Oct 28th began like any other day. Get up, get kids dressed and to daycare followed by work for me. I picked kids up and my daycare provider mentioned Mikey felt a little warm to her. We got home and his temp was 100°. Nothing but a little motrin and he’ll be good as new. He said his ears hurt… here we go again. We just crossed that specialist off our list. I told him I would call the doctor in the morning.

 

Took sister to daycare the next day and Mikey came to work with mommy. I called the clinic and we were seen at 7:30am. Fever was 99.7° no signs of infection. He went to school. Got him and his sister home that afternoon and he was on fever!!! Took his temp and it was 103.9°. He laid on the couch while I went for medicine and to call the doctor. He started calling “mom mom”, I went back and place my hand on his head, his eyes rolled back and he went into a seizure. Longest 30 seconds of my life. When his body stopped convulsing he kept saying, “mom sleepy, i go sleep, i sleep.” I didnt know what to do but I did not want him to go to sleep.

 

We instead rushed for the Children’s ER. He had a febrile seizure. They ran tests and cant find any other cause. The highlight of this latest ER visit was trying to get him to pee in a cup. He is programmed to pee in a toilet, thats where pee pee goes, NOT in a cup. Mikey knows, Mikey gets in trouble if he doesnt go pee pee in the toilet. Peeing in a cup was not “normal” for Mikey. Fifteen minutes later he peed in the cup and we were able to go home. We are now waiting to see a neurologist for a full work up just because of his past history with the silent seizures.

 

He and stayed home from work and school on the 30th as he had to be under constant watch for the first 24 hours. He was able to make it back to school on the 31st for his Halloween party and went trick or treating that night. Still dont know what caused the fever but he has been fine ever since.

I have not updated on Mikey in over a year. Summer 2012 we went in vacation to California to visit my family. Mom and two kids on a 4,000+ mile road trip. There were tears, screams, meltdowns, anger, frustration and at times laughter. We had a great time visiting touristy spots along the way and reuniting with friends.  At the end of the summer we celebrated Maylani Christine’s 1st birthday and Mikey’s 4th birthday! I finished up my Bachelor’s degree and graduated in December 2012.  Mikey surprises me more and more everyday. He comes home from school with a new word or song and is hooked on it for days. He loves his teacher Mrs. Kara. There have been no major health issues this year either thank God! The only minor issue was with potty training. It was discovered he had a stretched colon and was severly constipated even though he would have a bowel movement daily. He wasn’t passing it all. I am happy to report he is 100% potty trained now! Still an occasional accident but oh well. 

This summer 2013 I once again loaded up the kids and this time we headed north to Michigan to see Aunt Amanda, Uncle Robbie, and cousins Nathan, Natalie, Kaden and Carter. Grandma and Grandpa were there too. Mikey jumped off the diving board into the backyard pool! He loved it. We only stayed for a few days but we had a great visit. We stopped for a few hours in St. Louis and we took a tour of the St. Louis Arch. The kids and I road to the top of it. They each got a certificate stating they have been to the top of the highest national monument. Definantly a keepsake. I was amazed at how behaved Mikey was amongst thousands of strangers, new places, loud noises and none of his familiar surroundings.

We left the Arch and headed south for a hotel. The next morning we jumped in the car and headed to the Meremac Caverns. Jesse James hid out in those same caverns back in the day. The kids loved exploring the tunnels and Mikey was memorized by it all. We woud love to go back one day and camp in the area.

Speaking of camping… Right before school started we took a weekend getaway and went camping at Turner Falls. We hiked, swam, roasted marshmellows and just had a relaxing weekend. We even made some new friends that weekend. We came home sunburned but with lot of memories.

Mikey is in his third year of preschool and even learning to read. His favorite book is Brown Bear Brown Bear. His favorite obsession is Angry Birds. We still have our good days and bad days. He tests his limits quite often and is learning what can and can’t get away with. He is very quick to say he’s sorry though.

My promise to all is try to post on here more often.

Word to the Wise

This week has been a week of meltdown and tantrums for Mikey. Here is a little tid bit of information for all the parents out there with neurotypical children. If you see a child acting out in public DO NOT assume they are misbehaving and need to be disciplined. There is a difference between tantrums and an autism meltdown as I have learned in the past week from my new friend Amy Trail.

