It occurs to me that I should stop assuming anyone who reads this blog already knows us. It is time to introduce ourselves.
Hello there :D
My husband and I met in college, where we discovered a love of theatre and each other. Both intelligent over achievers, we knew what our lives would look like the moment we said I do: careers, children, and theatre. We would both have to work hard to give our children what they needed, because both of us tended to bury ourselves in projects to the exclusion and detriment of those we love. It wasn't so much that we dreamed of our 'perfect children' as we assumed what they would be like--a combination of my sass and daddy's rationality, our two children (one boy, one girl) would find academics boringly easy and social interactions with their peers tedious. We would expose them to theatre early in the hopes that they could find 'their tribe' long before we did.
Everything was right on track with our oldest. Our perfect golden child. He was more alert than we expected. His obsession with light (his first word) was more endearing than worrisome, and no one even mentioned to us that the conversations he could have while other children his age were just starting to string sentences together could be a warning sign. We reveled in our beautiful boy, and planned the right time for our perfect girl.
Our perfect girl was twin boys, born just under two months before their brother turned 3. They were dramatic from the very beginning, with feeding and weight gain issues as well as difficulty sleeping. As soon as they started to gain weight, we began asking questions. Repeatedly, we were reassured that we were worrying for nothing--they were sleeping a normal amount, we were just tired parents. Yes, one twin was turning blue on occasion, but every test under the sun had been run and all were negative, so perhaps it was just a quirkiness of his circulatory system. And the fact that my five month old, who I had held and rocked and nursed, had never met my eyes was . . . well, that one was never really explained, I was just reassured that all was well.
By the time they were three, we knew all was not well. No longer were we being told 'you can't compare their speech to the oldest--his speech was advanced'. Now others were agreeing there was a concern. In addition, the oldest had had a horrible time in preschool and was not doing much better in kindergarten--he was detached from others, acting out (behaviors we now know were stimming) and generally unable to fit into the kindergarten classroom. We worked with the school for six months and when they failed to help us, we saw specialists. And that was when we finally got answers:
Our oldest child has Asperger's Syndrome and ADHD
One twin has PDD-NOS (and later diagnosed with vision problems)
The other twin has classic autism and ADHD
Our world was turned upside down, but it also righted. For the first time, someone was saying 'there's something going on here'. Before long, we were blessed to find the second part of that sentence: People who said 'and we can help you'.
Our twins will be seven soon, and they were three when they were diagnosed. We have since worked with the school to create an education tailored to each kid's needs. We have developed a relationship with a WONDERFUL therapy center where we have gotten occupational, physical, and speech therapies, as well as consultations with a child psychologist on social skills and anxiety. We have done vision therapy at another center. And we have built a network of support that simultaneously makes me proud and humbles me. So many people have come together to help our boys and they are thriving.
So, this is our story. This is our story of what worked and what didn't, what we needed and what we didn't. This is the story of college sweethearts who met, fell in love, married, had children, and then finally grew up. This is the story of two people who were honored to be allowed to share the journey of three amazing children.
This is the story of us.
Thank you for joining us on our journey.
Monday, July 28, 2014
The past, present, and future
This is not my first foray into the blogosphere. I wrote quite a bit when the boys were small, right up to and just after diagnosis. About a year ago I decided to get back into it, but I had lost my passwords and could not for the life of me figure out how to get into the accounts!
I have vague plans of copying the relevant posts to this blog, but in the meantime, here they are.
This first blog was mostly for friends and family (before we started using Facebook to keep in touch).
The Barton Boys
And this one was our first foray into awareness. It didn't last long, so there are only a few posts. I had originally intended to help mask the boys' identities with nicknames. We've pretty much decided that's not going to be possible, so we'll have to figure out other ways to protect their privacy.
Raising the X-Men
I hope you find something of value in these stories from our past. It seems like another lifetime . . .
I have vague plans of copying the relevant posts to this blog, but in the meantime, here they are.
