School Challenges Medical Diagnosis

In Illinois, every three years  children are up for IEP review. At my son’s last meeting, I was asked by the school if I would be updating his medical diagnosis. I said that I would and would appreciate any feedback they would have since we last saw a neurophysiologist four years ago. The school gave me paperwork that said they had concerns about speech and attention.

I took my son to the neurophysiologist where he spent all day testing. The doctor then interviewed me, my husband, and collected the school’s report. She said that she would take the testing, reports, and medical history into consideration when making a diagnosis. The diagnosis was Aspergers/ High Functioning Autism, Written Expressive Disorder, Anxiety, Speech Delay, Developmental Coordination Disorder and Sensory Processing.

Upon receiving the diagnosis, I thought the next part would be easy. I would just take it to the school and find the best plan for my son. It was not so. The school disagreed with the diagnosis and told me he didn’t have Autism. They then said ask to conduct their own testing.

Now, I am confused. I have no idea what is going to happen when their results come in. Can an Educational Psyciatrist change the diagnosis? I will let you know what happens! Believe me, I am standing my ground.

Written Expression Disorder

My son was recently diagnosed with a written expression disorder. This is a disability where a child's writing is below normal expectations. Signs of a written expressive disorder include:
- problems with spelling
- difficulty in sentence formation
- print that is large and/or difficult to read
- awkward pencil grip
- avoidance or refusal to complete writing task
- trouble with conventions
- lack of writing endurance
- writing is painful

Due to the difficulties with writing, I asked for some modifications and support. The school gave my son extended time and access to a computer for writing assignments, but said he wasn't low enough to receive occupational therapy services for writing. They also stressed that handwriting is not an important skill these days with the use of technology. They assured me that this skill (even though graded on in school) was not necessary with the access people now have to technology. With technology, it will spell check and even write for you as you speak into a microphone. I was blown away by this response. I realize my child will have access to technology, but is it that bad that I want my child to learn how to write with a pencil and paper?

What is the Worse Thing She Can Tell Me?

Before I went to the results meeting with the neuropsychologist, I was on the phone with my mom. She wanted to prepare me incase I was going to be upset after this meeting. I stopped her from going down that conversation road and told her, "Mom, the doctor will not tell me anything new. This is not our first rodeo. This is the second time we have done this and in-between  these diagnosis test, we have had screenings and evaluations for the past 7 years. I mean what is the worse thing she can tell me?"

My mom then went on to say," You know that the specialists and therapists have told you that he could have Autism. Its kind of 50/50 with him. There is evidence both ways."

I told her," I am aware of that. But, for six years he has been tested every year, and they always say his social skills are too high for Autism. Plus, we did not go to this doctor about Autism, we went to see if he has a visual processing disorder that is keeping him from being more successful in Writing and Reading."

My mom said, "Okay, I just want you to be ready incase today is the day."  I told her that I would be fine, and we hung up.

The meeting lasted an hour. The doctor went over all of his scores which were very similar to last time. His IQ scores were above average, his math scores were above average, his reading scores were low average, and his writing scores were below average.

Then, we discussed the past diagnosis: anxiety, sensory processing disorder, speech delay, and developmental coordination disorder. She went on to tell me that sensory processing disorder doesn't stand alone. It is usually paired with Autism or ADD/ADHD. She told me that she didn't think he had a visual processing disorder. She said, "He has a written expression disorder, ADHD that may be due to his sensory processing, and Asperger's. He is just like a little professor full of knowledge. I know he is going to do amazing things. We just need to give him a little more support to get there."

After that, she talked to me about speech, occupational therapy, social skills groups, and parent support groups, all in which we have done in the past. I told her that he would soon be starting Horseback Riding Therapy again, and she was excited to hear that. We then scheduled to meet again in a year for an update unless anything else came up,  and I left.

The first thing I was asked about hearing this news, "Are you upset?"

The answer is NO. A diagnosis doesn't change who my child is, he is still the sweetest and smartest little boy who craves knowledge. He is still the little boy I fell in love with the fist time I held him and looked at him. The only thing that has changed is a label. But even with that label, I know, just like the doctor said that this little boy will do amazing things!

