Many things change once you become a parent, especially when you become a parent of a child with Autism Spectrum Disorder, one of the many things that may change are the holidays and how you celebrate and prepare for them. Thanksgiving can throw a child with autism into sensory overload with all the stimulation and routine change, visiting relative’s homes, or having a house full of guests along with the constant activity can often cause high anxiety and stress levels which can bring on meltdowns. Here is a list of tips that may help make your day a little easier and calmer for your child, you and your loved ones. No matter what, remember that Thanksgiving is a time for appreciation and giving thanks for all we have in our lives. I know sometimes we can get caught up in all the chaos of the therapies, doctors appointments, IEP meetings, research, schedules and such and that this journey can gave it's times of stress and frustration but take the time to remind your child why you are thankful for him or her and to remember all of the beautiful blessings that you have in life.
1. Prepare your child for the upcoming holiday. You can provide a schedule of events for the day and a visual/social story about the Thanksgiving holiday and festivities to help prepare your child for the day's events and routine changes. If your child responds better to pictures you can create a PECs schedule. Explain the general timeline what time guests will be coming/or when you will leave to relatives, what time dinner is, what time you plan on arriving at home.
2. While planning your day, keep your child's needs in mind. You may be looking forward to seeing family and friends and having a large get together. If this type of celebration is difficult for your child consider alternatives such as spending a portion of the day with quiet activities.
3. If friends and family are coming to your home, make sure your child’s room is off-limits. If you are visiting family or friends, talk to them beforehand about having a quiet, solitary space set aside for your child to escape to, if needed. Bring a few of your child's favorite toys, movies or books and spend a few minutes with your child in the space when you arrive, so she/he feels comfortable and knows where she/he can go if feeling overwhelmed.
4. If your child has a picky diey (or food adversions), food sensitivities or aversions to certain foods then bring some of your child's favorite foods.
5. If you are visiting or entertaining family your child doesn't see on a regular basis ask relatives to send you a digital picture if you don’t have any and make a photo album with name tags to help your child be more prepared for meeting relatives.
6. Some relatives don't understand Autism or your child, talk before hand about some of the behaviors your child may exhibit, triggers etc
7. If the festivities are at your home try to minimize the changes you make to your home. Rearrange furniture only if needed and use a few holiday decorations. The more that stays the same, the more your child will feel secure in their environment.
No one knows your child better than you, tailor holidays to make your child calm and relaxed. Holidays don't stop because you have a child with Autism, they just change a bit, overtime you and your family will find what works for your child and yourselves and embrace your new normal. Again, remember what this time of year is truly about, try to relax, prepare the best you can, go with the flow and enjoy yourselves and the time with your loved ones. So, here's to a safe and Happy Thanksgiving from our family to yours!
Wednesday, November 26, 2014
Friday, October 31, 2014
Halloween Tips And Tricks For Autism Parents
Halloween is a fun and exciting Holiday but for a child, and let's face it we parents enjoy it also! For a family with a child or loved one on the Autism Spectrum and/or a sensory processing disorder, it can be stressful. However, with the right attitude, tools and costume you can make Halloween a great experience and have fun like everyone else. Here are some tips for a successful, stress free Halloween.... Autism style!
*Create a visual story of what Halloween may be like for your child, with some pictures or drawings. This will help your child prepare for the day’s activities.
*Try on costumes before Halloween.If the costume is uncomfortable or doesn’t fit right, it may cause unnecessary distress and ruin their fun.
*If your child does not like their costume, don’t make them wear it. Instead, talk about the situation with your child and try to uncover the reason why they don’t like it. After you talk with your child, they may gradually get used to the costume. Have them wear it for short periods of time and at increasing intervals over time.
*Consider a Halloween costume that fits over your child’s regular clothes, such as butterfly wings or capes.
* Homemade costumes are a great idea, you can tailor it to your child's sensory issues. We makes Madasun's costume every year and it has been a lifesaver. Plus its fun and unique just like your child.
*If your child is just NOT digging the whole costume thing, that's OK, there are tons of fun Halloween clothing available that you can opt for instead. For example, last year Madasun was not into any costume, I made dozens of different ones and she freaked over each of them. So, we got her a cool skeleton tee and a pretty black and silver tutu with black tights that I painted bones onto. She looked great, even though it wasn't an actual costume, she was still festive and most importantly she was comfortable and happy, and we had a great time trick or treating.
*Practice going to a neighbor’s door, ringing the bell or knocking on the door and receiving candy.
Here's a few tips for the big day!
*Know your child’s limits and do only what he or she can handle. For example, if your child is not comfortable trick-or-treating, you can start by going to three houses. Assess how your child is doing and build up to more houses the following year or opt for a different fun Halloween activity in the community, such as a school festival or a neighborhood party where the child is already comfortable and knows people.
*Partner with family and friends that your child likes.
*If you are giving out candy at your home, give your child the option to give a piece of candy. During the day, practice greeting people and giving out candy.
*If your child is afraid of going out at night, plan indoor or daytime Halloween activities and plan to trick or treat a little before dusk so that your home at sunset.
*Print out Trick or Treat cards for your child to hand out especially if they are non verbal. You are helping your child say trick or treat in their own way AND spreading awareness:-) we add a lollipop to our as a thank you, and do a quick facts handout as well.
*If your child has specific diet restrictions be sure to buy or make some treats they are allowed to have and enjoy and switch them out with the candy they aren't able to consume.
*Accepting candy and things from strangers is something parents always warn their children NOT to do, 364 days a year that is. Explaining the exception of Halloween to a child on the spectrum can be difficult. Individuals with ASD are typically logical thinkers who prefer the rules never change which may make the holiday tradition of trick or treating hard to comprehend. If your child is having trouble getting it, your best bet is to just stick to homes and candy-givers that you know.
***For The Child With Wandering/Elopement behaviors***
*49% of individuals with Autism have wandering, elopement or bolting behaviors and parents report that it is among one of the most stressful of all ASD behaviors. Halloween night can add to that, with all the chaos, kids running around etc it can cause some hectic anxiety for parents of elopers. Be sure your child is with you AT ALL times.
*Have your child wear a safety alert bracelet, QR ID Code patch, Temp Tattoo with contact info or a GPS location device.
* Photos are fun and they are practical, especially for parents of elopers! It's typical for parents to want to capture Halloween memories by snapping some pictures, but there's a practical side to this as well. Take a picture of your child in their costume before you go trick-or-treating so if they elope, you can help neighbors and law enforcement identify your child on the streets. You may want to do this a week or few days ahead and attach it to a wandering profile form to hand out to your local law enforcement or neighbors so they are aware in case the unthinkable happens.
*It's a good idea to stick to you neighborhood or familiar neighborhoods. Stick to the familiar streets and routes your child knows. The streets on Halloween can be hectic, and imagine how confusing it could be for a child with Autism when thrown in to that chaos while being in unfamiliar surroundings.
Autism families can have a great time on Halloween, know what works and what doesn't, tailor your activities to your child's capabilities and comfort. Have a safe, fun and Happy Halloween!!!
For some great costume ideas and other Halloween tips from one place special needs, check out the link below.
http://www.oneplaceforspecialneeds.com/main/library_halloween_costumes.html
And don't forget to check us out on Pinterest and follow us, we have an Awesome Halloween board, and many other great stuff for those affected by Autism.
http://www.pinterest.com/madasunleefound/
*Create a visual story of what Halloween may be like for your child, with some pictures or drawings. This will help your child prepare for the day’s activities.
*Try on costumes before Halloween.If the costume is uncomfortable or doesn’t fit right, it may cause unnecessary distress and ruin their fun.
*If your child does not like their costume, don’t make them wear it. Instead, talk about the situation with your child and try to uncover the reason why they don’t like it. After you talk with your child, they may gradually get used to the costume. Have them wear it for short periods of time and at increasing intervals over time.
*Consider a Halloween costume that fits over your child’s regular clothes, such as butterfly wings or capes.