This first blog was mostly for friends and family (before we started using Facebook to keep in touch).
The Barton Boys
And this one was our first foray into awareness. It didn't last long, so there are only a few posts. I had originally intended to help mask the boys' identities with nicknames. We've pretty much decided that's not going to be possible, so we'll have to figure out other ways to protect their privacy.
Raising the X-Men
I hope you find something of value in these stories from our past. It seems like another lifetime . . .
Sunday, July 27, 2014
Emergency Bags-Autism and storms, illness, or other catastrophes
The cruelest joke for an ASD family completely dependent on routine is that sometimes, you can't depend on routine. Emergencies happen, and ASD families have considerations that other families don't have--rarely is a Red Cross Shelter prepared to deal with special needs children during an emergency. Ready.gov is a great site for basic emergency preparedness, so be sure to start there. This post lists things that we do that are either above and beyond those suggestions or especially important for our ASD children.
Storm Bags
Storm Bags
Storm bags are important no matter where you live, but the necessities will vary from one part of the country to another. We live in an area where storm usually means we shelter in place, possibly without electricity. These are the things we keep on hand for storms in addition to the basics.
1. Melatonin and Benadryl, as well as prescriptions. I try to keep a small first aid kit packed at all times with at least a week's supply of all prescription medications for the entire family, some cold medicines, the supplements we all take, and benadryl (because at least three of us have allergies that occur suddenly) If you have anaphylactic allergies in your home, an epi pen should also be part of your emergency supplies.
2. Glow sticks. No matter how freaked out my kids are by a lack of electricity, glow sticks make it better. FYI--most are non-toxic, as we found out when we called poison control because someone used one as a chewy.
3. Calming objects. In our house, this includes a soft blanket with at least one tag (taggies blankets aren't favorites, but blankets with a tag are. Go figure), chew tubes or chewelry, and fidgets. Everyone self-calms differently, so just make sure you have what your children need. I also tend to include at least one object they've never wanted before--sometimes, they suddenly want it.
4. Books, games, toys, art supplies. A mixture of new and old. Anything that might keep them entertained in a pinch.
5. Batteries and battery powered lights (both flashlights and 'fun' lights, like a small disco ball).
6. A small supply of favorite foods or candy.
"Go" bags
1. Melatonin and Benadryl, as well as prescriptions. I try to keep a small first aid kit packed at all times with at least a week's supply of all prescription medications for the entire family, some cold medicines, the supplements we all take, and benadryl (because at least three of us have allergies that occur suddenly) If you have anaphylactic allergies in your home, an epi pen should also be part of your emergency supplies.
2. Glow sticks. No matter how freaked out my kids are by a lack of electricity, glow sticks make it better. FYI--most are non-toxic, as we found out when we called poison control because someone used one as a chewy.
3. Calming objects. In our house, this includes a soft blanket with at least one tag (taggies blankets aren't favorites, but blankets with a tag are. Go figure), chew tubes or chewelry, and fidgets. Everyone self-calms differently, so just make sure you have what your children need. I also tend to include at least one object they've never wanted before--sometimes, they suddenly want it.
4. Books, games, toys, art supplies. A mixture of new and old. Anything that might keep them entertained in a pinch.
5. Batteries and battery powered lights (both flashlights and 'fun' lights, like a small disco ball).
6. A small supply of favorite foods or candy.
"Go" bags
These bags are important for people in areas where evacuation is common. In our area, we tend to use these bags most for emergencies--often an injury or illness that requires a trip to the ER and/or a trip to grandma's house.
1. Clean clothes. Usually, I don't have these packed, but I do keep two empty backpacks in our hall closet so they can be packed quickly. I have an index card checklist inside each bag, so that it only takes moments to pack even if I'm panicked. Each card has a name of a family member and a list of what they would need for a single day--shirt, pants, underwear, socks, medication, toiletries. I can't count the number of times I've grabbed these bags and packed them in 2 minutes or less while my husband was on the phone with 911/our pediatrician/my parents. We then toss them in the car, pack the kids, meet my parents to drop off whatever children do not need emergency treatment, and then take the injured/ill child on to be treated. The checklist is very important, less to keep you from forgetting something in an emergency and more to give you something to focus on.