More Troubes With the School

Getting a diagnosis is a lengthy and expensive process.  For my child, it was ten tests in a six hour period.

After my son spent six hours testing with the neuropsychologist, and  I spent two hours filling out forms, getting old documents copied, and being interviewed by the doctor, the doctor had one request. She needed a teacher from the school to fill out a twenty minute survey to see if my child has ADHD. She needed the forms mailed quickly since our follow-up meeting would be in 10 days.

So I went straight from the doctor's office to the school to give the teacher and extra half day to fill it out. I told my son to give the form with the note to the teacher. The note told her that the paperwork was time sensitive and needed to be mailed in 2 1/2 days. When the teacher saw the note, she told my son she couldn't do it in that time frame and she was sorry. When he came back to my car with the paper, I was furious. Here I am spending $3,000 on this diagnosis and have already gave 8 hours of our time and she couldn't fill out a 20 minute survey!?

I parked my car and went into the office. I told them how important it was that someone in the building: the physical education teacher, music teacher, art teacher, speech teacher, or homeroom teacher fill this out. I told them that I am trying to get this done before his IEP review and I really need the school's input. The office took the paper and promised it would happen.

Two days later, I received an email that the principal taught my child's math class so his teacher could fill out the survey. I am very thankful for the principal taking action and making this happen. I am disappointed in the teacher and that it had to come to this. This just goes to show you that you are your child's greatest advocate. if you stand your ground long enough, things will happen!

Struggles with the School

I wish I could tell you that this journey will be easy and that as long as you have all your paperwork together, your child will get the support he or she needs. But it’s not that simple. You are your child’s best advocate, and you have to fight for them and their rights.

Starting in kindergarten, I was told that my child was functioning just where he needs to be or a little bit below, so he could not get any services other than speech. You see, your child has to be function way below standards to get support. So, kids that are treading and barely staying above water get overlooked. They are the kids that fall into the cracks of this system.

The following year, it finally happened- my child scored low enough. The last day of school came, and with no warning,  I received the report card saying my child was below grade level standards. I knew this day would come. I had been telling the school for two years about the trouble he was having. It is just frustrating that it came without a warning from the teacher.

So when we started second grade, we had an IEP meeting to make changes to the current IEP that was for speech only, and add a little more support. At the meeting, I discussed my concerns for further testing and the school asked if I was going to get an updated diagnosis from the doctor since the last one was from when he entered Kindergarten (three years ago). They said that if I was going to do that, then all the testing would be done by the doctor. So once again, the school wants to wash their hands clean of this and have me take care of it. Hopefully, once all is done, the school will be more supportive.

It is so frustrating at times to know what your child needs and not have the school on the same page. The only thing I can continue to do is help my kiddo the best I can and continue to be in his corner at school. I wish this journey was easier, but even on the hardest days, every second is worth it.

Her Name Is Penny

Meet the teacher went great. I know My daughter is going to have a wonderful year. How do I know? Because she was so excited about a friend. For weeks leading up to school she was nervous because this year we decided to hold her back, so she wouldn't be following her class of kids that she grew to love last year. We decided to do this because my daughter has a summer birthday, and we wanted to give her more opportunities to bloom by being the oldest in her class.

On the way to Meet the Teacher. I told her that I was sure she would find a friend. I knew God would have the perfect little friend for her there. My daughter was very hesitant. But she walked in, met her teachers, and started looking around.

The next thing I knew, a little girl ran up to her. She said, "Hi! My name is Penny. That is P-E-N-N-Y. " My daughter  just looked at her. The little girl went on, "I like bunnies. Can I play with you?" My daughter still stared. The little girl went on, "I want my bunny to go in the cage. Look he fits."

Then the greatest thing happened. My daughter said," My puppy fits too." And my shy little one Who is hesitant to engage with others started playing. I wanted to cry and shout for joy all at the same time.

Coming home all my daughter talked about her new friend Penny. I was so worried about this year, but I fear no more. She found a friend. Thanks Penny!