* Homemade costumes are a great idea, you can tailor it to your child's sensory issues. We makes Madasun's costume every year and it has been a lifesaver. Plus its fun and unique just like your child.
*If your child is just NOT digging the whole costume thing, that's OK, there are tons of fun Halloween clothing available that you can opt for instead. For example, last year Madasun was not into any costume, I made dozens of different ones and she freaked over each of them. So, we got her a cool skeleton tee and a pretty black and silver tutu with black tights that I painted bones onto. She looked great, even though it wasn't an actual costume, she was still festive and most importantly she was comfortable and happy, and we had a great time trick or treating.
Here's a few tips for the big day!
*Know your child’s limits and do only what he or she can handle. For example, if your child is not comfortable trick-or-treating, you can start by going to three houses. Assess how your child is doing and build up to more houses the following year or opt for a different fun Halloween activity in the community, such as a school festival or a neighborhood party where the child is already comfortable and knows people.
*Partner with family and friends that your child likes.
*If you are giving out candy at your home, give your child the option to give a piece of candy. During the day, practice greeting people and giving out candy.
*If your child is afraid of going out at night, plan indoor or daytime Halloween activities and plan to trick or treat a little before dusk so that your home at sunset.
*Print out Trick or Treat cards for your child to hand out especially if they are non verbal. You are helping your child say trick or treat in their own way AND spreading awareness:-) we add a lollipop to our as a thank you, and do a quick facts handout as well.
*Accepting candy and things from strangers is something parents always warn their children NOT to do, 364 days a year that is. Explaining the exception of Halloween to a child on the spectrum can be difficult. Individuals with ASD are typically logical thinkers who prefer the rules never change which may make the holiday tradition of trick or treating hard to comprehend. If your child is having trouble getting it, your best bet is to just stick to homes and candy-givers that you know.
***For The Child With Wandering/Elopement behaviors***
*49% of individuals with Autism have wandering, elopement or bolting behaviors and parents report that it is among one of the most stressful of all ASD behaviors. Halloween night can add to that, with all the chaos, kids running around etc it can cause some hectic anxiety for parents of elopers. Be sure your child is with you AT ALL times.
*Have your child wear a safety alert bracelet, QR ID Code patch, Temp Tattoo with contact info or a GPS location device.
* Photos are fun and they are practical, especially for parents of elopers! It's typical for parents to want to capture Halloween memories by snapping some pictures, but there's a practical side to this as well. Take a picture of your child in their costume before you go trick-or-treating so if they elope, you can help neighbors and law enforcement identify your child on the streets. You may want to do this a week or few days ahead and attach it to a wandering profile form to hand out to your local law enforcement or neighbors so they are aware in case the unthinkable happens.
*It's a good idea to stick to you neighborhood or familiar neighborhoods. Stick to the familiar streets and routes your child knows. The streets on Halloween can be hectic, and imagine how confusing it could be for a child with Autism when thrown in to that chaos while being in unfamiliar surroundings.
Autism families can have a great time on Halloween, know what works and what doesn't, tailor your activities to your child's capabilities and comfort. Have a safe, fun and Happy Halloween!!!
For some great costume ideas and other Halloween tips from one place special needs, check out the link below.
http://www.oneplaceforspecialneeds.com/main/library_halloween_costumes.html
And don't forget to check us out on Pinterest and follow us, we have an Awesome Halloween board, and many other great stuff for those affected by Autism.
http://www.pinterest.com/madasunleefound/
Sunday, September 21, 2014
I'm sure I will catch a little flack for this blog I am about to write, but seriously this gets irritating and I need to vent. So here it goes.
I can not stand when parents of extremely high functioning, verbal kids try to tell parents of children with Moderate-SEVERE Autism, non verbal etc what to do. What treatment, what diet, tell us how we should feel about Autism! NEWSFLASH we are all living a different journey. Similar yes, but so completely different. Now before I go any further I am NOT saying children with HF ASD don't have their frustrations or struggles. They do, they are AMAZING, they are hardworking and they are wonderful.
My issues are when a parent of a HF kid try to tell me how to handle my severely Autistic child. No, just no. Sorry but we are different playing fields OK. Sorry, but I am just being honest and I know I am not the only one in the severe end of AutismLand who feels this way. I get sick of all the rainbow and butterflies constantly, with no acknowledgment of the dark stuff, the hard stuff, the heartbreaking stuff. The 25 year old man living with his parents unable to communicate at all, still in a diaper, waking in the night hitting him self. The boy whose mother or father must lay on top of to keep their child from hurting them self. The child who has to go to respite overnight programs, the children living part time in clinics. The adults in group homes after their parents pass. The children unable to speak, the children who don't sleep, the children who have no friends, the ones who get abused but cannot tell anyone. The children who wander off and are found days or weeks later DEAD! The children and adults who cannot speak, can not function alone. When you experience the severe side of autism and you have someone telling you how amazing and wonderful it is, or them telling you its as simple as a diet change. Arguing with you over a "cure" or labels. Seriously its ridiculous! Why is it so hard for people to accept that these two worlds are in the same place but they are light years apart. What one family goes through may not be nearly as rough as what another family goes through. When parents try everything under the sun and still see no progress it is insulting to have someone stroll in and say its as simple as this or that or that you haven't tried hard enough.
Autism is a spectrum, no two are alike. Why can't we respect each other? You don't think autism needs a cure? Great, but don't be so cruel because the parent of a child who constantly escapes, hurts themselves, can't function, or doesn't communicate AT ALL disagrees with you. Autism has a light side and a dark side, can't we just agree on that and respect that? When non verbal individuals learn to communicate either verbally or via alternative communication and they cry out about the pain, and the frustrations they have, the feeling prisoner to their own body and mind can't we respect THAT? Autism is always shown as this wonderful land of fluffy clouds and rainbows where there is only wonder and amazement but that is not the case, autism can also be a bitch! Its time to acknowledge the darker side of Autism and advocate for those who have been imprisoned there, those who fight every day to get to the lighter side of the Autism rainbow but remain stuck, with no support, and no answers. We need to stop down playing Autism.
I can not stand when parents of extremely high functioning, verbal kids try to tell parents of children with Moderate-SEVERE Autism, non verbal etc what to do. What treatment, what diet, tell us how we should feel about Autism! NEWSFLASH we are all living a different journey. Similar yes, but so completely different. Now before I go any further I am NOT saying children with HF ASD don't have their frustrations or struggles. They do, they are AMAZING, they are hardworking and they are wonderful.
My issues are when a parent of a HF kid try to tell me how to handle my severely Autistic child. No, just no. Sorry but we are different playing fields OK. Sorry, but I am just being honest and I know I am not the only one in the severe end of AutismLand who feels this way. I get sick of all the rainbow and butterflies constantly, with no acknowledgment of the dark stuff, the hard stuff, the heartbreaking stuff. The 25 year old man living with his parents unable to communicate at all, still in a diaper, waking in the night hitting him self. The boy whose mother or father must lay on top of to keep their child from hurting them self. The child who has to go to respite overnight programs, the children living part time in clinics. The adults in group homes after their parents pass. The children unable to speak, the children who don't sleep, the children who have no friends, the ones who get abused but cannot tell anyone. The children who wander off and are found days or weeks later DEAD! The children and adults who cannot speak, can not function alone. When you experience the severe side of autism and you have someone telling you how amazing and wonderful it is, or them telling you its as simple as a diet change. Arguing with you over a "cure" or labels. Seriously its ridiculous! Why is it so hard for people to accept that these two worlds are in the same place but they are light years apart. What one family goes through may not be nearly as rough as what another family goes through. When parents try everything under the sun and still see no progress it is insulting to have someone stroll in and say its as simple as this or that or that you haven't tried hard enough.
