We have all seen it...the kid on the floor in the grocery store screaming, crying and kicking. A temper tantrum because he or she did not get what they wanted. Was it really a temper tantrum? Maybe this child is on the spectrum and is having a sensory overload meltdown. Remember that children on the spectrum are often hypersensitive to sounds, smells, lights among other things. My own son takes pride in the fact that he smells things others cannot smell. One of his "things" is superheroes, so he thinks of his super sniffer as his superpower.
Below is a video of what it is like to be in a grocery store when you are on the spectrum (I was sick to my stomach within 30 seconds...imagine not being given the choice to turn it off):
https://www.youtube.com/watch?v=IcS2VUoe12M
If you are having trouble with your child having a meltdown at the store, here are some videos that may give you some hope and a few ideas:
https://www.youtube.com/watch?v=qMi7SPtIM7U
https://www.youtube.com/watch?v=SASrwFkbmOk
https://www.youtube.com/watch?v=I39WBqJI8AY
So...since we know kids on the spectrum love their routines, we need to work shopping into that routine. Sit down with your child and create a shopping list. Prepare the child with sensory stimulation to help soothe him/her. If your child is particularly sensitive to noise, have them wear headphones if they will allow it or if the sensitivity is to light, have them wear sunglasses. Map out your grocery store trip based on your list. As you put each item in the cart, cross it off the list so your child will know how long they can expect to be in the store. Engage your child in helping you put the items in the cart to keep them busy. It may be a situation where you start by going in the store for a minute and then leaving, gradually working up the number of items you can purchase (aka time spent) in the store. The most important thing is that you work with your child and teach him/her how to deal with the sensory overload. Do not allow people who are ignorant of the situation or just in general to make you feel like less of a person or a parent.
Sensory overload and meltdowns can happen other places besides the grocery store. They can happen at school, in a restaurant; and with the holiday season coming up, a meltdown is almost inevitable. My son, who has Asperger's, knows enough to tell me during family get togethers when he has had enough. When we are hosting, he will get my attention and then point upstairs to his room. He then goes up there for some calm down time. If we are at an event, he will go into a quiet room (most of our friends and family are aware of this) for some time.
Here is a list of things I have found to be helpful to ward off the meltdown:
1 - Have a box/bag of sensory stimulating things (stress ball, headphones, etc) on hand at all times.
2 - Have a weighted blanket, compression vest, gloves or whatever your child feels comfort from.
3 - Pre-activity preparation - who will be there, how long with the activity last, what is expected from
the child, what kind of noise, lights, etc.
4 - Plan an escape for your child. Discuss with the party host about a place your child can go if
he/she starts to feel anxious. Discuss this with your child (if able) and decide on a signal.
5 - Massage - don't we all dream of it to relax?
6 - Get down on child's level and whisper.
7 - Tight hugs from behind.
8 - electronic device for communication
I hope you find these suggestions helpful. Remember, having a child on the spectrum is not a prison sentence. Your child can and should be socialized. Your job is to learn what his/her triggers are and how to calm him/her. It is a learning process. You will make mistakes. Meltdowns will happen in public. People will stare and even comment. It is their problem, not yours. I have been there and even still have an experience (my son is 19). Instead of feeling like a bad parent, feel like a good teacher and teach the public about life on the spectrum. Ask for help. You and your child both deserve it. The holidays are for friends and family, and that includes your child.
Tuesday, December 9, 2014
Saturday, November 29, 2014
No two puzzle pieces are the same...
Just like the pieces of any puzzle, kids on the spectrum are different. So why is it so many of them are placed into the same classroom or held to the same standards? Some kids love to read, although they may have to stand to do it. Some kids would rather do just about anything else than read. Some of them wander, some of them do not. Some of them hate to be touched, some of them are comforted by it. The list goes on and on...
As a parent of a child on the spectrum, it is easy to get overwhelmed both with the situation itself and by the wealth of information available on the subject. What has worked for my family is really defining my son's likes and dislikes, his strengths and weaknesses and then go from there. Take notes about everything.
** Do certain foods make my child act differently? Could it be an allergy? Will your child not
eat certain foods? Why? color, texture, strong smell/taste?
** If your child is acting out in a particular classroom or at the same time every day, look at the
environment...is the sun shining on his/her desk? is there a radiator or fluorescent light
making noise? Is the teacher wearing perfume? Does the desk not sit level? This is the time
to think outside the box. If your child is verbal...ask him/her if there is something that is
irritating to them.