Left

It has been two weeks into school ( 10 days), and I honestly am dreading this year. The year started out awesome. For the first time ever, my son walked through the doors like a boss. No meltdown! pure confidence. He looked back and blew me a kiss to tell me , "I got this, mom."

Then 5 days into school (two Fridays ago) something changed when he came home. He was upset and scared. I asked him about his day. He told me that he had to go #2 today. It took him extra long in the bathroom because the toilet paper is so thin. Then, he had to figure out the button and zipper on his pants, and wash his hands. He said when he was done, his class was gone. He went back to the classroom. No one was there. He started walking the halls looking for everyone when a hall monitor found him and took him to the office. His teacher was paged and she came to take him to his class which was in PE. By the time he got there, his class was finishing the mile and the coach told him to just run one lap.  He was sad that his class left him, sad that he got in trouble for taking too long, and sad that he missed his favorite class PE.

I told him that I was so proud of him for wiping all by himself. He hates to wipe. He has a huge problem with textures of toilet paper and I am sure the school's thin paper drove him crazy. I also told him that I would talk to his teacher about what happened so he wouldn't get left again.

Monday rolled around and I sent the teacher an email. It had a brief history of my child. I told her that due to his fine motor skills, he may take longer than other children in the bathroom and putting on clothing. I suggested that she let him go first so the class wouldn't wait on him.

She replied and called the whole situation misfortunate and said she would do her best to accommodate his needs.

That day my son came home from school upset again. He told me that he was once again left (however this time with two other students) when changing for PE. His teacher told him he was taking too long and needed to go faster, She couldn't let the whole class be late, so they left and told the other kids to catch up when they were done.

My son told me that he was trying his hardest to go super fast but he wasn't fast enough. He was upset that he was late for PE again. He said that this year is just super hard.

My heart broke. Last year we didn't have these problems. He had an aide in his class that helped him and another little boy. His IEP is up for review this month so I started making calls to the doctor and private therapy place to get my papers lined up to make his days this year better.

Then this last Friday, I get a phone call. The nurse told me that my son walked into the door pole (the one that is in-between the two opening doors) when in line with his class coming in from recess. She was checking him for a concussion and he had a deep gash across his face (not requiring stitches).

I was extremely upset. I still am. I don't know what I am going to do to make this year easier on him. All I know is that I need to figure something out.

Private therapy ( Medical Therapy) Vs. School Therapy

The other day I was asked a great question: "Why would someone do both private therapy and school therapy?"

School therapy and Private therapy meet different needs. A school will only provide therapy if it is academically necessary. Meaning that the school will only provide therapy if the child's disability affects their academics. For example, a child will not receive PT if they struggle with motor skills unless the motor skills keep them from learning. Take my child for example who struggles with core strength and balance. These two things would not count as a qualifier in schools.

The Problem With Public School

Before I was a stay at home mom, I was a teacher. I was always surprised when a child would come into my class so far behind their peers. One year while teaching 5th grade, I had a student that was on a first grade reading level and struggled to write a paragraph. How could a child go through school six years and be this far behind? Recently, I learned the answer to that question.

This week, I wrote my child's teacher and therapist about my concerns. My child is really struggling with spelling. Since he doesn't say his words correctly, he can't sound them out to write them. For example, he wrote, " Ve pewn li to et fis" ( The penguin likes to eat fish). Even though he struggles with writing, he has no problem reading the sentence. I asked them for ideas on how I can help him at home. I asked how they were helping him at school. I also asked how we were going to continue helping his speech this summer.

Here are some highlights of different things I was told: spelling errors are common with children who have articulation difficulties; the best thing I can do is continue to expose my child to words through reading; his writing will get better with time the more he is exposed to words and the more his speech develops; he can not be tested for dyslexia for another three years; they will keep an eye on him; he will continue to work on his writing during centers; the older he gets, the more he will have technology to aid his writing; he doesn't qualify for any services this summer because he is too high functioning ( he must be at least two years behind to receive services).