Autism is a spectrum, no two are alike. Why can't we respect each other? You don't think autism needs a cure? Great, but don't be so cruel because the parent of a child who constantly escapes, hurts themselves, can't function, or doesn't communicate AT ALL disagrees with you. Autism has a light side and a dark side, can't we just agree on that and respect that? When non verbal individuals learn to communicate either verbally or via alternative communication and they cry out about the pain, and the frustrations they have, the feeling prisoner to their own body and mind can't we respect THAT? Autism is always shown as this wonderful land of fluffy clouds and rainbows where there is only wonder and amazement but that is not the case, autism can also be a bitch! Its time to acknowledge the darker side of Autism and advocate for those who have been imprisoned there, those who fight every day to get to the lighter side of the Autism rainbow but remain stuck, with no support, and no answers. We need to stop down playing Autism.
Monday, August 25, 2014
Hi this is Dr.B's office calling...
Our Monday morning was incredibly smooth, a little TOO smooth for being a Monday. After Morgun and I got home from taking Madasun to school my phone rang. The caller ID read "Dr.B" I had a wave of anxiety flood over my entire body. Madasun just had her blood work done a couple weeks ago. "Hi Dr needs Madasun in tomorrow morning" I instantly froze, why? Usually you don't go in unless test results are abnormal. "Her blood sugar is extremely high, he want her in ASAP. She will have to come in the morning because its a fasting test. We need to do a glucose test ASAP" Seriously? My non verbal moderate to severely autistic daughter has Sensory Processing Disorder, Anxiety, OCD and currently suspicious of a seizure disorder. Now we are going to throw some more bullshit on her plate!?
All I keep thinking is Madasun's insane love for juice and her dramatic fear of needles. Diabetes-Finger pricks- shots!? Yeah that's not going to be so wonderful for her. Another thing mommy has to do to her while she looks at me in fear and with a "mommy why are you doing this to me" look in her eye. Blood draws and IVs are the worse, she literally has 5 or more people holding her down to get the job done. When she had her PE tube placement surgery she was given a ton of Valium to relax her so they could get the IV in and she still needed Me, Daddy, 3 female nurses, 2 male nurses, her doc and the ultrasound tech to hold her down. She's strong, like crazy STRONG! I mean isn't there a point where are kids get a break? Like, OK Johnny you have XYZ you're good buddy, you get a "get out of jail free card" as far as any other issues.
Well unfortunately that isn't the way life works. Madasun is a little fighter, but sometimes I just wish life would throw her slow pitch instead of a constant curve ball.
All I keep thinking is Madasun's insane love for juice and her dramatic fear of needles. Diabetes-Finger pricks- shots!? Yeah that's not going to be so wonderful for her. Another thing mommy has to do to her while she looks at me in fear and with a "mommy why are you doing this to me" look in her eye. Blood draws and IVs are the worse, she literally has 5 or more people holding her down to get the job done. When she had her PE tube placement surgery she was given a ton of Valium to relax her so they could get the IV in and she still needed Me, Daddy, 3 female nurses, 2 male nurses, her doc and the ultrasound tech to hold her down. She's strong, like crazy STRONG! I mean isn't there a point where are kids get a break? Like, OK Johnny you have XYZ you're good buddy, you get a "get out of jail free card" as far as any other issues.
Well unfortunately that isn't the way life works. Madasun is a little fighter, but sometimes I just wish life would throw her slow pitch instead of a constant curve ball.
Monday, August 4, 2014
Planting seeds of awareness
As was shopping I heard the all too familiar sounds of a child having a meltdown. I smiled and said "Poor little guy is having a hard time. My daughter has some rough meltdowns" she looked at me and smiled and said "Thank you". I continued shopping. We seemed to keep bumping into each other and the more I saw the more I knew this little guy had Autism. I seen the puzzle piece ribbon on her purse. Watched her try to calm him, showing him pictures, signing, stroking his hair and so on. All the tactics I myself know all too well. I could see the stress, hear the whispers, and feel the anxiety of this poor mother who was trying to get through this shopping trip. I handed a couple of cards out to the people I saw starring and continued shopping.
We were then thrown together again by fate in the checkout line. I seen her start to cry so I walked over and offered a hug. Just then I heard the all to familiar words of " you need to beat that kid's ass, he won't act like that after a good "whoopin"" I turned around and said "her little boy has Autism, and he cannot speak. Do you know what Autism is?" The man looked at me speechless and a bit embarrassed.
I told him about Autism, what many of us may encounter on a daily basis, and how the stares and snickers of people are not helpful. The conversation ended with him apologizing to the mother and her son. She gave me a hug and thanked me. I told her what I tell all my fellow Autism parents "Don't mention it. We have to stick together right!?" As we were waiting in checkout some people kept starring and before we could say anything that old man turned to one of them and said "her kid has Autism, give him a break. Starring won't help."
That got me, the feeling I felt can't be put into words. I have many times had to stop and educate people about Autism while in public, but never witnessed them turning and doing the same right after. I could ignore them and walk on but what would that do? I choose to educate them because maybe, just maybe they will learn and they will be accepting, and pass it on.
If you plant a seed a tree might grow. If you plant a bunch of seeds a forest will grow. It was amazing to witness this man who was just blind to Autism a few short minutes ago stand up for the very mother and child he had judged. I believe this is our job as parents to children with Autism, as friends to people affected by Autism, as advocates, to teach society and to teach understanding and compassion so that maybe one day someone will offer a helping hand or an encouraging word rather than a judgmental comment or stare.
Friday, July 4, 2014
Fourth Of July Tips for The Autism Family
July 4th is one of my favorite holidays! It can be an amazing and fun holiday to celebrate, but it’s also a noisy and busy one. And for an Autism family this can present challenges for their child or loved one with an Autism Spectrum Disorder. Autism can affect every aspect of your daily life, down to holiday traditions and tailoring to the sensory needs of your child. Its not bad, just different, even "normal" families have to make changes to their lives when they welcome a child. For ASD families its the same, but the changes made might have to be a little different, depending on the individual. Madasun seems to always enjoy her summer holidays spending the morning painting and reading then heading off to the beach, bbqing with friends and family and watching the fireworks show a few beaches away from the beach where the celebration takes place, the massive crowd becomes too much for her so we have our own party on the beach with family and friends, sparklers, and treats. Memorial Day and Labor day is usually celebrated with roman candles, giant sparklers and fountain fireworks in the back yard of my parents as we swim and BBQ and Madasun can watch the fireworks safely behind the sliding glass door. Her rule, not ours. Here are some tips on a fun, stress free 4th of the July for those with loved ones on the spectrum.
For starters, start thinking about what size of celebration is right for your family and child. It could be a backyard barbeque with close friends and family followed with sparklers, maybe town parade or firework celebration, a day on the beach or camping trip. Maybe it’s going to town for full-out fireworks.
If you decide to attend a fireworks display, or a big party here are some tips to consider:
1. Prepare your child in advance. Talk about what’s going to happen at the party or fireworks display. You can show your child pictures or PECs social stories and schedule. You can show a video of fireworks, playing it quietly at first, then slowly turning up the volume. Explain that there will be lots of people.
2. Focus on the fun! Tell your child why you enjoy fireworks or a holiday barbeque with friends. Let him see that you’re excited to attend. This will help him get excited too. Describe the activities you know they might enjoy.
3. Bring along favorite items such as toys, games and snacks. This can provide a crucial distraction if your child gets antsy while waiting for activities to start.
4. Have a blanket, towel or chair for your son. Creating a defined space that’s “his/her own” can help a child with autism feel more comfortable in a crowd.
5. Consider bringing headphones to help block out excessive noise. As we all know, fireworks can pack a lot of sensory stimulation! Also consider sitting some distance from the display ,someplace you can still see the colorful explosions, but without the intense noise.
6. Make sure your child knows how to ask for a break from the crowd or noise. If your child is verbal, he may only need a reminder. However, many children on the spectrum do best with a visual aid. For example, provide your child with a special card to hand to you when he needs a break from the stimulation.
