I am the mom of surviving quadruplets. My blog covers the birth of my children, their special needs, therapy, homeschooling and what it's like to be the mom to these special kids!
My autistic triplets (well surviving quads, actually).
I have autistic triplets (well surviving quads, actually) and no, it's not fun, or a joke. I wish they were just normal kids but they are not.
James, far left, is considered high functioning autistic. Thankfully through intensive therapy he "looks" normal and many people do no immediately notice anything about him.
My daughter, Margaret, is a wanderer. There is little more terrifying than waking up and having your children gone from the house! It was one of the worst mornings I have EVER had! You can read about it here. Thankfully, at eight, it is not as bad. I know she gave me grey hair by disappearing (she LOVES water) and running in front of moving cars!
Joseph was recently diagnosed with autism. There had been questions for years but with his intellectual delay and other medical issues the doctors were unsure. At eight, his recent visit to the neuropsychologist decided it was time to diagnose him since, to her, it was clear he had autistic tendencies.
Since their birth they have been in therapy. Even now half of my day, three days a week, is taken up by them spending time in therapy. I don't have a lot of funds to pay for therapy out of pocket. I have to fight tooth and nail to get them all the therapy I could. I fought with Early Intervention to the point I filed a Due Process complaint and won. I fought with the local school district after they aged out of Early Intervention. I have been fighting with doctors and specialists since their birth. It has been one BIG LONG FIGHT since they have been born! What's worse? Margaret and Joseph may need care after I am gone and I have no idea who will look after them and how I can afford it!
When these children were born I also had two teens at the time. When I first told them I was pregnant they were fine with it. Actually, they seemed happy. When they found out I was having quads and we would need to move they were NOT happy any longer! Due to the drama of the quads birth, the loss of one of my babies, moving around, and the financial strain we were under my teen children left my house to move in with their biological father. It broke my heart (again) when they left but I could not keep them in the house if they did not want to be there.
My children have brought me the greatest joy and heartache I have ever experienced. That is just being a parent. If you are unhappy with your teens then I suggest you look at yourself. I know I have. I can't say I am happy with my, now adult, children and I often wonder what I could have done to make things better. Saying I would be willing to trade any of my children away, for autistic triplets or not, I think is horrible. I may not be happy with my oldest children but I would not trade them for anything. Instead, I pray they see the light and come back to me.
I realize Rosie you thought you were being funny. That you may have said this off the cuff but now you should apologize. Not just to the autistic families you have outraged but to your teen children. How do they feel about your "joke?"
Play-dough is SO much fun! I have tried a few recipes and I have seen a couple of recipes with a cooked version of play-dough. I was not sure I wanted to fool with heating the dough since I have a tendency of burning myself on the stove but I thought I would try some for a meet up we were having the next day in the park with some homeschoolers.
I doubled the batch. It was harder to cook because of that but I have three kids so I wanted to make
sure I was taking enough to the park. I suggest halving the recipe.
Here is the recipe I used. I am sorry fellow blogger but I don't remember where I saw this recipe or I would give you credit!
I took the first four ingredients and placed them in a large stainless steel pot. I started the heat on the burner at medium. I wanted the liquid mixture come to a simmer. I stirred the pot occasionally. When the liquid began to bubble I cut the heat since I had the salt dissolved into the mixture completely. I added all the flour and started to mix. Once the flour absorbed the water I put the heat on low. I would stir, mix, cut mixture and flip. I tried to keep it moving until the flour was a bit dry. Again, I moved the pot on and off the heat, as needed, to make sure I did not burn anything. I would keep testing the batch by pinching off the dough and squishing it in my fingers. The test: Does it feel like Play-Do?
Once the flour mixture had the feel of Play-Do (maybe 5 minutes of cooking) I turned off the heat and let it sit for a bit. I covered my cutting board with plastic wrap to keep the food color from dying anything but my hands. Should I mention my right hand was purple at the end of this project and my left was orange? ROFL! Pick one hand to mix dark colors and the other hand to mix light colors or your colors for the play-dough will look muddled! You could use gloves but what fun would that be???
Basically you just made a version of salt dough. It hurts like you wouldn't believe if you get the dough on your skin while still piping hot! I know folks! As I said, I tend to burn myself! LOL
Once the mixture cooled but was still warm (basically I handled it as soon as I could) I divided the batch in half. Then I took one half and made a large log out of it about 4 inches thick and about a foot long. I cut that into four equal pieces with my board scraper.
Each disc I colored a different color using a combination of gel and liquid food colorings. I also found some gel food coloring I had that contained glitter. It was a nice subtle effect. In the pink color I added orange flavoring to create one with a scent. I am glad that was all I did for park day because I did not think about the scents attracting bees. Please keep that in mind if you play with the play-dough outdoors!
The second batch of dough was also four inches around when I rolled it out but it was longer so there were more chances to make other colors. I was trying to keep most of the colors in a nature theme since we were going to the park. Once all the play-dough was colored I formed them into balls and wrapped them in plastic wrap. They were still warm and water was starting to form in the plastic wrap so I placed them in the refrigerator overnight. That kept everything dry.
