels. We started off on the path towards where Bri would be coming and it was very hot. I gave him a puff of the asthma pump since he still has congestion and I didn’t want him to lose his breath and go into a coughing spell. We made it half way and then his training wheel broke finally. I posted about his faulty replacement training wheels I bought on Amazon. So, he ran back with me yelling his name dragging his bike. I told him that he had to be with me when I put his bike up. He stopped feet away from me I was at the car and yelled, “You’re a big human you don’t need me to be with you, you’re not scared! I told him he is a little human and little humans must be with their mommies or daddies or they are not safe. I guess he took that for an answer and came to me. Bri made it to the park and was trying to sit away from us. I told her to come by us and she ended up getting on the slide with Tinka and making sure he didn’t get hurt by the big kids going up the slide. The Ice cream man pulled up when we were leaving, and I got them both ice cream. Tinka’s fell on the way home because the stick was not in it correctly. He wasn’t that bothered by it, he wanted to get home, so he could play Roblox. Overall it was a wonderful day and we found a new favorite park!
Today Tinka made it to school on time. He was getting there late due to his Asthma treatments via the nebulizer in the morning to try to stay on the school’s schedule of a breathing treatment at 12pm. I walk him to the yard and usually he would just hold my hand and stand to the side and wait for the bell to ring. Today a little boy was yelling his name before we even reached the yard. I told Tinka to acknowledge him (I use big words to enhance his vocabulary, and I tell him the meaning if he doesn’t know). Tinka said hi and they both went into the yard. He started running and to my amazement Tinka started chasing him. When the both reached their line, the little boy said, “I love when Robert (real name) plays with me! And then he ran off with Tinka at his heels. While I was holding back happy tears this mother approached me and said my son is always talking about your son and how he loves to play with him. I was speechless and then the bell rang. Another mother said that she would like to set up a playdate with her son and Tinka. I had to rush somewhere so I didn’t bring my phone out of the car, and she didn’t have her phone either. So tomorrow we will exchange numbers. We talked for a second about the President’s week we just had and now Spring Break is approaching. She said she has a high schooler and I said I do as well. I’m so incredibly happy that Tinka is so social that parents are seeking me out for their children to play with him. Who would have thought that this would happened? When he didn’t have language, no one wanted to play with him. Now everyone wants to be around him and in his presence.