7. Make sure safety is a priority. Check out “Stay Safe This July 4” from the American Academy of Pediatrics.
With all the excitement, events, crowds, commotion and possible triggers that often come with the holidays it is important to remember SAFETY!
49% of individuals with an Autism Spectrum Disorders have Wandering/Elopement tendencies. Similar to wandering behaviors in seniors with dementia or Alzheimer’s, children with Autism are prone to wandering away from a safe environment. Unfortunately, many cases end in tragedy.
Wandering is the tendency for an individual to try to leave the safety of a responsible person's care or a safe area, which can result in potential harm or injury.
Wandering occurs across all settings, under every type of adult supervision. Increased risks are associated with autism severity. Accidental drowning accounts for approximately 90% of lethal outcomes. 32% of parents of elopers have reported a "close call" with drowning. Some dangers associated with autism wandering include: *Drowning
*Exposure
*Dehydration
*Hypothermia
*Traffic Injuries
*Falls
*Physical Restraint
*Encounters with strangers
Some safety tips include:
1. Secure your home
Consider wind chimes on doors, windows and gates, securing dead bolt locks that require keys on both sides, a home security alarm system, inexpensive battery-operated alarms on doors, placing hook and eye locks on all doors above your child's reach, fencing your yard, adhering printable STOP SIGNS to doors, windows and other exits, etc.
2. Consider a tracking device:
Check with local law enforcement for Project Lifesaver or LoJak SafetyNet services. These tracking devices are worn on the wrist or ankle and locate the individual through radio frequency. Various GPS tracking systems are also available.
3. Consider an ID Bracelet:
Medical ID bracelets will include your name, telephone number and other important information. They may also state that your child has autism and is non-verbal if applicable. If your child will not wear a bracelet or necklace, consider a temporary tattoo with your contact information.
4. Teach your child to swim (one of the most important safety measures!)
Swimming lessons for children with special needs are available at many YMCA locations. The final lesson should be with clothes on. Remember: teaching your child how to swim does not mean your child is safe in water. If you own a pool, fence it and if neighbors have pools, let them know of these safety precautions and your child's tendency to wander. Remove all toys or items of interest from the pool when not in use.
5. Alert Your Neighbors
It is recommended that caregivers plan a brief visit with neighbors to introduce their loved or provide a photograph. Knowing your neighbors can help reduce the risks associated with wandering. See the caregiver tool kit below for resources to use to alert them.
6. Alert First Responders
Providing first responders with key information before an incident occurs may improve response. Informational handouts should include all pertinent information and be copied and carried with caregivers at all times. Circulate the handout to family, neighbors, friends and co-workers, as well as first responders. See the tool kits below for resources to use to alert them.
1. Make sure your child is under constant supervision while out and about, be sure to have your child wear a safety alert Autism bracelet with information on it, or a temp. tattoo.
2. Have a family emergency Wandering plan ready.
4. Be sure everyone in your group is aware of your child's Wandering, Elopement or bolting tendencies.
5. Make sure fireworks, BBQs, fires etc are all watched and not accessible to your child.
6. If you are attending a backyard BBQ at a family or friends house adhere red, printable stop sign to doors, windows and gates. Make sure all the windows, gates and doors are secure. Remove toys and objects of interest from the pool when finished.
https://m.facebook.com/profile.php?id=367977273333794
8. If you are out of town alert campground or hotel staff of your child's Wandering/Elopement behaviors.
9. Adhere a safety sticker alerting first responders in the event of an accident that there is an individual with Autism that may not respond to verbal commands on your car window.
Summer is a fun time for the whole family, when having children families take precautions, autism families may have to make different preparations and take different precautions. Have a great 4th of July everyone!!!
Sunday, May 25, 2014
Another dose of hope....progress no matter how big or small, fast or slow is progress
This morning Madasun woke up at 6 bright eyed and busy tailed, with a huge smile on her face. She said "ga ga good bye. Goodbye" to her Daddy as he got ready to head to work. She was a little down after that...because she is used to Daddy staying home all weekend but during the Summer their business is a bit busy so he works the occasional weekend. Anyway, I told her "well it is technically summer break now so that means " before I could finish she ran to her room and handed me clothes and said "walk. Walk." Holy shit! She's being so verbal for one. So AMAZING but the thing is during summer break we take early morning walk since we aren't running off to school and we don't go down to grandpa's shop to do paperwork until the late morning. Also, we live in AZ so summers are not exactly a beautiful 75-80degrees...more like 110-130!!! So morning is when we Desert dwellers fit in our walks, jogs etc. Basically the only time you are doing something outside here in AZ past noon is when you're swimming. Any way she remembered and she vocalized that. That is HUGE. Those who arent affected by Autism may think " Well a 7 year old should be able to remember things and tell you that is normal, big whoop!" Well, for those of us in Autismworld it is a big whoop, it's a miracle, its a ray of hope. It is a window inside their often locked up world. When our children show us things like this our hearts fill with hope, joy and we see our child is in there! Each time she shows us something like this our fears are eased a bit and our hope for the future grows a bit stronger. She is one amazing girl who overcomes challenges and proves each person that ever limits her WRONG! Can't is not in our vocabulary.
I never put limits on her, and I always push her to try and to learn and to do. I won' ever give up fighting for her. I will never give up on teaching her...until my dying breath I refuse to give up on her, she is in there. She is extraordinary and she deserves nothing less. Now, I won't lie there are things I treat her differently on, certain things that I let her do that typical parents of typical children don't. But you know, we aren't typical parents and typical children so that's what we do. But I never treat her as a disabled, helpless child because she is not. She is differently abled. She understands most things she's just trapped in her own mind sometimes and she's trapped in a body that she doesn't have control over 100% of the time. Madasun is capable of greatness and she proves this everyday. She shows her intellect, and when something can't be done the normal way she ponders a moment and figures out a way to do it. It might be a longer way, an odd way or a harder way but she figures out a way to do something in a way that she CAN do it. She's a problem solver, always has been. She showed advanced problem solving skills in early infancy. She is incredibly smart, a lot of people may think she is not smart or not in there since she's mostly non verbal. Once someone spends the time, sits and really watches and interacts with her they see what an amazing and intelligent person she is.
She is also the most kind hearted, gentle, genuine and accepting person. Madasun has a huge heart and she loves and respects every living thing equally. She doesn't hold grudges or judge someone based off gossip, or the clothes they wear or what they've done. She knows no hatred, judgment or cruelty to others, and accepts everyone open heartedly, even if they judge her, think she is "weird", or don't accept her...she doesn't hold a grudge against them. She sees things in such a beautiful and magical way and she has taught me some of my most treasured lessons. Madasun is wise beyond her young years.
Thursday, April 17, 2014
I Am An Autism Mom But I Am Human
Madasun was always this amazingly sweet child. She brightened up any room she walked into, a smile and laugh that was contagious. She was well behaved, and easy going. She has always had some behaviors that are challenging but she's a child with halted progression/non verbal/ moderate to severe Autism, so that's to be expected. But for her having moderate to severe Autism she was the most well behaved, happy, easy to please child. She engaged, she would engage in learning. Over the past year something changed. She slowly became more and more frustrated, irritable, and in the past 3 months she has become the polar opposite of her former self. She exhibits mannerisms, and behaviors that she never did before, ever.
Madasun could have someone come up and steal a favorite toy right out of her hand, and she would do nothing, she could go days with out a meltdown, enjoyed shopping, birthday parties, movies etc she NEVER exhibited aggressive behavior towards anyone, never any self injurious behavior etc NOW.... It is as if my sweet Madasun has been possessed by a completely different person. She has frequent outbursts and meltdowns that come out of nowhere and will throw large objects, kick furniture, she almost had the top of a hutch fall on her! She will push, kick, slap, hair pull etc anyone near her during these episodes. I currently have a bruise on my cheek from her sippy cup. Afterwards she is so upset, frightened and genuinely sad. As if she had no control over her meltdowns. It kills me to see her this way. I finally ran out of ideas and called her developmental pediatrician, whom we were scheduled an appt with this week.