2. Travel toiletry bags. I keep a basket of these packed in our bathroom. The kids' bags have a travel toothbrush, toothpaste, a small bottle of lotion, and a comb. An extra pair of glasses for my son with glasses. Our bags have all of that plus deodorant, hair ties, and a brush for me, as well as a few other personal toiletries. Whether we are going on a planned trip or have an emergency, I just grab a toiletry bag for each person and off we go. This is a great use for free samples, too--one of those flat samples of shampoo and conditioner takes up almost no room in the toiletry bag and feels so much better than hospital or hotel shampoo. I use zippered toiletry bags, but ziplock bags work just as well.
1. Clean clothes. Usually, I don't have these packed, but I do keep two empty backpacks in our hall closet so they can be packed quickly. I have an index card checklist inside each bag, so that it only takes moments to pack even if I'm panicked. Each card has a name of a family member and a list of what they would need for a single day--shirt, pants, underwear, socks, medication, toiletries. I can't count the number of times I've grabbed these bags and packed them in 2 minutes or less while my husband was on the phone with 911/our pediatrician/my parents. We then toss them in the car, pack the kids, meet my parents to drop off whatever children do not need emergency treatment, and then take the injured/ill child on to be treated. The checklist is very important, less to keep you from forgetting something in an emergency and more to give you something to focus on.
2. Travel toiletry bags. I keep a basket of these packed in our bathroom. The kids' bags have a travel toothbrush, toothpaste, a small bottle of lotion, and a comb. An extra pair of glasses for my son with glasses. Our bags have all of that plus deodorant, hair ties, and a brush for me, as well as a few other personal toiletries. Whether we are going on a planned trip or have an emergency, I just grab a toiletry bag for each person and off we go. This is a great use for free samples, too--one of those flat samples of shampoo and conditioner takes up almost no room in the toiletry bag and feels so much better than hospital or hotel shampoo. I use zippered toiletry bags, but ziplock bags work just as well.
3. Important paperwork. I keep three sets of information, and I use large plastic envelopes to store it in. I have an envelope with copies of medical documentation--insurance cards, a list with name, birth date, contact info for primary physician, and all current medications, diagnoses, and treatment providers. I also note on this list anything important that a provider should know if I'm not conscious to tell them--such as that one of my sons has an auditory processing problem and will answer 'yes' to nearly any question, or that I have a life-threatening allergy to penicillin. My second envelope has copies of our identity information--birth certificates, social security cards, drivers licenses, marriage license, passports. We have thankfully never had to use this one, but it's available if we do. I store it in a safe and I have copies at my parents' house as well. Another envelope contains financial information--bank accounts, credit cards, insurance policies. It would be a good idea to include all of these things in a safety deposit box as well as a safe place inside your home. Most of this paperwork is included on the ready.gov suggestions list, but I find that it's even more important for children who can't communicate well.
4. Some cash, change, and an emergency credit card.
In the car
4. Some cash, change, and an emergency credit card.
In the car
These are things I keep in our car, both for emergencies and daily incidents.
1. The envelope of medical information I mentioned above. Everything a provider should need to treat my child is included, so even if I am unavailable my child can still be safely treated.
2. Clean clothes, for everyone. Spilled drinks, illness, an attempted elopement that leaves both child and parent covered in mud--all can and have happened. Sometimes being able to put on a clean shirt is all that stands between me and a meltdown of my own.
3. Snacks. My minivan has a drawer under the passenger seat. I keep graham crackers, peanuts, granola bars, and similar snacks in there. We spend a LOT of time in the car and it's nice to be able to grab a snack instead of takeout.