When we went to the park the next day the kids had a blast! One of the moms asked what recipe I used since it was the most realist homemade play-dough she had ever felt. Success!
In the end, all the play-dough came together in one huge pile. I knew all my hard work would be obliterated. LOL The kids had a ton of fun and that was the most important thing!
DaNG! I am still having problems with my eyes. I was able to get homeschooling done today besides using homeschool software. LOL The kids finished the first unit in their Social Studies book. James is also learning about the Pony Express since today is Appreciate Your Mail Carrier Day.
I finally got on the phone with the agency that helps with respite and rehabilitation work. Maybe I will be able to find someone to help me! We will see!
Chemical Formula for Clarithromycin Photo Credit: Wikipedia.org
I had my Anniversary on Jan 1st. John and I celebrated 16 years of marriage. It has been rough over the last several years. It is nice that we seem to be more on the same page now than we have been in years. After the week of my anniversay I got sick with a cold John brought home. Thankfully the children did not get more than a cold but I got EXTREMELY sick. In the end I had pneumonia. I was given the antibiotic Clarithromycin but on day 3 I think I developed an allergic reaction. My eyes became itchy suddenly. After about an hour my eyes were itching so bad I went to to look in a mirror. My eyes had turned red, the surface of my eyes appeared ulcerated and swollen. It took 36 hours for my eyes to become "normal" enough for me to drive. I went to see my doctor and she thought it was an allergic reaction also. I had to switch antibiotics. In the meantime my eyes still do not feel right and I need to get into a doctor. The itching of my eyes is horrible! So for the other three weeks in January I was fighting to feel better. Not the way I wanted to spend January but hopefully we will not have any other illnesses this winter!
The Powerball has been driving many people into a frenzy! I don't blame them! I feel the same way. I even spent $4 on a ticket. The jackpot is reported to be up to 900 million dollars! Yes, you saw that right! It is all most to one BILLION dollars! Here in my home state of Arizona it is said you would get $347 million after taxes as a lump sum or deal with $18 million dollar payouts for the next 30 years!
A friend found posted in her local paper the odds of winning the jackpot is huge and unlikely! There are things a LOT more likely to happen to you than winning the lottery. You can see the list on the left. What tickled me is the odds of giving birth to quadruplets is 1 in 729,000. I had slightly more chance of being killed by an asteroid strike than having been pregnant with my babies.
If I had beat those odds, maybe the Powerball will be easy??? LOL
Good Luck to you and may you win! If you do win, call me! ;)
It is not uncommon for things to interrupt the schedule. Friday the children have occupational therapy and that takes a bit of the day. While they were busy I was able to get some cleaning done. I check my email and I find the neuropsychology reports were finally in! Yea! I go and read the reports and find that there were quite a few errors. This is common when someone sees all the children. They tend to get the information for the children mixed up. It took me over three hours to print, read, and correct the reports with a lot of interruptions in between so there was no homeschooling. Thankfully the medical history stuff was really the only part was the only part that was jumbled. That was the first two pages. I did find errors in other areas of the report but they were small. When the report got to the testing and results I had to slow down my reading just to absorb what was being said. It's tough to read. To see your children's strengths and weaknesses put in such a bright spotlight!
Corrections from Joseph's first page of
his Neuropsych report.
First I read through Margaret's report. I knew it would be less complicated and I was curious of the doctors impression of Margaret. The report states Margaret was diagnosed with autism at two. This is wrong. Early Intervention (EI) in Nevada was of NO help! I had one care provider come into my home and yell at me because I was not forcing my children to sit down and read to them at two. She was a nasty person that I did not let back into my home. She was on there twice and the second time there she said my children were running around wild and that if I taught them to sit and listen then her former job as a Kindergarten teacher would have been a lot easier. I was so angry I sat stunned for a moment. I had to stop myself before I said something really angry myself. I reminded her that she now worked for EI and that the children she saw ALL have issues or else she would not be there! Then there was my main EI support coordinator. I kept tell her how unusual I thought Margaret's behavior was (constantly in motion, only said things she heard from TV, her dancing, singing, running around waving her arms, her lack of interest in things and when she was interested in something how it was an unusual preoccupation). She never mentioned to me about the possibility of autism. No, I find out about that by running into a woman while I was at a free class on how to file for divorce in Nevada (yes, having multiple disabled children has strained our marriage). This lady spoke up in the class and mentioned she had disabled children. So I stopped her and talked to her in the parking lot after the class.
I explain to this stranger Margaret's odd behaviors and she said it sounded like Margaret may have autism and I should get her evaluated. Not once was this mentioned by any of the specialists we had seen, her regular doctor, or any therapist. No one! This stranger, an angel is how I think of her, pointed me in the right direction. SHE had the nerve to mention the big A word, autism! I went back to the EI coordinator and asked why she had not mentioned autism. Do you know her response? She said, "You had filled out the ADOS and it did not score high enough to test for autism and it is not my job to say anything." What? You are with EI! How the heck was *I* suppose to realize it was autism? What was this ADOS she mentioned???