It was after reading the responses that things clicked. I finally realized the problem with public school. I think that it is absolutely ridiculous for a child to have to fall two years behind before they can receive services. By then, how are they suppose to catch up? It just doesn't seem fair. It breaks my heart for all of these kids that fall between the cracks ( the kids that are functioning below their peers, but too high that they are monitoring for the two year gap). A parent can plead for help, but there is nothing the school will do. The only other answer is to find help for the child elsewhere which ends up costing a lot of money. Many families don't have that option. The most interesting thing about going elsewhere is that you will find out that a medical facility will script a child receiving services at school for more therapy than what the school is offering. My son is scripted four hours of individual therapy a week, but the school will only give him 30 minutes in a group setting.

It also fustrated me that my son's opportunities to better his writing will be done in centers. Centers are for independent activities. How can one develop a skill through a center? Centers are for practicing what you have already developed.

The system really needs to change so that it is helping all kids grow and be successful; so that, one day little Steven doesn't show up to fifth grade on a first grade reading level and struggling to write.  I don't know if things will ever change, but I hope one day it will.

The Day I Saw Fruit From Our Labor

This weekend our church held a Sunday School Program to showcase everything the children have learned throughout the year. Both of our kids had practice their roles many times at home and were so excited. They got dressed in their Sunday best and ran to the children's center that morning. I gave them a kiss and told them that they would do great. Then, I went to get a seat.

I was not prepared for what happened next.

My little girl's class was first. She stood up, smiled big, and with great confidence shouted her line. I was so proud. To see her stand up in front of a crowd next to other children and speak with emotion is huge! Two years ago she wouldn't tolerate even being around two other people and struggled with expression. It was a very exciting.

Then, my son's class lined up. I noticed all the other kids were  looking at my son as he STARTED THE PRAYER. Tears rolled down my face as I saw him do this with great eye contact and expression. It was at this moment that I fully realized that God answered my prayer from five years ago.

I remember that night so vividly. Crying ugly tears and asking God to please restore my child's health and his voice. I remember how hard it was sitting through evaluations and listening to the results. I remember everyday of therapy then and now.

Sometimes you get so caught up in routines that you do not realize the amount of progress since "that day". This weekend was a great reminder to me of how far we have come on this journey. It blows my mind how God can take a little boy who lost his speech to five years later standing in front of his program leading the prayer and a little girl who struggled to connect to two years later standing with her class to do a program in front of a crowd. God is amazing!

I am so thankful. Thankful to God and all of those he has used to do wonderful works in my children.  It is nice to see all the fruits from the labor.

What I Thought I Knew

Before my children, I was a teacher for eight years. I sat in IEP ( Individualized Education Plan) meetings discussing modifications and accommodations the child would have. I followed the plan to a "t". I looked at an IEP plan as helping "level" the field for kids with special needs. I documented and checked off all the things I was doing like extending time, giving fewer choices, reading tests, and moving their seat closer. I never really understood the impact and importance of an IEP for the student and the family until I sat on the other side of the table years later for my own children. I then felt the emotion and frustration a parent feels fighting for their child's needs to be met. I am thankful for the teachers and therapist that show empathy and really want to help. When I do go back to teaching, I will not be the same. I am thankful that my children have opened my eyes to the other side.

You Are Welcome To Make Accommodations At Home

Before the New Year, the school held an IEP meeting for my son. All testing had been turned in from our private therapy facility and extra testing had been done through the schools. They started the meeting by telling me that even though he required four hours of public therapy, through the schools they would only provide what was academically necessary. So, instead of two hours of speech and two hours of occupational therapy, he would receive 45 minutes of speech a week. I was told it wasn't academically necessary for him to receive any OT. When I argued and said, "But, he can't button and zip his pants and has trouble dressing himself when he uses the restroom." They told me to make accommodations at home, so that, this wouldn't be a problem at school. The OT told me,"Send him to school in elastic pants, so it won't be a problem. Many students wear them."