4. Blankets. Even in summer, my boys use blankets as comfort objects. Beach towels are a great substitute.
5. An emergency key. Fun fact: almost any police or fire department can open a locked car door, but a trunk requires a locksmith. Due to anti-theft systems, most engine keys now require a trip to the dealership. If your keys are locked in your trunk, thrown into a duck pond, or just missing at the bottom of your purse and you can't get them because you have a child in meltdown in your arms, an extra engine key may save you hours. (I also find those coil-bracelet keychains that many bartenders use very useful--my keys are rarely lost when we are out because they're on my wrist or arm)
1. The envelope of medical information I mentioned above. Everything a provider should need to treat my child is included, so even if I am unavailable my child can still be safely treated.
2. Clean clothes, for everyone. Spilled drinks, illness, an attempted elopement that leaves both child and parent covered in mud--all can and have happened. Sometimes being able to put on a clean shirt is all that stands between me and a meltdown of my own.
3. Snacks. My minivan has a drawer under the passenger seat. I keep graham crackers, peanuts, granola bars, and similar snacks in there. We spend a LOT of time in the car and it's nice to be able to grab a snack instead of takeout.
4. Blankets. Even in summer, my boys use blankets as comfort objects. Beach towels are a great substitute.
5. An emergency key. Fun fact: almost any police or fire department can open a locked car door, but a trunk requires a locksmith. Due to anti-theft systems, most engine keys now require a trip to the dealership. If your keys are locked in your trunk, thrown into a duck pond, or just missing at the bottom of your purse and you can't get them because you have a child in meltdown in your arms, an extra engine key may save you hours. (I also find those coil-bracelet keychains that many bartenders use very useful--my keys are rarely lost when we are out because they're on my wrist or arm)
And the Thunder Rolls: Surviving during storms or natural disasters with ASD kids
We opted against network TV in our house, which means we go online for local news and weather. We always know when we need to check the weather channel: our kids reach new levels of crazy when the barometer drops. Anxiety rises and coping skills decrease as the storm gets closer. Here are some tips and tricks we've developed to help us weather the storms.
1. Plan for it. Make lists in advance and keep necessary things on hand. If your area is prone to hurricanes, tornadoes, or other weather that would require shelter in place or evacuation, make sure you are prepared. Get your kids involved in the prep work, and whenever possible do practice runs--you do NOT want the first time your child is in the basement or storm shelter to be during a storm. Even if they don't or can't show it, most ASD kids are very empathic, and will pick up on your stress level. If they have been in the shelter during a 'practice run' when you were calm and organized, they'll be more accepting of it during a storm when you are worried and frazzled.
2. Have storm bags. This is going to vary from one family to another--if you are in a hurricane prone area, then you will have go bags packed. If you are in an area more like mine, where evacuation isn't an issue but we will occasionally be stuck at home, then storm bags will consist more of sanity savers than necessities. (More detailed information on storm bags HERE and on Ready.gov)
3. Charge everything. Ipads, cell phones, rechargeable flashlights. If it takes a charge and a storm is coming, charge it.
4. Recognize storm behaviors. It is SO much easier to deal with an annoying stim if you know what triggered it. If your child has good receptive language, it also helps them for you to put a name to what they're feeling "You seem really upset. I think it's because there's a storm moving in--it makes me feel strange, too" It's important to recognize your own storm behaviors as well--I tend to get migraines or tension headaches when a storm is moving in, which can make me snappish. Being aware of my own behaviors allows me to control them and to sympathize with my boys when their behaviors worsen.
5. Keep them informed. So many times we think we're protecting our children by not telling them things, but for most children this just increases their anxiety. Sit with your children and tell them what's happening. "There is a storm right now. Here, let's look at it on the radar. See, we're here, the storm is coming this way, and the weatherman says it should be over before morning" Keep information calm, age-appropriate, and as not frightening as possible. Answer their questions honestly but reassuringly--"you know, I'm not sure how long it's going to last or how much damage it might do, but we will be safe here in the storm cellar until it passes." or "well, if the storm worsens, then we will get the go-bags you helped me pack last week and drive to the elementary school." Be prepared for questions that seem completely ridiculous to you but will be very serious for your child, such as explaining what will happen to the baby birds nesting in the tree in the yard. If your child is unable to communicate, then do your best to reassure them on the level they understand.