Tantrums (Age: 1 to 5 years)

–”Want” directed

–Goal/Control Driven

–Audience to perform

–Checks engagement

–Protective mechanisms

–Resolves if goal is accomplished

Autism Meltdown (Age: Through Adulthood)

–Overstressed/Overwhelmed

–Reactive mechanism

–Continues without attention

–Safety may be compromised

–Fatigue

–Not goal dependent

–May require assistance to gain control

I found myself dealing with both of these with Mikey this week and yes it can be hard to tell the difference between the two. But unless you are a parent with a special needs child you have no idea what that parent is going through. Long story short, I took Mikey in for a checkup on his ears and he was having a classic meltdown because his routine was messed up. It took everything in my power to keep him from running out of the doctors office. I repeatedly had to tell him to stop, he was ok and we would be leaving soon. To the untrained eye this looks like a mom that can not control her child and the child is being disobedient and defiant. This does not give the outsider the right to tell that mother to control her child and discipline the child. It took everything in my power not to knock that ladies teeth out. How dare she tell me I could not control my child. I dare her to walk a hundred yards in my shoes when Mikey decides he wants to do what Mikey wants to do.

He had a meltdown/tantrum before therapy. He was removed from the situation and we “talked” about his actions and how that was not the appropriate way to get what he wanted. After a few minutes of cooling off time he was over it and we rejoined his friends. A fellow mom looked over and said “good job, way to handle the situation.” That’s all us moms want to hear. We want encouragement and a little pick me up when things are not going smoothly.

If you want to piss momma bear off and risk getting punched in the face go ahead and assume you know the situation and spout off a comment. But if you were wise you would just keep your mouth shut and give her a smile and ask if there is anything you can do to help her.

Oh and his ears were fine and free from infection.

How it all began…

Michael Hudson III came into this world September 4, 2008. He was completely happy and healthy at 6 pounds 11 ounces and 18.5 inches long. He had a full head of hair and the perfect baby for first time parents. He was very mellow, calm, quiet and relaxed his whole first year. Teething didn’t seem to phase him too much and he was a very well mannered baby. Self weaned the pacifer at 4 months, he crawled for the first time on my mom and dads 30th anniversary (April 15, 2009) at their house. We flew down from Alaska to Washington state to surprise grandma Mary for the occasion. He walked all by himself a few days after he turned a year old and didn’t put up a fess when all the bottles got tossed out and replaced by sippy cups. He was the easiest baby first time parents could ask for. He met all milestones on time yet there was something missing. 

By 18 months of age he still wasn’t speaking. We noticed other things as well. He wouldn’t respond to his name at times. He never gestured to be picked up. He self entertained when he was with other kids. He didn’t point when he wanted something. These were possible red flags on the Autism scale. I was in denial and told people he did not have Autism. He would talk when he wanted to.

His pediatrician refered us to the Ear, Nose and Throat doctor for a hearing test. Mid April 2010 we learn he had a hearing problem. He has what is called “glue ear.” Super tiny ear canals and too much fluid blocking the ear. The doctor explained that if we were to stick a finger in each ear and talk at a normal volume that was what Mikey was hearing. I went home, stood by the couch, turned on the TV, put my fingers in my ears and cried. I couldn’t hear a thing and what I could hear was not coherent. My baby was deaf. No wonder he only responded when we yelled his name or were right next to him.

Mikey underwent his first surgery soon after to have tubes placed. I thought this would be the magic cure all and he would start talking in no time, at least that is what we were told by the doctors and other parents. We were refered to Early Intervention in Alaska and learned just how far behind he was in speech. He was about a year behind. A month or two after the surgery he only had a handful of words. We only had a few weeks left in Alaska before we got transfered to Oklahoma. Early Intervention put us in touch with SoonerStart in Oklahoma and got the ball rolling for intense speech therapy. I was slowly letting go of my denial and realizing there might be something drastically different with Mikey. I started researching this “thing” called Autism. What I was reading and learning scared me. Some of the stuff I read literally described my boy to a “T.”

June 15th 2010 we met with Sooner Start in Oklahoma and he began speech once a week for an hour. He slowly made progress. At his two year check up he was still deeply behind and we got referred to a developmental pediatrician. That was in September 2010 we didn’t get in for the evaluation until April 2011. There is only two dev. ped. in the whole state and we were seeing the best. The evaluation lasted 6 hours and was very intensive. It was found that he did show red flags for a form of Austim called PDD-NOS and Apraxia. He needed intensive speech and occupational therapy. The doctor said it would take her some time to look over all the notes and test results and she would get back with us.

Finally in June we got the results we were dreading but all ready knew he had. He does have Pervasive Developmental Delays-Not Otherwide Specified. It falls on the spectrum and is kind of the catch all category for autism. He has red flags in most all the categories but not enough to fit in one specific grouping.

A year had passed since his first ear surgery and it was time for a hearing test check up. He didn’t pass. Fluid was still building up in his ears. He went back in for more surgery and got his second set of tubes placed 13 months after the first surgery. He was a trooper and didn’t seemed phased by it at all.

