I do not get sick often. This past Thursday I got sick. It felt like stomach flu. Not pleasant at all.
My husband thankfully was home that day. I went to relax and then took a nap.
As I was falling to sleep I hear Adrian. He is waiting for daddy to make him lunch and is talking about mommy being sick.
He says very sweetly “daddy mommy is sick, she vomited and her tummy hurts. We need to take care of her like she takes care of me”. Then daddy asks Adrian how he could take care of mommy “soup and leaving her alone so she can sleep”.
I wake up to “mommy your awake. Do you feel better?” with a sweet kid like that how could I not?
Then he starts talking about the time he vomited all over his room and mommy had to scrub it clean.
And people say no child with Autism can understand oh they don’t have feelings and they can’t think like us. I’m pretty sure our son would prove any doubters wrong in an instant.
He has thoughts, feelings and can show empathy just like any other child alive. Different, not less than!
My husband and I do not go out often. Since giving birth to our first child I have gladly given up those carefree nights of going out. Our first child was born while we lived on post in Fort Sill, Oklahoma. We did not have family around at all and I rather throughly enjoyed being at home with Jade. Adrian came along 28 months later after my husband had finished his service and we moved back to Michigan. We had all of our family around and that is really helpful. Our Adrian was not your typical child. He did not want to be held by anyone but me and cried when even I picked him up. We left him with family members occasionaly until age 2.
At that time he started having a lot of anxiety about me leaving him. He would scream a lot of the time when I was gone. At this point I really had no idea what Autism was or signs. I was so clueless. I had a child who had just begun to walk and could not speak. Every minute was spent trying to keep him from destroying something. He had delays and our early on worker had quit without warning. They never sent another worker out.
I could not see leaving my son who was joined at the hip to me basically with anyone for any period of time. I loved being with him. We spent a lot of our time with me trying to engage him. At 3.5 he started a program at our district school for Special Education. He was immediately enrolled in speech therapy and it did not take long before he was speaking. He started voicing his disdain for my leaving him. He did not like being left with his dad. Any time we chose to leave him I would hear after about him crying for mommy the entire time. It always upset me. I opted not to leave him anymore. We rarely ever do. I always reassured him that I would be back. Now since he knows time I tell him what time I will be back.
After diagnosis we started receiving a subsidy check from our state which is for children with certain disabilities. The director offers us Respite services every year. I have refused because of Adrian’s extreme separation anxiety. Respite in our area requires that you find a caregiver who the state will pay to watch your child so many times a year. This week he made progress. My husband and I decided to go out for the first time this year and asked his sisters to watch our kids. When we left the kids were playing in an outdoor pool. We were gone 5 hours and when we came to pick him up there was no running to me to have me pick him up and he did not cry or ask for me once.
He is becoming so independent. Part of me is sad because he is the last child I will ever have, but the other part is so happy because he was not anxious worrying about me. This time last year he would have still been asking for me. I am so proud of him and how far he has come. He will always be my baby, but I am glad to see him improving a skill. It is important to want to be independent. Steve and I cherish every minute he allows us into his world but i do not want him to feel anxious every time I leave. It’s not good for him. I am more than willing to give everything I have to the two greatest accomplishments of my life. Our son letting go and having confidence means we must be doing something right. The photo below is of Adrian at 3.5 on September 22, 2007. Shortly after he started his Special Education program.
This year my son started First Grade, turned Eight years old, and started his old stuttering habit again.
Adrian has always been a child of cycles. One month he is a child who adores and can not get enough of Thomas the Train, the next it is all about Phineas and Ferb, The next it’s Dora and Boots. These changes have always been boggleing to me. I have a child who absolutley hated transistions but moves with ease from one interest to the next every couple of days weeks or months.
I often thought this might be a prelude to the often misunderstood BiPolar disorder. After all he was diagnosed with Mood Disorder along with ADHD, Sensory Processing Disorder and PDD-NOS. Not long after Epilepsy too. The more I read though the more these cycling interests appear to be “normal” to children on the Spectrum.
When he is in a cycle it is all about that subject. He will speak nonstop about whatever his interest is at that moment. We will hear echolalia from whichever show he is Perseverating on or he will hum a tune from the theme or run around saying “Would You Like A Muffin” to everyone he meets. For those of you who do not know this is a direct Quote from the movie Phineas and Ferb Across the 2nd Demension. He sings a certain song from Walle or says things from Dora. Earlier today he was playing the Simpson’s Arcade game on his iPad and said “Whose in that Robot costume” and the Spanish word for watch out I believe. That’s exactly what Dora would say.
These cycling moods have followed him into school. His Special Education Teacher and I had a phone conference yesterday and she was talking about Adrian’s cycling moods and interests. I have told every teacher he has had that he has cycling moods and Interests. He has since I can remember. Anyways she was the first one to ever acknowledge this as fact, EVER. Any other person always claimed they didn’t notice or said nothing. I know I’m not crazy and I know my child so how they couldn’t notice I don’t understand. I think they may have been trying to spare my feelings and hide the truth that this is Autism.