** If your child has trouble sitting still, what kinds of things will help comfort him/her? Explore
fidget balls, scratchy material mounted under the desk, a weighted blanket, or whatever works
for your child to calm their sensory issues.
Find and work with an occupational therapist with experience with kids on the spectrum to
determine what works for your child.
** What if your child wanders? Are they able to give information to strangers? Are they able
to keep themselves safe from accidents in traffic, etc.? What safety measures can you put
in place in your home (alarms on doors, locks with keys, etc.) and in your neighborhood
(notify first responders with picture ID and vital information, notify neighbors). Consider
having your child wear a medical ID bracelet. First responders are trained to react to these.
If your child is in school, what is the school's protocol for wandering children?
** How does my child learn? Some children learn by reading, and some learn by doing. This is
whether they are on the spectrum or not. When it comes time for your child to go to school,
have a frank conversation with the educators about how your child learns and demand that
they allow your child to learn his/her own way. If that means they walk around while reading,
so be it. If they need to move beads to do math, so be it. Education is about having the
child learn. It's not about having everyone put into the same box and hoping for the best.
This is just the tip of the iceberg. Some kids need a therapy assistant to get them through a school day. Some kids need a therapy dog 24/7. Some kids have adaptive devices like iPads. Some kids have weighted vests to calm themselves. The world is at your disposal. There are countless apps available for autism education, therapy, etc. There are pins on Pinterest about anything you can imagine from occupational therapy, stimming, meltdowns, to sensory stimulation, fidget boxes, calm down kits, etc. Trial and error is the name of the game. Patience, persistence and the realization that you are human. You are going to make mistakes. You will get through it. As Taylor Swift says "Shake it Off" and move on to the next thing.
As a parent of a child on the spectrum, it is easy to get overwhelmed both with the situation itself and by the wealth of information available on the subject. What has worked for my family is really defining my son's likes and dislikes, his strengths and weaknesses and then go from there. Take notes about everything.
** Do certain foods make my child act differently? Could it be an allergy? Will your child not
eat certain foods? Why? color, texture, strong smell/taste?
** If your child is acting out in a particular classroom or at the same time every day, look at the
environment...is the sun shining on his/her desk? is there a radiator or fluorescent light
making noise? Is the teacher wearing perfume? Does the desk not sit level? This is the time
to think outside the box. If your child is verbal...ask him/her if there is something that is
irritating to them.
** If your child has trouble sitting still, what kinds of things will help comfort him/her? Explore
fidget balls, scratchy material mounted under the desk, a weighted blanket, or whatever works
for your child to calm their sensory issues.
Find and work with an occupational therapist with experience with kids on the spectrum to
determine what works for your child.
** What if your child wanders? Are they able to give information to strangers? Are they able
to keep themselves safe from accidents in traffic, etc.? What safety measures can you put
in place in your home (alarms on doors, locks with keys, etc.) and in your neighborhood
(notify first responders with picture ID and vital information, notify neighbors). Consider
having your child wear a medical ID bracelet. First responders are trained to react to these.
If your child is in school, what is the school's protocol for wandering children?
** How does my child learn? Some children learn by reading, and some learn by doing. This is
whether they are on the spectrum or not. When it comes time for your child to go to school,
have a frank conversation with the educators about how your child learns and demand that
they allow your child to learn his/her own way. If that means they walk around while reading,
so be it. If they need to move beads to do math, so be it. Education is about having the
child learn. It's not about having everyone put into the same box and hoping for the best.
This is just the tip of the iceberg. Some kids need a therapy assistant to get them through a school day. Some kids need a therapy dog 24/7. Some kids have adaptive devices like iPads. Some kids have weighted vests to calm themselves. The world is at your disposal. There are countless apps available for autism education, therapy, etc. There are pins on Pinterest about anything you can imagine from occupational therapy, stimming, meltdowns, to sensory stimulation, fidget boxes, calm down kits, etc. Trial and error is the name of the game. Patience, persistence and the realization that you are human. You are going to make mistakes. You will get through it. As Taylor Swift says "Shake it Off" and move on to the next thing.
Tuesday, November 18, 2014
Our Story
My pregnancy was pretty uneventful, and I had previously delivered a 9-lb healthy girl at term, so when I went into labor at 35 weeks, I didn't think too much about it. I remember that summer being really hot, and it was only June. If I didn't have to go through July with swollen feet and ankles, win one for the momma!