We got up at 5am and loaded the girls up around...7am to embark on our 4hr drive....6hrs with them since Morgun, bless her heart, "have to go to the bathroom" in every town we pass, and Madasun often needs to be changed anyway and likes to take a break from the car. Anyway...we hit road construction 100miles from her doc office...once we are in Sun City AZ we are close thank god....nope Navigation is going coocoo...we haven't got this route before to his offices so we had to have the help of good ole "Navi" she was changing her mind every 10secs on where to go. Finally a familiar landmark and all is fine. We arrive in the parking lot 20min late, thank god for them understanding we are from out of town and road trips with an Autistic kid can have sudden " impromptu" moments. As we are fumbling through the mountains of backpacks filled with extra clothing, toys, books, and Madasun's 5 foods she eats (yes she eats about 5-10 things ONLY but we will talk about that some other time) my fiance the saint he is "i will get her inside and get everything going. Get what you need and you and Morgun meet us in there" still cant find Morgun's flip flops...did they fall out when we stopped at that "Texas chainsaw looking town!?" You know that town...the town with a gas station/garage/general store with about 2 old houses and maybe a trailer or two and NOTHING else...the last place the characters stop at before they die in a horror movie!? Yeah...that town. Here in AZ we have about 50 of those haha....ok getting back on track now. So i find her flip flops toss them to her and she quickly slips them on. Gets her back pack and is ready to go, i grab my 15lb binder, it hold a holy grail of vital info pertaining to miss Madasun. Evaluations, progress reports, things we have tried and their out comes, concerns, test results, daily entry notebooks from teachers and therapists. Etc
Morgun is pulling me "come on mom...sissy in there!" We finally get in the room and I'm able to breathe, ok all this chaos means this is going to be a great appt. Answers, discussion...relief. No. Just no. Now my daughters developmental pediatrician is a very smart man, and i do like him, and appreciate him. However something i have never quite been a fan of is his very assertive, know it all, rigid bedside manner. With that being said more towards the end of each visit he always seems to "melt a layer or two" and listens because at that point he realizes OK that is odd i need to listen to mom and dad because there is no black and white with Madasun, everything is mostly gray.
Since Madasun has always been generally sweet, easy, and pretty well behaved and experiences short phases or spurts of challenging behavior she can mind boggle many of her professionals as far as what to do goes. But this time it is more than that...she has switched and now has short phases of her former self and is constantly in a meltdown it seems. Her aggression, frustration, sleep issues, hyperactivity, dare devil tendencies, stims, and behaviors have all magnified by 100% and are hindering progression, and interfering with her daily life. Risperdol... A little word wrote on the Rx paper i held in my hand brought on a sea of emotion that i had no control over and I begin to break down. My child has run out of options and now we are standing in the lobby of medication. I am not against medication. I just never in a million years imagined it would be something we would need to consider, given the way she's always been. The overwhelming thoughts start to come to the surface and I breakdown....
"What happened? All her doctors, us , and family members never thought that this was an avenue that we would ever have to take but here we are. Standing at the starting point. What happened to her? where did she go? Is she still the same little sweet girl or has her autism finally taken over her? Did I miss something? Did something happen to her that she can't tell us about? Did I fail her? Will this medication work? Will she have a reaction? What if something happens to her? What if she has a severe reaction and she dies because of something I put in her body? Am I failing by giving her medication? Is our hope still there? I feel like it's nowhere to be found. Lately I have just had enough. I never had a chance to break down since her diagnosis was first placed upon our shoulders. I don't want to see my baby I want a help her! I'm her mother!"
On our way home we pulled off near the mountains. A scene loved by both Madasun and I. Nature seems to bring us both peace. It's partly cloudy, the rolling grassy hills that but up against the tall rocky, mountains are filled with wild flowers. It's warm with the perfect cool breeze. I take her hand and pick her some flowers, when i hand them to her i see that smile that can warm the coldest heart, instill joy in the saddest people, and i hear the sweetest sound my ears have ever heard..."thank you. My fwowers (aka flowers)" There it is, there is that jolt of hope, as if she and it are saying "it's OK, remember calm sees don't make skilled sailors."
There is a song that has spoken to me the past couple of months.....
"I can hold my breath
I can bite my tongue
I can stay away for days
If that's what you want
Be your number one
I can fake a smile
I can force a laugh
I can dance and play the part
If that's what you ask
Give you all I am
I can do it
I can do it
I can do it
But I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human
I can turn it on
Be a good machine
I can hold the weight of worlds
If that's what you need
Be your everything
I can do it
I can do it
I'll get through it
But I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human
I'm only human
I'm only human
Just a little human
I can take so much
'Til I've had enough
'Cause I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human"
It's important to remember it's ok to breakdown...we do hold the weight of worlds on our shoulders. Researchers say "the stress a mother of a child with Autism experiences is similar to that of a combat soldier." It's also important to remember you aren't alone. Not just because of family, or friends or the millions of families that reside in "Autismland" but your child, your child is right there in the trenches with you and we need to remember what THEY go through and it's OK for THEM to breakdown too.
We got up at 5am and loaded the girls up around...7am to embark on our 4hr drive....6hrs with them since Morgun, bless her heart, "have to go to the bathroom" in every town we pass, and Madasun often needs to be changed anyway and likes to take a break from the car. Anyway...we hit road construction 100miles from her doc office...once we are in Sun City AZ we are close thank god....nope Navigation is going coocoo...we haven't got this route before to his offices so we had to have the help of good ole "Navi" she was changing her mind every 10secs on where to go. Finally a familiar landmark and all is fine. We arrive in the parking lot 20min late, thank god for them understanding we are from out of town and road trips with an Autistic kid can have sudden " impromptu" moments. As we are fumbling through the mountains of backpacks filled with extra clothing, toys, books, and Madasun's 5 foods she eats (yes she eats about 5-10 things ONLY but we will talk about that some other time) my fiance the saint he is "i will get her inside and get everything going. Get what you need and you and Morgun meet us in there" still cant find Morgun's flip flops...did they fall out when we stopped at that "Texas chainsaw looking town!?" You know that town...the town with a gas station/garage/general store with about 2 old houses and maybe a trailer or two and NOTHING else...the last place the characters stop at before they die in a horror movie!? Yeah...that town. Here in AZ we have about 50 of those haha....ok getting back on track now. So i find her flip flops toss them to her and she quickly slips them on. Gets her back pack and is ready to go, i grab my 15lb binder, it hold a holy grail of vital info pertaining to miss Madasun. Evaluations, progress reports, things we have tried and their out comes, concerns, test results, daily entry notebooks from teachers and therapists. Etc
Morgun is pulling me "come on mom...sissy in there!" We finally get in the room and I'm able to breathe, ok all this chaos means this is going to be a great appt. Answers, discussion...relief. No. Just no. Now my daughters developmental pediatrician is a very smart man, and i do like him, and appreciate him. However something i have never quite been a fan of is his very assertive, know it all, rigid bedside manner. With that being said more towards the end of each visit he always seems to "melt a layer or two" and listens because at that point he realizes OK that is odd i need to listen to mom and dad because there is no black and white with Madasun, everything is mostly gray.
Since Madasun has always been generally sweet, easy, and pretty well behaved and experiences short phases or spurts of challenging behavior she can mind boggle many of her professionals as far as what to do goes. But this time it is more than that...she has switched and now has short phases of her former self and is constantly in a meltdown it seems. Her aggression, frustration, sleep issues, hyperactivity, dare devil tendencies, stims, and behaviors have all magnified by 100% and are hindering progression, and interfering with her daily life. Risperdol... A little word wrote on the Rx paper i held in my hand brought on a sea of emotion that i had no control over and I begin to break down. My child has run out of options and now we are standing in the lobby of medication. I am not against medication. I just never in a million years imagined it would be something we would need to consider, given the way she's always been. The overwhelming thoughts start to come to the surface and I breakdown....