6. Make storm parties a family tradition. We try to keep a few 'emergency items' on hand for storms or other setbacks--a new game or toy, a favorite snack or candy, art supplies, books, even a toy for the family pet will sometimes distract a child just enough to avoid a meltdown. Do family activities (such as board games or reading books). If you are sheltering in place, then turn it into a camp out. If you have to evacuate, treat it as much as possible like a vacation. Take pictures of your family together doing those things to use for future storms.
7. Know your child's triggers and plan for them. One of ours will lose it if they see the trees tossed in the wind--if a storm is coming, we close the curtains. Another has very sensitive hearing; we keep a pair of sound cancelling headphones on hand and plop them on his head with a favorite video if we know there's going to be thunder. We have insulated our home to help dampen sounds, and we tend to choose the most insulated room to gather in during a storm. One of ours gets most upset when things don't work--if he flips a light switch and the light doesn't come on, his world ends :P We are working on a whole-house generator system to help combat this, and in the mean time we have crank and battery operated lanterns for him.
8. Consider safety issues in advance. We have a handful of emergency candles, but due to our fears of fire those are for dire emergency--our basic backup is battery powered and crank-powered lanterns and radios. Many people in our area use fireplaces or even kerosene heaters for backup heat during storms, but we feel that this is not safe with our boys. We have insulated our home so that it retains heat very well--for most of our winter, we could lose power and the house still be warm for 12-24 hours. If there was a severe cold snap, though, we would have to go elsewhere if we lost heat. If you have a wanderer and tend to depend on an electric security system, find out if it has a battery backup and plan other means of security if necessary.
9. Reassure them that the storm WILL pass. Tell stories of past storms, show them the pictures I mentioned taking of your family having fund during past storms. Reassuring a child on the spectrum that this has happened before and they got through it often calms their fears.
10. Keep your own anxieties in check. Children pick up on so much more than we realize. If you treat the storm as a fun break in routine, they will be more likely to do the same.
11. Get through it, at any cost. The only way your child will sleep during a storm is in your bed or the family room? Then do that. The only foods they will eat are chocolate chip cookies? One night won't kill them. Your almost-verbal child regresses to grunts and moans? Calmly reassure them that all will be well, but don't push them back to talking until the storm has passed. Meet them on whatever level they are at that moment. And if, despite all of your best efforts, your child completely melts down, then let them. Reassure them as best you can, keep them as safe as possible, and let them experience their emotions as they can. And remind yourself, as you've already reminded them, that this, too, will pass.
1. Plan for it. Make lists in advance and keep necessary things on hand. If your area is prone to hurricanes, tornadoes, or other weather that would require shelter in place or evacuation, make sure you are prepared. Get your kids involved in the prep work, and whenever possible do practice runs--you do NOT want the first time your child is in the basement or storm shelter to be during a storm. Even if they don't or can't show it, most ASD kids are very empathic, and will pick up on your stress level. If they have been in the shelter during a 'practice run' when you were calm and organized, they'll be more accepting of it during a storm when you are worried and frazzled.
2. Have storm bags. This is going to vary from one family to another--if you are in a hurricane prone area, then you will have go bags packed. If you are in an area more like mine, where evacuation isn't an issue but we will occasionally be stuck at home, then storm bags will consist more of sanity savers than necessities. (More detailed information on storm bags HERE and on Ready.gov)
3. Charge everything. Ipads, cell phones, rechargeable flashlights. If it takes a charge and a storm is coming, charge it.
4. Recognize storm behaviors. It is SO much easier to deal with an annoying stim if you know what triggered it. If your child has good receptive language, it also helps them for you to put a name to what they're feeling "You seem really upset. I think it's because there's a storm moving in--it makes me feel strange, too" It's important to recognize your own storm behaviors as well--I tend to get migraines or tension headaches when a storm is moving in, which can make me snappish. Being aware of my own behaviors allows me to control them and to sympathize with my boys when their behaviors worsen.
