Autism and Birthday Surprises

Autism and Birthday Surprises

A few days ago, we celebrated Casey’s birthday and, as always, it’s a time that reminds me just how far she has come in her journey with autism. She was evaluated at a children’s hospital when she was three, but we never got a report from them, despite many, many phone calls. So she was 4 when she officially got her diagnosis.

And here we are – 30 years later! Oh my gosh – to write that makes it sound like an eternity and some days, it felt like it, too. She has gone from barely speaking to able, most of the time, to tell me what she wants or needs. (She really sees no point in casual conversation, though). She has gone from being a runner who could disappear in seconds to being able to go shopping and even look at items on her own (with someone very close by!). She has gone from screaming meltdowns that could last hours to maybe one a year – and she is usually able to calm herself before getting out of control. (Or at least tell me what’s wrong and ask for help before she gets too upset).

She loves going places and will try anything. She still isn’t a fan of crowds, but since I’m not either, that could be a family trait and not her autism. 🙂 She looks people in the eye for a few seconds. Her memory is still amazing – and a little scary at times. (I asked her last summer what year she, Mandy and Rob painted a set of snowmen for me and she knew the day and date.)

Here’s the thing. She still has autism. She still struggles with sleep at times and she will overeat if given the chance. She doesn’t like certain noises and she needs lots of blankets to feel safe. Her sensory needs aren’t as strong as Rob’s but they are there. I’ve heard a few times that she is cured. No – she isn’t. She can’t be trusted to keep herself safe. She has definite needs – but she is also one of the most amazing young women I know.

Casey has always had very definite plans for her birthday. If you look at pictures of her from birthdays when she was little (or even 6 – 7 years ago) it wasn’t often you would see a true smile on her face. She will do a goofy “say cheese” smile but it rarely reached her eyes. She needed everything to happen and she couldn’t be relaxed about it. She opened presents without smiles, she blew out candles without a smile. She ate cake and disappeared in her room away from everyone.

Now, though – she can truly enjoy her birthday. She finally understands that plans can change and the day can be what makes her happy. This year, instead of cake, she wanted cookies and sherbet. So I stuck a few candles in a container of sherbet and we sang Happy Birthday (she sang, too!) to her. She smiled at every present and was excited to get money to go shopping. (Which she has asked about every day since!) She was thrilled with tie dyed PJs and tennis shoes. And she was even happier to discover that she got another “da biggest Cookie Monster” (I think she has 5 now – all the same)

But the best part was to see her excitement with a cream stick for breakfast and Arby for supper (she picks the place) and that she had two parties and all of her family around her. She isn’t afraid of being the center of attention anymore. And that makes this mom so happy. She still has the same sweet smile she had as a toddler and the room lights up when she smiles.

Celebrate all of the little steps that make huge changes in your child’s life. It may take years, but those little steps are just as important as the big ones. Sometimes, we forget that.

Autism and Tips from First Responders (Part 3)

Autism and Tips From First Responders (part 3)

Over the last few weeks, I’ve shared tips from a sheriff’s deputy and firemen about keeping our children with autism safe during emergencies. Today, I’m going to share information from our local EMS director.

He said that all first responders are trained to look for medical ID bracelets when they get to an accident or emergency. Medical ID bracelets can be purchased that state the person has autism with an emergency phone number. The problem is, many of our kids won’t leave bracelets on. You can also buy rubber bracelets of different colors that say the person has autism and this might be something your child would leave on. They could choose a different color every day.

You could also use a necklace with a metal tag instead of a bracelet or you could even purchase a tag that you could attach to your child’s shoes. It looks a little like a dog tag. If you attach it to the shoe with heavy wire, your child won’t be able to take it off. Of course, if you have a child who won’t wear shoes, this won’t be a help, but it’s worth a try when you are out in public and they need shoes on.

Bracelets (both medical and the rubber ones) can be ordered online, as can the tags for shoes and necklaces. I have even seen shirts that are made with a small pocket in between the child’s shoulder blades where you can put an ID tag or attach a note with your name and phone number. I am always surprised by the number of cool things that have been developed for people with special needs.

He also agreed that having seat belt covers for your child is a great idea. One of his tips was to never use your phone number as the emergency contact on the seat belts. I hadn’t thought about this, but if you are the one driving and you are in an accident, it won’t do the first responders any good to call your phone. He advised that you write a close family member or friend’s number on the seat belt covers – someone who doesn’t ride with you often.

Because people with autism often have pica (they put everything in their mouth), he thinks all families should be trained in CPR and first aid. Our EMS is going to train the parents in our area so that might be someone to call if you want that, too. Red Cross often offers classes, too. Also because of pica, make sure you have a poison control number handy at all times. You make think your child “will never” drink or eat something, but you never know. Those few seconds that you save by having the number available could save your child’s life.

Another tip was to always secure large furniture and appliances to the wall. Children with autism have no fear and are often climbers. He talked of one child who opened the oven door and climbed on it to climbed on it to try to get onto the counter. The stove tipped over on him. (I hadn’t thought of the stove tipping over!) So please, use the brackets that come with appliances and make sure anything your child may decide to climb on is secure.