"What happened? All her doctors, us , and family members never thought that this was an avenue that we would ever have to take but here we are. Standing at the starting point. What happened to her? where did she go? Is she still the same little sweet girl or has her autism finally taken over her? Did I miss something? Did something happen to her that she can't tell us about? Did I fail her? Will this medication work? Will she have a reaction? What if something happens to her? What if she has a severe reaction and she dies because of something I put in her body? Am I failing by giving her medication? Is our hope still there? I feel like it's nowhere to be found. Lately I have just had enough. I never had a chance to break down since her diagnosis was first placed upon our shoulders. I don't want to see my baby I want a help her! I'm her mother!"
There is a song that has spoken to me the past couple of months.....
"I can hold my breath
I can bite my tongue
I can stay away for days
If that's what you want
Be your number one
I can fake a smile
I can force a laugh
I can dance and play the part
If that's what you ask
Give you all I am
I can do it
I can do it
I can do it
But I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human
I can turn it on
Be a good machine
I can hold the weight of worlds
If that's what you need
Be your everything
I can do it
I can do it
I'll get through it
But I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human
I'm only human
I'm only human
Just a little human
I can take so much
'Til I've had enough
'Cause I'm only human
And I bleed when I fall down
I'm only human
And I crash and I break down
Your words in my head, knives in my heart
You build me up and then I fall apart
'Cause I'm only human"
It's important to remember it's ok to breakdown...we do hold the weight of worlds on our shoulders. Researchers say "the stress a mother of a child with Autism experiences is similar to that of a combat soldier." It's also important to remember you aren't alone. Not just because of family, or friends or the millions of families that reside in "Autismland" but your child, your child is right there in the trenches with you and we need to remember what THEY go through and it's OK for THEM to breakdown too.
Wednesday, April 9, 2014
it's time to call a truce in the Autism "civil wars"
Traditional "mommy wars" like breastfeeding or formula feeding, baby wearing or strollers and carriers, bed sharing or cribs and CIO, getting an epidural and hospital births vs home births, and so on don't quite hold a light to that of the Autism "mommy" wars...well not necessarily "mommy" wars. It's Moms, Dads, Grandparents, Siblings, individuals themselves with Autism, therapists, doctors, researchers, teachers, advocates everyone. It's the Autism Community Civil Wars!
To those who aren't in the trenches of Autism daily, living this life may have a hard time understanding how controversies can exist over what Autism is and how it should be treated. What causes it, Vaccines, genetics, pollution, gut issues, etc. If Autism needs a cure or if the thought of that is offensive, whether or not organizations like Autism Speaks are the devil, High Functioning Autistic individuals protesting parents and organizations etc
Well believe it or not they do exist, and they create an enormous division where there should be unity.
Autism is a spectrum disorder...it affects individuals mildly to severely. Why is it so hard to comprehend this and more important respect this? My daughter is non verbal, severe to moderately affected. I respect the feelings and thoughts of mildly affected or high functioning individuals and their parents. But don't fight against researchers trying to understand the disorder, it's causes, and possible treatments and cures. If your a totally independent individual with Autism living your life, I admire you. I am happy for you, I respect you and your family. You don't feel you need curing of anything and well, you don't. You are beautiful. That's your decision your thoughts your feelings. But the family with the 8 year old in pull ups, having seizures, unable to speak or communicate, unresponsive to therapy, hitting themselves until blood gushes from their face? Or the 65year old parent of the non verbal 35 year old severely autistic son? The families living on the lower end of the spectrum? Or the families who have lost their children due to wandering tendencies? They all have every right to want answers for their child or want to see their child be freed from the chains and locks Autism places on THEIR child or loved one.
It's sad that a divide like this exists in a community that grows larger and larger every day!!! A community that should be filled with grounded humble people. It's counterproductive to solving the problems that autistic parents, adults and children face daily. The vaccine, research, treatment, autism speaks, and all the other debates just need to be put to rest. Again, it's causing a divide and it's counterproductive!
Instead of spending your time fighting over this what about the real issues that always get left in the dark? Individuals with Autism being denied treatments and therapies that could help them improve enormously, denied services, insurance, SSI, etc Understaffed and undertrained schools, communities with NOTHING, no resources nothing! Kids being forgotten everyday and their parents never being heard! All anyone wants to talk about is positive feel good stories that make Autism look like a blessing to families it's bestowed upon when families of severely affected individuals are left in the dark and overshadowed by puzzle pieces and "Johnny" plays Mozart with out one lesson and is making friends. "Emily" didn't talk till she was 3 now she's overcome her Autism.. Or the articles and time spent covering your fighting!? Now the feel good stories don't get me wrong these stories are amazing and should be told but it's all you ever see and for those who don't live this life get a misconception. What about the 7 year old still silent? What about the mom up at 4am with her non verbal teenage son beating himself that he has to have his hands tied? What about the parents searching for help and solutions for years and never finding them or are just handed medication after medication or told to give up? What about the families fighting schools, local governments, and not getting anything to help their loved ones? Keep wasting time on vaccine debates, Should you or shouldn't you support Autism Speaks debates and ignore other advances in research, and fa while more children and families suffer. 1 in 68 people...1 in 68...each journey is different but each are connected and we should be supporting one another NOT fighting one another. Could you imagine unified Autism community? The possibilities then...endless. Support both sides of the spectrum, not just the one you are. Divided like it is now just hurts those who suffer most from it.
So I will leave you with the words of the wise and inspiring Dr. Martin Luther King Jr. "Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that."
To those who aren't in the trenches of Autism daily, living this life may have a hard time understanding how controversies can exist over what Autism is and how it should be treated. What causes it, Vaccines, genetics, pollution, gut issues, etc. If Autism needs a cure or if the thought of that is offensive, whether or not organizations like Autism Speaks are the devil, High Functioning Autistic individuals protesting parents and organizations etc
Well believe it or not they do exist, and they create an enormous division where there should be unity.
Autism is a spectrum disorder...it affects individuals mildly to severely. Why is it so hard to comprehend this and more important respect this? My daughter is non verbal, severe to moderately affected. I respect the feelings and thoughts of mildly affected or high functioning individuals and their parents. But don't fight against researchers trying to understand the disorder, it's causes, and possible treatments and cures. If your a totally independent individual with Autism living your life, I admire you. I am happy for you, I respect you and your family. You don't feel you need curing of anything and well, you don't. You are beautiful. That's your decision your thoughts your feelings. But the family with the 8 year old in pull ups, having seizures, unable to speak or communicate, unresponsive to therapy, hitting themselves until blood gushes from their face? Or the 65year old parent of the non verbal 35 year old severely autistic son? The families living on the lower end of the spectrum? Or the families who have lost their children due to wandering tendencies? They all have every right to want answers for their child or want to see their child be freed from the chains and locks Autism places on THEIR child or loved one.
It's sad that a divide like this exists in a community that grows larger and larger every day!!! A community that should be filled with grounded humble people. It's counterproductive to solving the problems that autistic parents, adults and children face daily. The vaccine, research, treatment, autism speaks, and all the other debates just need to be put to rest. Again, it's causing a divide and it's counterproductive!