So, my son started receiving speech services after the holiday, and I started making accommodations at home. Everyday I send him to school in clothes that will not cause a disruption, and he will he successful in until Wednesday. Wednesday temperatures were below zero. I had to send him to school in a snowsuit. Because he couldn't take it off quickly, he got a tardy. Then, he caused his class to be late at dismissal because the teacher had to put it back on him. When I went to pick him up, his teacher told me that if I send him to school in clothing that he can't manage, I need to come in to help him take it off and put it on because she has 24 students and can't help him.

I understand that teachers are busy. I do. I taught for eight years. This to me should be a red flag that yes it is academically necessary to give this kid occupational therapy. What if, I wasn't available to help my son? Would he not receive the help he needs? The system really frustrates me, but I know the system well. I know for any change to occur I must document everything. Still I am not sure if that will even be enough. It's hard when your kid is one of the ones that falls in the cracks ( not low enough to receive services but still needs help). I am just thankful that I am a mom that can accommadate and be there.

Starting Over In a New State

Recently, we moved to a different state and started the process to qualify for therapy again. One of the hardest things about moving is starting this process over. Each state has their own testing and requirements. The fastest way to do this is through private therapy. Once a new doctor has put in a script, you pay fees for new evaluations. This process can be costly. For example, it was $600 for each child to receive a ST, PT, and OT evaluation. Since we have not reached our deductable, this was an expense out of pocket. Once we found out that we did qualify, we also found out that insurance was not going to really help us (for the 7 hours of therapy at $200 an hour). We then turned to the schools to help our children with therapy. Testing through the schools took three months. They took the evaluations from private therapy, but added their own testing as well. Then, it was followed by the IEP process before we could start. We moved here mid-August and my kids are starting therapy in the new year. I am excited that it is finally happening, but exhausted by the whole process. The schools are also only giving my children speech. Where as, in private they qualified for speech and occupational therapy. Right now, we are going to take what we can get and call it a win.

Forgiving Others

The weather was amazing today, so I decided to take my kids to the park. After launching rockets with our rocket launcher, the kids wanted to go play on the playground. I watched both of them run and climb up the rock wall to the top of the tower. They then crossed a bridge and went down the slide. As they began to climb up the playground again, another family joined us. The other mom was pushing a stroller with a baby and toddler while her older three boys walked beside her (One of her boys was close to my son's age. The other two were a few years older). The mom then sat on the bench and the kids ran to play as she called someone on her phone.

My son was ecstatic that "friends" we're there. He ran over to them and started talking to them about playing a game. As I helped my other child up a ladder, I heard the oldest boy ask my son, "What's wrong with the way you talk? Do you want to marry a boy or something?" My son said, "Nothing's wrong." Then started moving closer to them. The boys started running away from him. My son thought it was a game of chase. The older one said, "Stay away." My son continued thinking it was a game and went after them.

My momma heart was so upset and angry. I told my kids it was time for dinner, and we had to go. My son waved bye to the boys as we left. His innocence made it even harder. In the car, my son asked why I was mad, and if he was in trouble. I told him I was mad at the boys for being mean. I told him he wasn't in trouble, and I was proud of him for making friends (socialization/ friend making has been something we have worked on). I left it at that.

Later, as we prayed, my son prayed for his new friends to be nice to people. Then he thanked God for friends.

Tonight as I sit here, I know I have to forgive these boys. They are just children. The little ones were following the example of the older one. The older one has learned a lack of compassion and acceptance from somewhere. It might be from a lack of parenting since mom was on the phone, or observation from others in this world. This child has no idea how thankful I am that my child has a voice. He doesn't know how I cried and prayed for my child to speak again once he lost his voice. He has no idea how many therapy hours we have been through to get where we are today. And even if he did, he is a child and most likely wouldn't fully understand the harm of his words. I wish at that moment I wouldn't have been so angry. I wish I could have talk to him about love and compassion. I hope someone in his life does. 

But for tonight, I am thankful that my child did not understand what this child was saying and doing. I am thankful that my son thought it was just a game. I am thankful for his innocence. At the same time, I worry. I worry about the day when he does understand when others are mean to him. I know that day will break my heart even more. 

But tonight, I let go. I forgive.