When EI first came to my house tiny 800 sqft home to do the intake they did not tell me who all they were bringing. They show up at my door with FIVE people on their team PLUS TWO interns. We squeezed them all in (people had to sit on the floor) along with my husband, myself, and three two-year olds. In the chaos these people where firing questions at both me and my husband about the children while they were buzzing around us. There was a ton of paperwork to fill out so John thought the would help and fill some out himself. Even though I was the main care provider for the children the the last year he filled out the paperwork. John filled out the ADOS. The way he scored it and they way I scored it was VERY different! John's evaluation did not score high enough to warrant more testing yet when I filled it out Margaret was considered borderline and worth testing. This happened ONE MONTH before the turned three and aged out of EI. I was able to get the initial testing completed and that came back as inconclusive. After more psychological testing and observations she was diagnosed with autism at about 3.5-years old.
I lost a year of her autism diagnosis (which does help you get more services) because I thought autism was a kid who did not talk and bang his head on a wall. There was SO much I did not know back then! Little did I realize that was only the beginning of my journey of digging into the medical mystery of Joseph, determining answers for Margaret, and trying to keep my head above the water with James.
Back to Margaret's report....
The report is broken down into sections. The first section is Behavioral Observations that occurred during the testing.
Behavioral Observations:
Decent eye contact but poorly modulated and uses minimal pointing or gesturing
Speech was variable with occasional echolalic and slurring (speaking too fast) speech
Easily distracted with long lapses in attention
distracted by sight, sound, and sensory
Test Results for:
Visual/Spatial
Falls in low average range for same age
Sustained Attention
Attention issues observed and verified by testing
Variable ability to encode new information across tasks
effects ability to efficiently learn new information
Low frustration level for tasks not readily understood
Executive Functioning
Area of weakness
Cognitive flexibility is weak across multiple measures
Fluid reasoning is variable and fluctuates depending on the nature of the task and if a pattern was easily identified
Fluid reasoning is the ability to solve a novel problem
Working memory is a significant weakness (I used to joke around she has the memory of a goldfish. Apparently, I was pretty close to being accurate. :( )
Working memory requires the use of holding information in short-term memory and requires adequate attention and concentration in order to complete tasks
Memory
Significant variability was seen in testing
Performance on immediate memory tasks was generally lower than her performance on delayed memory tasks
Margaret will need more time to consolidate and store new information to memory
Testing shows an issue with visual encoding of new information
She is more of an auditory learner at this point. Maybe due to her vision problem now and needing glasses?
Difficulty maintaining adequate attention over time and from task to task
Processing Speed
This is an area of relative weakness and falls in the impaired range with others of the same age
Testing tasks used visual scanning and visuomotor coordination
Sensorimotor
Fine motor delays have been a history of weakness and is still an area of relative weakness
Problems with visuomotor integration are a relative weakness falling in the 1st percentile when compared to kids of the same age
Handwriting samples were poor with immature pencil grasp
Grooved Pegboard and bilateral tasks concerning fine motor skills were in the impaired range
Academic Skills
Reading and reading comprehension skills are an area of strength
Math skills are significantly weaker and less developed in calculation and applied math
Social/Emotional
Observation shows pragmatic speech and communication delays
consistent with autism
Ability to understand people's perspective might be different from her own is borderline
Summary
Strengths
Reading skills, verbal reasoning abilities, and visual reasoning abilities, good eye contact, ability to spontaneously share information, and asking for clarification when needed
Weakness
Distractability, cognitive flexibility, working memory, inhibition, planning behaviors, tendency to withdrawn from social situations and retreat into her own imaginary world, repetitive speech patterns, and pragmatic speech skills
Diagnostic Impressions
Autism; Encephalopathy, NOS; and ADHD
There are a lot of academic and social recommendations along with about 9 books for recommended reading.
I know Margaret has issues but I have to admit I cried a few tears reading this. It is hard to read the tough truth about your child like this and not shed a tear. My dream for her is to be able to have a profession, if needed, to take care of herself but my wish for her is to have her own family someday. This lets me know we still have a long way to go for that to possibly happen. On the other hand we Margaret is running around with her old block that rattles and she is telling me that he is an asteroid bear that has come to Earth and crashed his imaginary space rocket in our backyard. Then she heard Pandora play the song Let It Go and she starts singing. It is tough wanting her to grow up and then turn around and listen to her crazy, quirky imaginary stories. My heart breaks for her in some ways. Will she always be carrying imaginary stories AND still be responsible enough to take care of a baby by herself? Will she be able to hold a job and not forget to show up? I just don't know and only time will tell....
Margaret singing Let It Go but getting distracted.
Margaret telling me her grape kool-aid looks like a black hole.
There is rarely a dull moment around here. The kids have been busy with school and therapy. Today we spent time working on math. The kids decided to turn it into a game. The next thing I know we are all having fun, laughing and cheering. THIS is how homeschooling looks!
Another things I love about homeschooling is being surprised at the skills my children acquire when I am not looking. I had NO idea Joseph could write his numbers so beautifully! His handwriting is pretty good! What I find amusing is that his handwriting seems to be the best out of all the children. I never would have guessed that!