5. Keep them informed. So many times we think we're protecting our children by not telling them things, but for most children this just increases their anxiety. Sit with your children and tell them what's happening. "There is a storm right now. Here, let's look at it on the radar. See, we're here, the storm is coming this way, and the weatherman says it should be over before morning" Keep information calm, age-appropriate, and as not frightening as possible. Answer their questions honestly but reassuringly--"you know, I'm not sure how long it's going to last or how much damage it might do, but we will be safe here in the storm cellar until it passes." or "well, if the storm worsens, then we will get the go-bags you helped me pack last week and drive to the elementary school." Be prepared for questions that seem completely ridiculous to you but will be very serious for your child, such as explaining what will happen to the baby birds nesting in the tree in the yard. If your child is unable to communicate, then do your best to reassure them on the level they understand.
6. Make storm parties a family tradition. We try to keep a few 'emergency items' on hand for storms or other setbacks--a new game or toy, a favorite snack or candy, art supplies, books, even a toy for the family pet will sometimes distract a child just enough to avoid a meltdown. Do family activities (such as board games or reading books). If you are sheltering in place, then turn it into a camp out. If you have to evacuate, treat it as much as possible like a vacation. Take pictures of your family together doing those things to use for future storms.
7. Know your child's triggers and plan for them. One of ours will lose it if they see the trees tossed in the wind--if a storm is coming, we close the curtains. Another has very sensitive hearing; we keep a pair of sound cancelling headphones on hand and plop them on his head with a favorite video if we know there's going to be thunder. We have insulated our home to help dampen sounds, and we tend to choose the most insulated room to gather in during a storm. One of ours gets most upset when things don't work--if he flips a light switch and the light doesn't come on, his world ends :P We are working on a whole-house generator system to help combat this, and in the mean time we have crank and battery operated lanterns for him.
8. Consider safety issues in advance. We have a handful of emergency candles, but due to our fears of fire those are for dire emergency--our basic backup is battery powered and crank-powered lanterns and radios. Many people in our area use fireplaces or even kerosene heaters for backup heat during storms, but we feel that this is not safe with our boys. We have insulated our home so that it retains heat very well--for most of our winter, we could lose power and the house still be warm for 12-24 hours. If there was a severe cold snap, though, we would have to go elsewhere if we lost heat. If you have a wanderer and tend to depend on an electric security system, find out if it has a battery backup and plan other means of security if necessary.
9. Reassure them that the storm WILL pass. Tell stories of past storms, show them the pictures I mentioned taking of your family having fund during past storms. Reassuring a child on the spectrum that this has happened before and they got through it often calms their fears.
10. Keep your own anxieties in check. Children pick up on so much more than we realize. If you treat the storm as a fun break in routine, they will be more likely to do the same.
11. Get through it, at any cost. The only way your child will sleep during a storm is in your bed or the family room? Then do that. The only foods they will eat are chocolate chip cookies? One night won't kill them. Your almost-verbal child regresses to grunts and moans? Calmly reassure them that all will be well, but don't push them back to talking until the storm has passed. Meet them on whatever level they are at that moment. And if, despite all of your best efforts, your child completely melts down, then let them. Reassure them as best you can, keep them as safe as possible, and let them experience their emotions as they can. And remind yourself, as you've already reminded them, that this, too, will pass.
Friday, July 25, 2014
New Beginnings
It's been a long time since I blogged, but I think it's time to begin again. It may be slow going--I'll be bringing things over from my old blog (abandoned years ago), posting some things I've shared on facebook, and writing new things. I'm not sure how long it's going to take, but I appreciate each and every person who chooses to share this journey with me.
Follow us on twitter to keep up to date :D @WVAutism.
Follow us on twitter to keep up to date :D @WVAutism.
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