Down Syndrome, A Blessing

Before I was born, my grandmother gave birth to an adorable brown eyed boy. She named him, George, after his father. At one of his first check ups the doctor confirmed that baby Georgie had Down Syndrome. The doctor gave her options and even asked her if she wanted to keep the baby. Even though she knew the road ahead would not be easy, she wanted to take it.

 My grandmother to this day would tell you that Georgie is one of the best things that ever happen to her. He taught her that life doesn't have to be perfect and that there is always a reason to celebrate. When my grandmother was left a widow, Georgie gave her reason to keep going and has been her companion.

Georgie not only has blessed my grandmother's life but has affected everyone in our family. My mom developed a love for special needs children and became a special needs teacher. All of Georgie's nieces and nephews have developed great compassion, love, and understanding for the special needs community.

Our family would not be the same without Georgie. We are so thankful that God blessed us with him and gave us reasons to celebrate each day.

Sensory Processing Awareness

I remember when I started noticing things going on with my child. When other people noticed too, I was the queen of excuses. I loved saying he was shy when he would crawl into a quiet space on the playground to hide. I wanted to believe others when they said it was just a phase, but something in my heart knew that we needed help.

The therapist helped me work through my feelings and taught me how I could best help my child. A big part of helping my child was education. Reading about Sensory Processing Disorder and becoming an expert has helped me advocate for my child and get his needs met.
This month is Sensory Processing Awareness month. Here are some basics about the disorder:

All kids with Autism have Sensory Processing Disorder, but not all kids with SPD have Autism; some might have anxiety, ADD/ADHD, or behavior disorders. SPD can cause developmental delays. Children with SPD when overstimulated will respond with flight (run away), fright (freeze), or fight (hit, bite, kick, yell). They are not bad or misbehaving children. They are trying to deal with everything going on around them. Children with SPD do not grow out of it. It is not a phase, but with therapy and intervention, children can learn coping strategies and get help on how their body responds to taking in sensory information.

Some signs of Sensory Processing Disorder include: having trouble focusing, complaining about light or shielding eyes, chewing on everything or mouthing things, handwriting struggles or poor fine motor skills, sitting in W position, moving clumsily or coordination/gross motor difficulties, hearing everything too loud or wanting to play sound too loud, clothing hurts or wants clothes tight, eating difficulties ( gags on different textures or picky eater), hearing difficulties, and touching others too hard or avoiding touch.

A person with SPD will not show all of these signs. There is a large spectrum of this disorder. It can look different on different people. Some are sensory seekers, others are sensory avoiders, and some are both.

If you know in your heart something is wrong, I encourage you to talk to your doctor or occupational therapist. The sooner you get help, the faster your child can learn how to self regulate their system.

Developmental Coordination Disorder

When my son was three, we were told he was of age to get a formal diagnosis. We went to a developmental center where he was given extensive tests by specialists. One of his diagnosis was Developmental Coordination Disorder.

Developmental Coordination Disorder also known as DCD is a neurological disorder. It is common in Sensory Processing Disorder and affects motor planning and coordination. One big struggle he had was putting movements together. For example, he could kick a ball if he was standing still, but struggle with running to kick a ball. He would trip when running or he would miss the target. When he went after a ball, it would remind me of Charlie Brown running to kick a football. My son had bad timing, poor balance, trouble coordinating steps together, and trouble with spatial awareness.

Upon getting this diagnosis, we increased his time in Physical Therapy. For three years he worked hard developing strength, coordination, and balance. Recently, he tested out of Physical Therapy. Even though he still struggled with some tasks, he has shown amazing improvement.

Today when I picked him up at school, his class was finishing PE. The task was running a mile. I got to watch my son in perfect running form cross the finish line first. Yes, you heard me right, FIRST! I was in tears. I was just so proud. What a testimony this little miracle boy is! He certainly is an overcomer destined for greatness.