If you have to secure your child’s bedroom at night for their safety, make sure that you can easily get to your child. Think about replacing window glass with plexiglass. (I should have thought of this when Casey put her head through the third window – so thankful she never got hurt!) Cover all outlets with safety covers and consider moving furniture in front of the outlets to prevent the temptation of playing with them. Hide cords whenever you can.

Tell your children what the tornado siren is and where they should go if they hear it. Remind them to stay away from windows during a storm. Make a plan to get everyone to safety in the event of a tornado. I never thought I could get both of them awake and to the basement easily, but they surprised me.

He also shared that one of the best things you can do is to familiarize your child with first responders. Let them see a squad car, a fire truck and a deputy’s car. Take them to meet the deputies, firemen and paramedics. If they have already met the first responders, maybe in an emergency, they will go to that person and not hide.

We all know that the more familiar a person with autism is with something, the less anxious they are about it. The same goes for emergencies. Practice your drills. Meet your first responders. Check your house constantly for things that need to be secured. Talk to your children about emergencies. Even if you think they aren’t paying attention, they are!

Autism and Tips from First Responders (Part 2)

Autism and Tips from First Responders (part 2)

Last week, I shared tips from a deputy sheriff to help first responders keep your family member safe in emergencies. This week, I’m going to share what a fire chief and fire prevention officer shared at the meeting.

The first thing they both said was to have working smoke detectors in your home. Sounds obvious, right? But do you have them in the right places? Do you change the batteries twice a year? You need a smoke detector on every level of your home – especially near the bedrooms so they will wake you up at night. Change the batteries when you change your clocks in the spring and fall – or on certain holidays, like July 4th and Christmas if you don’t have to change your clocks.

The fire prevention officer shared that studies have been done that children will react to their mother’s voice faster than the beeping of a smoke detector. There are smoke detectors available that you can record a message on, such as “Go outside” or whatever you think your child will respond to. I had no idea there were so many different types of smoke detectors – ones that only flash lights, ones that talk, ones for deaf people. Only you know what your child might listen to, so do some research and find one that is best for your family.

I’ll admit – I have told my kids from the time they were little to run to the garage (our garage is detached) if they hear the smoke detector beeping. They hear it, but they ignore it, so I have very little hope that they would leave the house if they hear it in the middle of the night. But, I also never thought I’d be able to get both of them awake and to the basement in case of a bad storm and they proved me wrong, so ….. maybe they will leave!

Decide on a plan to escape from every room in your home – preferably two ways. Share these plans with your kids and practice them. They may not know why you are doing it, but we all know that when you practice something often, your body tends to take over in a panic. I am sure Casey won’t go out her window, unless I am there to encourage her. She is scared of heights. Rob might go, as his room is on ground floor. Neither would think to check doors for heat before opening it. I’ll be honest – fire is my biggest fear. Rob’s room is right beside mine, so my plan is to get him up and moving before I get Casey. Of course, I’ll be yelling her name the whole time, hoping she’ll come to me. Is it a great plan? Probably not, but it’s all I can come up with. If I can get Rob moving, I’m sure he would go to the garage by himself.

Also – remind your children over and over and over again, once they are out of the house, do not go back in – for anything! Not pets, not you. The firemen will go in and get pets once they get there. Children tend to be very emotional and when they are scared, they may try to run to where they feel safe – even if it is back into danger. Especially people with autism – they thrive on routines to keep them safe. Tell them. Make them repeat it.

Fire prevention is the key. Lock away matches and lighters. Never overload extension cords. (As a side note, they recommended throwing away the cheap dollar cords. People tend to see three outlets in the cord and use them all, not thinking that they are being overloaded.) Clean the dryer vent. Be aware of where you use candles. Keep things away from the stove and furnace.

As for a car accident, they both stressed that using seat belt covers would be a great idea. These can be purchased on several websites or you can make your own. Last week’s post shared more about them.

They also mentioned sharing information with the 911 system about your home. One thing you really need to share is if you have to have heavy locks (or several locks!) on your doors and windows to keep your child safe at home. If they know this, they will be ready to break down your door when they get to your home and save a few minutes. Every second counts in a fire.

You can try putting stickers on your doors to make first responders aware of a person with autism in the home, but like stickers on cars, they may not be noticed right away. If you do choose to do this, make sure the stickers are large and brightly colored. Make sure your neighbors know about your child’s autism – they can be a great resource if you aren’t able to get out and the fire department needs to look for all of you.

Our fire department has a “smoke house” that they use to show children what it might be like to wake up in a room filled with smoke. They are also very open to bringing people with autism to the fire station and letting them see firemen with all of their gear on. They look scary and loud – seeing them before an emergency will help your child understand they are just men that are there to help. Call your fire department and ask if this is something they would allow.

There is no way to know how your child will react in an emergency. They may surprise you and follow your plans exactly or they may hide. The more you share with your local first responders, the better it is for your entire family. Be honest and keep the lines of communication open between you and your first responders. Ask what they have available that might help you explain fire safety to your child. You never know until you ask and in my experience, first responders want to be very involved in all parts of the community.