We did not get Adrian’s official diagnosis until the end of his three years in ECSE in May of 2010. It’s been two years. Adrian has made great strides. He is able to transistion from his General ed classroom to his Resource room. He uses the Resource room for Writing and Math. He is in a peer group of three other Second grade boys doing Second grade math also. The school is planning to try to get an iPad for Adrian to use by himself at school. They hope to do Writing and peer interaction with the iPad. I have some reservations about an iPad being used for peer interactions. Here at home he is the master of his iPad. He is very protective of it and of himself being the one who gets to use it. I have requested that he let Jade borrow it so that she can read an ebook on it. That was not well received. He was able to sit and wait for 15 minutes with little fidgeting. That’s a great accomplishment for him. The last 10 minutes were a nightmare of him yelling and whining for his iPad. I am not sure how well he would share with a peer. If they are not able to purchase an iPad I offered to possibly send his in with him. This comes with other risks of it getting lost, stolen, or broken. I think he could benefit from using an iPad for writing. That is what we bought it for in the first place. He loves iwritewords! I need to purchase Microsoft Office for his iPad so he can create word documents. I would love to put my Social Stories book by Carol Gray to good use and write social stories for him that he can access too. I just haven’t got there yet.
It is my plan to work on the iPad with Adrian over the summer, toilet train, and pencil work. I expect to be posting often about our hopefully successful experiences.
A Social Story about substitute teachers.
My son’s favorite phrase for the last two years has been “Don’t Say That Word”. My husband and I joke about it often!!
My son hates people saying any words he deems “Naughty Bad Guy Words”. Even if they are not swear words. He likes to dictate as much of the conversation as possible when he chooses to participate.
My husband and I were just discussing another feature of Adrian’s personality. Yesterday I was with my mother when she was talking about her college days. She was describing to me her test taking skills. There was a day where she had to take a test and the professor did a review of test material. My mother than went on to tell me that she scored a perfect 100 because she could remember everything the professor went over. Down to the paragraph and page number. This was 13 or 14 years ago. She has not mentioned if she can still do that, but did mention that her professor told her that that was a unique talent and asked how she was able to do so. My mother then told me she did not understand why everyone could not do so. She thought it to be a perfectly normal talent.
As I was listening to her all I could think of was Adrian. You see my 7 year old autistic son also has that high memory recollection. He can remember books his read verbatim and read them back to me without looking at the pages ever. So the thing I said next kind of shocked me. Mom that is an autistic trait. Do you think you could be? My mother has suffered terribly her entire life. She had the worst kind of childhood anyone could imagine, married an abuser and thankfully did as best she could to hold it together while raising four kids. She is not perfect but she loves us in her own way. She has always been distant and socially akward. I never even thought about autism and her until then. I always assumed by genetic defect that I passed down to Adrian was from my dad. Maybe it wasn’t though…
She will go with us when we head back to the genetic clinic this December. We are going to review because another child with mine and Adrian’s genetic defect has been found and also has autism. I think my mother maybe tested then.
I had realized I had a don’t say that word too. Autism. As soon as I saw the look on her face I regretted my word. Not that there is anything wrong with her reaction I can’t blame her. I would feel akward too. I had basically implied that my mother may be autistic. Heck I could be too. I don’t ever remember being like my son at any age I wasn’t bothered by people or noise. I did not seek sensory input. I do have the same gene defect though so anything is possible.
I am just saying that no matter how difficult don’t say that words should be discussed. Just like Steve and I discuss with Adrian and Jade the reasons not to swear or use other language. That everybody has accidental slip ups. That we are all human and make mistakes. I believe that it is important to lead by example and to discuss everything. Adrian has helped keep mommy and daddy in check. We all need reminders too 🙂
I finally got Adrian to bed. Jade is not so easy lately. They know school is coming quickly and seem to be wanting to savor every last moment of summer. Today was a crazy day in which we replaced a badly dying refrigerator. Adrian HATES change!!! Most of my day was spent listening to him repeating that we did not need a new Silver refrigerator, but needed to keep our old White refrigerator. He even went so far as to put himself in the refrigerators space and pretend to be the old one.
His uncle came over to help his dad move the old refrigerator and when his uncle went to pick him up I saw his body stiffen. Another change he was not expecting I am sure. Most people know not to touch him unless he initiates it. That does not stop a few family members from still trying to hold him or pick him up. You can see the physical changes in his body. Though he did not react the way he normally would today. He did not scream at his uncle. I tried to explain to him why Adrian does not like to be touched and he said it’s okay he likes me. I said it is not about him not liking you. He simply does not like to be touched. He said nothing and told Adrian he would see him again soon to which Adrian replied see you again soon. This uncle is one he does not see often maybe four times a year. He does like him though so that is good 🙂 I just wish more people would get it.
Back to the refrigerator… The delivery men arrived and Adrian tried to run out to them and say hello! Something he did not do before teachers started insisting that he greet people. Now he thinks it is okay to greet everyone. We had our discussion about why we do NOT talk to strangers and he looked for the new refrigerator. The delivery men had to take off our front door to get the refrigerator in and Adrian cried for the front door. He was wailing put the door back on. When the task was complete and the delivery men were gone I asked Adrian if he wanted to help me put our items into the new refrigerator. He of course was hesitant. He tried to put his Silk in the refrigerator and got mad because it is set up differently then our old one so he could not put it in the same spot. He often becomes agitated with tasks like this. If they went one place and no can not he gets angry. He helped for a little while and then lost interest.I am sure I will hear more about needing our White refrigerator back tomorrow.
The events of today have me thinking towards the school year about to begin. Adrian will be in a new school with two new teachers and new classmates. How does a child who can not handle the replacement of a refrigerator cope with that level of change? I expect many difficulties. This weekend I will be working on writing social stories for Adrian to take with him to school. Hopefully these stories will help get him ready for his changes. His school is having an open house on August 31. I plan to take plenty of photos to use in his stories. His last school had him do several trips to his new school last year to help prepare him. I am hoping that helps too.