Try Something New Everyday

One thing that my children struggle with is change. Change is what causes their anxiety and meltdowns. One thing that our family has done to help our children with change or newness is adopting a saying at our house, “Try something new every day.” Last week my son’s speech therapist said that during feeding therapy, my son encouraged another child to try something new with the saying, “Try something new every day.” It made me smile. Here is a list that we have gone over with our children to encourage them to try a change or new thing:

·        Meet a new friend

·        Say hi or talk to a new person

·        Try a new food

·        Go to a new place

·        Explore a new activity

·        Try a new hobby

·        Watch a new show

·        Play with a new toy

·        Try on different types of clothes

·        Read a new book

·        Add something new or take something out of your schedule

Encouraging our kids to try new things has helped us explore the word change in a positive light. I hope this idea will help your child too.

Sometimes, We Just Need a Change of Environment

When most kids hear summer break, they get super excited. For my son, it is scary. Summer break means a new schedule with new activities and new people. The change is too much. Last summer, it took him a full month to lower his anxiety, stimming, and meltdowns. By the time he loved summer, we had to prepare for school to start. Too bad he can’t be in year round school.

The hard part about summer time is that people are coming and going due to vacations and most activities are flexible with different kids each week. For a child that struggles with change this is a nightmare.

This week, we walked into gymnastics and my son immediately was covering his ears and yelling too loud. I asked him what was too loud. He couldn’t tell me. All I heard was some people talking. I took off his shoes and socks. Then he said, “Too many people. “ There were only five kids in the gym, so I think he meant too many new people since we did not know any of them. He then ran under and chair, started making noises and rocking. I pulled him out, and told him I would go into the gym with him. I could feel his little heart racing.

We went into the gym and my almost six year old sat on my lap. I gave him deep pressure hugs. The teacher asked him to say his name and do a trick. All he could do was make humming noises. It is like the language won’t come out when he has reached this stage of anxiety. He couldn’t move either. After all the kids introduced themselves, the coach got my son to sit with him. I went out to the observation room. About a minute later, my son was next to me. I asked him if it was too much. I told him that we could go home. We said he wanted to stay, but then he curled up in fetal position and started rocking and humming. I could tell that this was escalating fast. I gave him a choice to go into the gym or go home. When he couldn’t choose, we headed home.

This was the hardest day this summer. Most of the time, he will warm up after ten to fifteen minutes and start participating. I look back on the situation and start doubting myself: I should have stayed in the gym with him longer, it is because he is tired from too many activities, I should have let him stim until he was ready (although that might have led to a meltdown if the stimming didn’t calm him). His anxiety did finally calm after crying it out at home. He really needed a new environment where he wouldn’t be over-stimulated.

Yesterday I went over the scenario with our occupational therapist. She gave me a great idea. She said, "Instead of going home to calm him, take him to the bathroom. It is usually quiet there. You wet a paper towel, and put it on his face and arms to give him some calming sensory input. You can also hold him and give him deep pressure. This will help calm him and prepare him for his class."

I loved this idea. Next week, we are going to try it, and see if it helps lower his anxiety. I have also started putting a citrus blend of essential oils on his feel to help with transitioning into summer. Hopefully, our summer will become easier soon.

Self Monitoring: How is Your Engine Running

One thing we work on with our children is self monitoring how they are feeling. This helps them learn how to gain control of their feelings to prevent meltdowns. The self monitoring program we use at home is an ABA tool called “How is your engine running?”

This tool compares your body and the way it is feeling to an engine in a car. When the child’s engine is running low, the child may feel tired, sad, or lonely. When the engine is just right, the child is happy and their body feels good. When the engine is running high, the child might be excited, angry, anxious, scared, or overwhelmed.

To help my kids self monitor with this tool, we made a visual. You can find several examples of these visuals online. It looks like a gauge with a moveable arrow (green- low, yellow- just right, and red- high). 

Once the child is able to recognize their feelings, they can learn how to get in the middle of the gauge to feeling just right. For example, if the child’s engine is low, they might need a nap, hug, crunchy or sour snack, or movement activity to get them to just right. If the child’s engine is high, they might need a break, deep pressure (weighted blanket/ vest), hug, calming music, fidget, or movement.

Using this tool in our house has been a huge blessing. It has helped my children express their feelings/ needs and learn tool on how to self regulate. I hope this tool can help your child too.