It wasn't until we got to the hospital and the doctor said trying to stop the labor was an option that I even gave it a second thought. A few minutes later, we would find out that I had already reached the point of no turning back and we would have to "deal with whatever situation presented itself." My labor was fairly short, about 4-3/4 hours, and very uncomplicated. The neonatal team was on hand, and we found out pretty quickly that my son's "plumbing" worked very well. We got to meet him for a few minutes, and he was the whisked away to the NICU. He had Apgar scores of 9 and 9, and I remember looking at his fingernails and being relieved that they were fully developed. He was in the NICU for about 8 hours and then brought to me. He was 6 lbs, 6 oz at 35 weeks gestation, but he had no muscle tone and no suck reflex. He would not eat.
We were both sent home the next day. He developed jaundice and still was not eating. Eventually, he did start eating, but he developed reflux. I would hand him to the daycare worker and he would promptly projectile vomit. He failed to hit milestones at the "normal" times. He was not growing. I even had a pediatrician threaten us with Child Protective Services. He developed eczema and asthma. The pediatrician did not acknowledge that infants could have asthma, so he was not given preventive medication. I eventually switched pediatricians at the advice given in a hushed tone by one of the physicians assistants at the previous office, whom I am grateful to still. By the time my son was 2-1/2, he still did not speak. He had almost constant ear infections even though he was on a preventive antibiotic. We started intensive speech therapy at age 3 and he still has it today at age 19.
My son went to a school for children with speech delays when he was 5 years old. He was transitioned to our regular elementary school, and that's when the real issues began. He could not sit still. He was disruptive in class. He ran everywhere. He was not getting on well with others. He still was not talking much at all. He went on medication for ADHD, but he refused to swallow pills. That meant finding a food we could hide the insides of the pill in. We finally settled on Easy Mac. Yes...my son ate Easy Mac for breakfast every morning. The medicine worked pretty well to keep him on task, but it took his appetite completely away. We used to keep him off the medication over the summer just so he would grow. When my son was in third grade, we sat with his teachers and special education folks at a grand table much like I can imagine the Knights of the Round Table sitting around. They suggested that my son might be on the autism spectrum. After I picked myself up off the floor, I listened as they went through all the possibilities. We unofficially used that diagnosis throughout the rest of his elementary days.
When my son was in middle school, we moved to a new district. He did reasonably well with the transition. I guess when you have very few friends where you came from and are really not that interested in making new friends, the transition is not that bad. This new school district did not offer the same level of special education as we had before. We met with a school psychologist who looked us in the eyes and told us our son did NOT have any form of autism simply because he could maintain eye contact. Umm...guess she didn't read the file cabinets full of therapy notes focused on making him do such things. She told us we could take him to another doctor, who would diagnose him as on the spectrum, but that just simply would not be the case. Again, I was picking myself up off the floor. My son had great struggles in middle school that we now have discovered was mostly from pure frustration. His vocabulary was minimal at best, but he had all of these thoughts racing around in his head. He vented those frustrations through misbehavior. Other kids were starting to pick and bully him, but he would never speak up for himself. His last year of middle school, we met with the new school psychologist, who told us to completely disregard what we had been told before. She agreed that our son was on the spectrum, and she would be completing the paperwork to make it official with our stated education department. I was now overwhelmed with the programs and services he was able to receive. Where has this been? Oh well....better late than never.
Once our son got to high school, things were really starting to fall into place for him. He was in the correct learning environment, he was receiving therapy, they were focusing on teaching him how to live independently. My son also loves music, and he joined the high school marching band. I hung around because band was an activity I was very familiar with, and I was able to make a lot of new friends. I asked his instructors to inform the other students of Zach's diagnosis, not as an excuse but as an explanation. For the most part, the other band kids would support him and he flourished as a result.
My son graduated from high school in June 2014. I never thought we would get to that point. Each year, we would have to fill out a skills assessment test for the learning support teacher. I would look at that and sob because there were so many things he could not do. Now, I look at that same form and cry because of all the things he CAN do. My son now works part time in the wee hours of the morning loading Fed Ex trucks. He then goes to a high school extension class 3 days a week and to our local community college for a transitional class between high school and college. I no longer fear leaving him for the day at home. Our next project is working toward getting his driver's license.
This story is long and involved. I apologize for that. I tried to hit the highlights of our journey through the spectrum diagnosis. My son still struggles with social cues and maturity, but he is light years ahead of where I ever allowed myself to dream he could be. We never gave up on him. We forced him to behave in a manner just like "normal" children. It was hard work. I cried thousands of tears. I screamed, I asked why me. Now, I look at where we are, and I feel overwhelming pride and joy. My son has recently found his sense of humor, and he is a riot.
You can do it. You can love your child through the journey. You can go to battle with the diagnosis, with the school, with the doctors. Go to battle with anyone standing in your child's way. The sky is truly the limit if you are willing to work for it.