Instead of spending your time fighting over this what about the real issues that always get left in the dark? Individuals with Autism being denied treatments and therapies that could help them improve enormously, denied services, insurance, SSI, etc Understaffed and undertrained schools, communities with NOTHING, no resources nothing! Kids being forgotten everyday and their parents never being heard! All anyone wants to talk about is positive feel good stories that make Autism look like a blessing to families it's bestowed upon when families of severely affected individuals are left in the dark and overshadowed by puzzle pieces and "Johnny" plays Mozart with out one lesson and is making friends. "Emily" didn't talk till she was 3 now she's overcome her Autism.. Or the articles and time spent covering your fighting!? Now the feel good stories don't get me wrong these stories are amazing and should be told but it's all you ever see and for those who don't live this life get a misconception. What about the 7 year old still silent? What about the mom up at 4am with her non verbal teenage son beating himself that he has to have his hands tied? What about the parents searching for help and solutions for years and never finding them or are just handed medication after medication or told to give up? What about the families fighting schools, local governments, and not getting anything to help their loved ones? Keep wasting time on vaccine debates, Should you or shouldn't you support Autism Speaks debates and ignore other advances in research, and fa while more children and families suffer. 1 in 68 people...1 in 68...each journey is different but each are connected and we should be supporting one another NOT fighting one another. Could you imagine unified Autism community? The possibilities then...endless. Support both sides of the spectrum, not just the one you are. Divided like it is now just hurts those who suffer most from it.
So I will leave you with the words of the wise and inspiring Dr. Martin Luther King Jr. "Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that."
Sunday, April 6, 2014
How amazing is this. I have been struggling with my faith a bit as I watch my daughter's behavior change over night and become increasingly worse the past two months. We made our sign for the window like we do every April it reads "We are Lighting it up Blue for Autism which affects 1 in 68. One is our daughter, Madasun!"
Well the light caught the glitter at the perfect angle this morning. Right after I heard the blood- curdling screams of Madasun and trying to bring her out of her meltdown, and getting a few toys thrown at my head, when it was all over and I hugged my poor, exhausted baby girl I looked up and seen a rainbow like spectrum shining across my ceiling. I just thought that was amazing and perfect timing it comforted me.
I am a dreamer, a believer and little things like this mean a lot to me. Madasun is a lot like me in that aspect. I watch her take in a sunset and see it as a sort of magic, appreciating the natural wonder that we are blessed to witness every day. So when I'm trying to keep my daughter from hurting her self during a meltdown and she looses control of herself and look terrified, and we both lay there exhausted from the battle we just went through. And look up to see beautiful colors dancing on the ceiling from a sign made in support of her and those like her is just a beautiful thing to me and because it reminds me I'm not alone in this journey. Not just because I have faith or family, friends etc but because the autism community is a large one and we are all connected in ways and the feeling you get from talking to someone who just "gets it" is overwhelming. We as a community need to remember this, and instead of arguing over if we need treatments or a "cure" or don't or if support organizations such as Autism Speaks or not, we need to remember what we stress to orhers when spreading awareness. Autism is a spectrum disorder it affects individuals differently, so your journey through Autism and your feelings towards it are yours, but another family is experiencing a whole different side. Respect that. Respect each others journey and support one another. That is all. Happy Sunday everyone, may you get plenty of relaxation and quality time with those who mean most to you
<3Autism Mommy
Well the light caught the glitter at the perfect angle this morning. Right after I heard the blood- curdling screams of Madasun and trying to bring her out of her meltdown, and getting a few toys thrown at my head, when it was all over and I hugged my poor, exhausted baby girl I looked up and seen a rainbow like spectrum shining across my ceiling. I just thought that was amazing and perfect timing it comforted me.
I am a dreamer, a believer and little things like this mean a lot to me. Madasun is a lot like me in that aspect. I watch her take in a sunset and see it as a sort of magic, appreciating the natural wonder that we are blessed to witness every day. So when I'm trying to keep my daughter from hurting her self during a meltdown and she looses control of herself and look terrified, and we both lay there exhausted from the battle we just went through. And look up to see beautiful colors dancing on the ceiling from a sign made in support of her and those like her is just a beautiful thing to me and because it reminds me I'm not alone in this journey. Not just because I have faith or family, friends etc but because the autism community is a large one and we are all connected in ways and the feeling you get from talking to someone who just "gets it" is overwhelming. We as a community need to remember this, and instead of arguing over if we need treatments or a "cure" or don't or if support organizations such as Autism Speaks or not, we need to remember what we stress to orhers when spreading awareness. Autism is a spectrum disorder it affects individuals differently, so your journey through Autism and your feelings towards it are yours, but another family is experiencing a whole different side. Respect that. Respect each others journey and support one another. That is all. Happy Sunday everyone, may you get plenty of relaxation and quality time with those who mean most to you
<3Autism Mommy
Friday, April 4, 2014
Let it out- it's OK to cry, get angry and envy all those typical parents.
Many times I have parents vent to me about having moments of anger, frustration, sadness, jealousy and so on about their child, or in some cases children having Autism. I always tell them this....
"It's OK! Let it out! What you're feeling is completely normal given the circumstances of this hand we have been dealt. Having a child with Autism is rough, and those that live it know. It's OK to be angry at times, it's OK to be sad or get in a funk, its OK to cry. It's OK to feel a little bit of jealousy when you see parents of neuro-typical children. But it's important to not dwell there, and letting yourself feel these emotions as they come and letting them out is a healthy release. "
I never realized that I wasn't taking my own advice. My family and friends and those that know me through my FB page "Autism Mommies" or from my support group in my community know that I have always been optimistic about Madasun having Autism and that I always focus on the beauty and joy she brings to our lives. I was immediately accepting of her having Autism and focused on the "how's" not the "why's". I threw myself into research, awareness, and keeping busy that I never really stopped and gave myself a chance to be upset. about my daughter having Autism
I was told by numerous doctors had told me " You need to grieve the loss of the child you thought you had, the hopes, the dreams you had for her, because they are gone " and...
"If she isn't talking yet, or by 4-5 years of age she never will. She will never be in a normal class, write, count, learn..."
1. Those "doctors" were all fired and we never looked back.
2. What the fuck? Mourn and grieve the loss of the child I "thought" I had!? And the hopes and dreams I had for her!!?? NO! Sorry but NO!!! She is the same child she always has been.
Her Autism isn't what makes her HER, SHE does that. Autism is something she has. And my hopes and dreams for her well my main ones are for her to find joy and happiness in life and that at the end of the day those are the three that are most important, her having Autism does not change that. The others such as picturing tea parties, and "mommy can we paint our nails" , family trips, school plays, dance classes, softball, soccer, Saturday swim meets, Friday night movie theater night like I had growing up, first dates, homecoming, prom, graduating high school, going off to college, finding something she loves and being successful, traveling, falling in love, becoming a mother if she wanted, and so on. Typical stuff I think most parents Invision when their child is born.
Many times I have parents vent to me about having moments of anger, frustration, sadness, jealousy and so on about their child, or in some cases children having Autism. I always tell them this....
"It's OK! Let it out! What you're feeling is completely normal given the circumstances of this hand we have been dealt. Having a child with Autism is rough, and those that live it know. It's OK to be angry at times, it's OK to be sad or get in a funk, its OK to cry. It's OK to feel a little bit of jealousy when you see parents of neuro-typical children. But it's important to not dwell there, and letting yourself feel these emotions as they come and letting them out is a healthy release. "
I never realized that I wasn't taking my own advice. My family and friends and those that know me through my FB page "Autism Mommies" or from my support group in my community know that I have always been optimistic about Madasun having Autism and that I always focus on the beauty and joy she brings to our lives. I was immediately accepting of her having Autism and focused on the "how's" not the "why's". I threw myself into research, awareness, and keeping busy that I never really stopped and gave myself a chance to be upset. about my daughter having Autism
I was told by numerous doctors had told me " You need to grieve the loss of the child you thought you had, the hopes, the dreams you had for her, because they are gone " and...
"If she isn't talking yet, or by 4-5 years of age she never will. She will never be in a normal class, write, count, learn..."
2. What the fuck? Mourn and grieve the loss of the child I "thought" I had!? And the hopes and dreams I had for her!!?? NO! Sorry but NO!!! She is the same child she always has been.