We met with the school system and he qualified for the special ed preschool program. We got him on an IEP and he started school 2 days after he turned 3. He got speech and OT at school as well as private sessions for an hour each once a week. He flourished and was even learning sign language. His teacher noticed after him only being in school for a week that he seemed a little spacey and would “disconnect” and have a blank stare for 20-30 seconds then he would be over it. We had noticed it too but figured it was his way of “checking” out when he was over stimulated. Back to the doctor we go and it is mentioned he might be having silent seisures.

An EEG was ordered. That was a nightmare. We had to sleep deprive him the night before in hopes he would quickly fall asleep for the test that lasts about an hour or so. We got to the clinic and he hated it from the very first probe that was placed on his head. He screamed and cried and after 45 minutes I finally pulled the plug and said it’s not going to work. They had other patients they needed to see so we rescheduled for a longer block of time. Went back two weeks later and this time we got it done with minimal crying from both mommy and Mikey. Two weeks later I am still waiting for the results. I call and get told they have no record of it being done. “OH HELL NO!!! It was done and I WILL NOT be putting my son through that again. You WILL find the results.” They finally got someone on the phone that knew what they were doing and found the results. It all came back normal. He is just spacey. I can deal with that.

August 22, 2011 Mikey becomes a big brother. Maylani was born healthy at 6 pounds 9 ounces and 19 inches long with the same full head of hair as her brother. 

Mikey was the first one to see her and him and daddy were the first ones to hold her. He pointed and said baby a few times. He now avoids her like the plague but is never mean to her. He will hold her bottle for a few seconds or hand her a toy but that is about the extent of it.

It was then brought up that he might have craniosynostosis. The frontal part of his skull protrudes furthur out then the rest of his skull. It can lead to developmental delays, seizures and pressure on the brain. An MRI was preformed. They let me go back with him and I was able to hold him while they put the mask over him to make him go to sleep. That was the longest 15 seconds of my life and he fought it. It took three of us holding him. He went limp in my arms. I cried. I left the room so they could do the MRI. I went to the cafateria, bought me some breakfast and called Mike. He was not able to get off work that day. I cried to him over the phone and told him that the procedure would take about 45 minutes and then they were going to call me when he was done so I could be there when he woke up.

I cried again when I saw him on the gurney with the breathing tube down his throat. I laid next to him and about 5 minutes later he started to stir and open his eyes. I rubbed his cheek and the nurse came over to take out the tube and disconnect all the wires. He sipped on the 7UP and we were soon heading for the local ice cream parlor. Again he did great. A week later we learned he does not have craniosynostosis. Just a weird scalp.

The next few months went great. He was loving school. Starting to say more and more words and using signs that he has learned in school. December 2011, he said mommy for the first time and I cried like a baby. I waited over 3 years to hear that word. My parents flew in from WA state for the Christmas holiday and they were amazed at the progress he had made since their visit 6 months prior. He had a great time with gma and gpa and was even teaching them some sign language.

January 2012- Near year and new adventures. Mikey’s pediatrican wants a neurological exam done and that will 100% give us an official diagnosis. We did not get in for an appointment until May 8th. We waited nearly 4 months for an opening. During this wait we notice he isn’t sleeping very well if it all. Melatonin is tried and it works off and on. Mikey likes to set his own rules and beat to his own drum. If he wants to sleep he will sleep if he wants to be awake he will lay awake all night never leaving his bed.

The big day finally arrives, May 8th. Our appointment with the neuropsychologist. Long story short…Mikey scored off the charts cognitively but he was classified as having High Functioning Autism. He is very bound by rules and if something works one way one time it has to work that way each and every time. There is no deviating from routines with Mikey. He will remember something he did or got weeks ago.

For example, when we go to the pharmacy they always have dum dum suckers. He has not been at the pharmacy in probably a good 3 months. Well when we were there a few days ago he threw a fit because they did not have any suckers. He was suppose to get a sucker because every other time he has gotten one. I dragged him away kicking and screaming and head across the clinic to his appointment for his ears. He continues to carry on and I basically get called a bad mom because I can not control my child’s behavior. I quickly put the rude person in her place. 

We are currently enjoying our summer and preparing for our upcoming vacation. Mikey will be going back to school in August with a fresh IEP and goals to work on. There is a chance he will be bumped to the afternoon class. He walks around the house singing his ABC’s at least 100 million times a day, if it’s not the ABC’s it him counting to 10. He did a month of horse therapy and LOVED it!! Our weeks are filled with good days and bad days and I know that we have nothing but exciting adventures ahead of us. Mikey has taught me a lot in only a few short years and I look forward to learning something new with him every day.Image