It wasn't until we got to the hospital and the doctor said trying to stop the labor was an option that I even gave it a second thought. A few minutes later, we would find out that I had already reached the point of no turning back and we would have to "deal with whatever situation presented itself." My labor was fairly short, about 4-3/4 hours, and very uncomplicated. The neonatal team was on hand, and we found out pretty quickly that my son's "plumbing" worked very well. We got to meet him for a few minutes, and he was the whisked away to the NICU. He had Apgar scores of 9 and 9, and I remember looking at his fingernails and being relieved that they were fully developed. He was in the NICU for about 8 hours and then brought to me. He was 6 lbs, 6 oz at 35 weeks gestation, but he had no muscle tone and no suck reflex. He would not eat.
We were both sent home the next day. He developed jaundice and still was not eating. Eventually, he did start eating, but he developed reflux. I would hand him to the daycare worker and he would promptly projectile vomit. He failed to hit milestones at the "normal" times. He was not growing. I even had a pediatrician threaten us with Child Protective Services. He developed eczema and asthma. The pediatrician did not acknowledge that infants could have asthma, so he was not given preventive medication. I eventually switched pediatricians at the advice given in a hushed tone by one of the physicians assistants at the previous office, whom I am grateful to still. By the time my son was 2-1/2, he still did not speak. He had almost constant ear infections even though he was on a preventive antibiotic. We started intensive speech therapy at age 3 and he still has it today at age 19.
My son went to a school for children with speech delays when he was 5 years old. He was transitioned to our regular elementary school, and that's when the real issues began. He could not sit still. He was disruptive in class. He ran everywhere. He was not getting on well with others. He still was not talking much at all. He went on medication for ADHD, but he refused to swallow pills. That meant finding a food we could hide the insides of the pill in. We finally settled on Easy Mac. Yes...my son ate Easy Mac for breakfast every morning. The medicine worked pretty well to keep him on task, but it took his appetite completely away. We used to keep him off the medication over the summer just so he would grow. When my son was in third grade, we sat with his teachers and special education folks at a grand table much like I can imagine the Knights of the Round Table sitting around. They suggested that my son might be on the autism spectrum. After I picked myself up off the floor, I listened as they went through all the possibilities. We unofficially used that diagnosis throughout the rest of his elementary days.
When my son was in middle school, we moved to a new district. He did reasonably well with the transition. I guess when you have very few friends where you came from and are really not that interested in making new friends, the transition is not that bad. This new school district did not offer the same level of special education as we had before. We met with a school psychologist who looked us in the eyes and told us our son did NOT have any form of autism simply because he could maintain eye contact. Umm...guess she didn't read the file cabinets full of therapy notes focused on making him do such things. She told us we could take him to another doctor, who would diagnose him as on the spectrum, but that just simply would not be the case. Again, I was picking myself up off the floor. My son had great struggles in middle school that we now have discovered was mostly from pure frustration. His vocabulary was minimal at best, but he had all of these thoughts racing around in his head. He vented those frustrations through misbehavior. Other kids were starting to pick and bully him, but he would never speak up for himself. His last year of middle school, we met with the new school psychologist, who told us to completely disregard what we had been told before. She agreed that our son was on the spectrum, and she would be completing the paperwork to make it official with our stated education department. I was now overwhelmed with the programs and services he was able to receive. Where has this been? Oh well....better late than never.
Once our son got to high school, things were really starting to fall into place for him. He was in the correct learning environment, he was receiving therapy, they were focusing on teaching him how to live independently. My son also loves music, and he joined the high school marching band. I hung around because band was an activity I was very familiar with, and I was able to make a lot of new friends. I asked his instructors to inform the other students of Zach's diagnosis, not as an excuse but as an explanation. For the most part, the other band kids would support him and he flourished as a result.
My son graduated from high school in June 2014. I never thought we would get to that point. Each year, we would have to fill out a skills assessment test for the learning support teacher. I would look at that and sob because there were so many things he could not do. Now, I look at that same form and cry because of all the things he CAN do. My son now works part time in the wee hours of the morning loading Fed Ex trucks. He then goes to a high school extension class 3 days a week and to our local community college for a transitional class between high school and college. I no longer fear leaving him for the day at home. Our next project is working toward getting his driver's license.
This story is long and involved. I apologize for that. I tried to hit the highlights of our journey through the spectrum diagnosis. My son still struggles with social cues and maturity, but he is light years ahead of where I ever allowed myself to dream he could be. We never gave up on him. We forced him to behave in a manner just like "normal" children. It was hard work. I cried thousands of tears. I screamed, I asked why me. Now, I look at where we are, and I feel overwhelming pride and joy. My son has recently found his sense of humor, and he is a riot.
You can do it. You can love your child through the journey. You can go to battle with the diagnosis, with the school, with the doctors. Go to battle with anyone standing in your child's way. The sky is truly the limit if you are willing to work for it.
Thursday, November 13, 2014
Autism Spectrum diagnosis...It is not the end of the world
There is no preparation for it. It hits you like a runaway steam engine. You have tried to prepare yourself. You have seen the warning signs. Still...there truly is no preparation. Your child has been diagnosed with an Autism Spectrum disorder. You may feel alone, overwhelmed, lost, depressed, or all of the above. The most important thing to remember right now is that you are ALLOWED to feel this way. You are allowed to feel any way you want. However, it is critically important for you to have a support system. This can be your spouse/significant other, parents, friends, or whomever you choose, but you need someone.
Just a little bit of background. I am not a professional in the field. I am a mom whose son was diagnosed with Asperger's and severe ADHD. He is now 19 years old and on his way to becoming a productive citizen. It was hard work and a team effort, but he is getting there. That being said, I see parents who are struggling with the diagnosis, the therapy and the process in general. This blog is intended to share our journey and hopefully help others in the process.
Things to remember:
** It is OK to mourn the loss of who you dreamed your child would become. When we are expecting, we have thoughts and dreams of our little ones become athletes, surgeons, or CEOs. When dealt a diagnosis, such as autism spectrum disorder, those thoughts and dreams can become dashed. Allow yourself to mourn the loss of those thoughts and dreams. The important thing is to create new dreams for your child as you navigate the spectrum.
** It is NOT your fault. Clinical researchers have only theorized about a few scenarios that could be contributing factors (www.nationalautismassociation.org). Do not beat yourself up thinking about what if or shoulda, woulda, coulda.
** Do not let this diagnosis dictate who your child will become. Had you told me just a few short years ago that my son would be working part time, going to school part time and doing an internship, I would have laughed at you and called you crazy. However, here we are, and he is doing these things.
** Educate yourself: Research your child's specific diagnosis. Research treatment options. Research therapy and education options. Each child is different. Their symptoms are different. Their reactions are different. They learn differently. Do not allow the school district to lump your child into a classroom where only one method is taught.
** Know your rights: Research your rights, as well as your child's. Do not fear the school system. You are your child's advocate and voice. Become a warrior for your child.
** Learn what causes meltdowns if your child has them...and learn to prevent them. Learn what calms your child once the meltdown starts.
These are just a few things to think about as you start to navigate the ocean that is "The Spectrum." Feel free to comment, ask questions, etc. You are not alone on your journey!
Just a little bit of background. I am not a professional in the field. I am a mom whose son was diagnosed with Asperger's and severe ADHD. He is now 19 years old and on his way to becoming a productive citizen. It was hard work and a team effort, but he is getting there. That being said, I see parents who are struggling with the diagnosis, the therapy and the process in general. This blog is intended to share our journey and hopefully help others in the process.
Things to remember:
** It is OK to mourn the loss of who you dreamed your child would become. When we are expecting, we have thoughts and dreams of our little ones become athletes, surgeons, or CEOs. When dealt a diagnosis, such as autism spectrum disorder, those thoughts and dreams can become dashed. Allow yourself to mourn the loss of those thoughts and dreams. The important thing is to create new dreams for your child as you navigate the spectrum.
** It is NOT your fault. Clinical researchers have only theorized about a few scenarios that could be contributing factors (www.nationalautismassociation.org). Do not beat yourself up thinking about what if or shoulda, woulda, coulda.
** Do not let this diagnosis dictate who your child will become. Had you told me just a few short years ago that my son would be working part time, going to school part time and doing an internship, I would have laughed at you and called you crazy. However, here we are, and he is doing these things.
** Educate yourself: Research your child's specific diagnosis. Research treatment options. Research therapy and education options. Each child is different. Their symptoms are different. Their reactions are different. They learn differently. Do not allow the school district to lump your child into a classroom where only one method is taught.
** Know your rights: Research your rights, as well as your child's. Do not fear the school system. You are your child's advocate and voice. Become a warrior for your child.
** Learn what causes meltdowns if your child has them...and learn to prevent them. Learn what calms your child once the meltdown starts.
These are just a few things to think about as you start to navigate the ocean that is "The Spectrum." Feel free to comment, ask questions, etc. You are not alone on your journey!
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