Her Autism isn't what makes her HER, SHE does that. Autism is something she has. And my hopes and dreams for her well my main ones are for her to find joy and happiness in life and that at the end of the day those are the three that are most important, her having Autism does not change that. The others such as picturing tea parties, and "mommy can we paint our nails" , family trips, school plays, dance classes, softball, soccer, Saturday swim meets, Friday night movie theater night like I had growing up, first dates, homecoming, prom, graduating high school, going off to college, finding something she loves and being successful, traveling, falling in love, becoming a mother if she wanted, and so on. Typical stuff I think most parents Invision when their child is born.
I have accepted the fact that a very different road will be traveled to any of those things. That many challenges lie ahead and battles are fought day to day. But not impossible. I have hope that Madasun will one day overcome her Autism, I am also realistic and know that there is the possibility that she may never but I don't entertain the "Nevers" or "cants" of the world. I will fight for her and fight to free her and her voice until my last dying breath.
But I never allowed myself to be devastated by the words "your child has Autism." Because I kept my self from that. I'm a writer, and thinker. Not so much a talker. This is my therapy. I felt ashamed for being heartbroken. I needed to take the advice I had given so many times to the parents that come to me. Because Autism is rough, especially when you are where we are, non verbal, low end of the spectrum. I in no way think my daughter is less, or is low functioning I think she has a brilliant mind and an even more amazing heart and soul but her Autism locks her up and it causes her pain, I see it in her eyes when she's watching others and wanting to do something and trying but not being able to control her body, I see the frustration and the sadness that causes her and I would take that away if I could. I would sell my soul to the devil if it meant I could free her from those struggles and that pain. I am no longer going to feel ashamed for saying that because I love my daughter NOT her Autism. Her Autism causes her pain that I see every day and how could I as a mother love something that does that to my child. Autism is not what makes her the sweet, genuine, kind, funny girl who loves camping, swimming and star gazing. Autism isn't what makes her a loving, compassionate girl who doesn't judge others or bully any one, that is HER and I know in my heart she would still be like that if she didn't have Autism.
Right now Madasun is 6, she has been non verbal all her life. When her 4th and 5th birthdays came and went the echoes of those doctors haunted me at night...a few days after her 5th birthday she said her first clear, true word. 4 months after that 5th birthday she wrote her name for the first time. Tears of joy streamed down my face at I looked at that piece of paper. It fueled me. My hope take was running on fumes and she was like here mom let me fill her up for ya!
She has shown me time and time again "hey mom I'm in here" she knows a lot about astronomy and shows me by pointing to pictures in her astronomy books as I asked questions, heck she dialed in a telescope for the first time at 2 years old. She is a serious thinker, she's very meticulous with things too. She is silly, she laughs...a lot. She loves the water, we are in Arizona we live in the land of 120 degree summers right along a river and during those hot days I see her at her most joyous self. No meltdowns, no stimms, she's a normal kid(extraordinary kid) just splashing, running and giggling with her little sister and their friends. Pulling mom out and making me do piggy back rides through the water, spinning and tossing her as she laughs and laughs...in moments like these all those doctors, ignorant by standers, meltdowns, sensory issues, therapy, pain of her not speaking all of that is GONE. In those moments I'm in her world and she is in mine and that is what its all about.
An idea of what its like to have a child with Autism. Why I might not make it to every birthday party, night out, movie, dinner...why I might have to cancel last minute, why I may be late, why you see an abundance of Autism related posts on my FB...in April a lot of my posts on my personal FB pertain to Autism, I'm always posting something but during Awareness month I "open the flood gates" so to speak. So here is why...there are way too many people out there who misunderstand Autism. My first born, my daughter, my Madasun is non verbal and is moderately-severely Autistic. My daughter does a lot of amazing things but the hell we endure needs to have a some light shed on it. Positive, feel good Autism stories are amazing and I love them and I myself spread optimism to the families I encounter daily on this journey but we leave the darker more serious side of Autism left out far too often which can cause people who don't live this life to misunderstand... "What's a big deal that kid is just quirky" We need to show a little more of the non verbal, self injurious, non potty trained 8yr olds, 16yrs olds, 20 yr olds etc Because Autism does severely affect many. It is a spectrum disorder so it affects it individuals differently. Madasun is 6yrs old. She is non verbal, still in pull ups, she goes through phases of insane sleep patterns(weeks sometimes months of only getting 2-3hrs of sleep a night) she has severe sensory issues when it comes to food, certain clothing and noises. She can have intense meltdowns out of no where and can harm herself. Routine changes are hard for her to understand, routine and consistency help ASD individuals. She is progressing(slowly but any progress is a HUGE deal to us) progress fills us with hope. She is very smart it is just hard for others to see unless they take the time to watch her. She is kind, genuine, funny, she does not judge others she is accepting of all, she does not care about your past, your mistakes, she does not bully or make fun of anyone. She respects every living creature and appreciates things in life that most of us are too busy or just unable to notice. She is an amazing little girl but she goes through things I pray no one has to endure, but millions do. I see her become frustrated from not being able to communicate. I watch her as she sees kids do things and the look of curiosity and a sort of sadness overcome her. I encourage her do anything, and make her try things but because her brain works the way it does, and because where she is right now she gets frustrated because she wants to do them but the kids might not know how to play or talk to her, the coach doesn't know how to explain it to her, the movie theater is too dark and too loud...she wants to be there but her autism makes her react to things in a way she cant control and that is frustrating to her. She is for the most part a very happy child, she enjoys a lot but I see her, I see her have sadness in her eyes because she is trapped in her head so to speak. Imagine being in a foreign place and no one speaks your language...I imagine it is similar. My heart breaks when I think how hard it must be to not be able to say what's on your mind, or if something happens that excites you or made you happy, or sad, hurt etc.
I post so much on my personal page not only my Autism pages because most of my friends don't have a child with Autism, a lot of the people on my friends list have misconceptions, don't know much about it etc those are the people who we need to focus on spreading awareness to. Autism is not a discipline issue, a fad, or a simple personality trait. It is a very serious bio- neurological developmental disability. It ranges from mild to severe so when you know one person with Autism, you know one person...each is different. So please try to be understanding, don't judge, don't stare, don't make false ignorant comments. Learn about it, ask questions, get involved in a special needs event in the community try to put yourself in the shoes of someone with Autism. Try to put yourself in their parents shoes. Imagine your child is 6, 7 or 8+ and still has never said "I love you". Imagine seeing everyone rush off to the things you dreamed of when your child was born, dance, sports, slumber parties, bike rides with friends etc and them never coming. Imagine watching all the children you have watched grow up with your child at their Christmas program at school and your child not be up there, imagine having to fight tooth and nail to get your community or school to involve your child. Imagine your child not having any friends. My family is fortunate for a little girl in particular named Kaydence. She is the daughter of my best friend and she has been an unfailing friend to Madasun. She gets on her level and plays with her, doesn't push her, or make her feel less. She " speaks her language" because she has always opened her heart and understood and with out questions accepted. In our many conversations she has explained about accepting people who are different and how no one should judge them or not be their friend just BC they are different from you. I hope that every child on the spectrum mild or severe can have at least one friend like that. Teach your children about differences, different is not better or worse its just different. Teach them to accept others and respect them as human beings. Any child especially a child with special needs should never be treated less then that of their peers. No one asks for Autism, or ADD/ADHD, Epilepsy, Cerebral Palsy, Downs, Deafness, Blindness, behavioral disorders, mental disorders or developmental disabilities. They are bestowed upon them with out any say in the matter and they face challenges and fight battles daily.
Remember to appreciate your kids, listen to them, those conversations they try to have every second with you that may annoy you, are a treasure. Treasure the family nights at the movie theater, the family dinners, the Christmas programs, dance recital, soccer games, baseball games and so on because there are so many mothers and fathers like you who are fighting to help their children to do the things that come so naturally to those of us who our " nuero-typical ".
So this Autism Awareness Month learn about Autism, get involved, lend a smile instead of a stare or judgmental comment to the mom you see at the store whose child is stimming or is having a meltdown from a sensory overload. Attend an event, help a sports team incorporate a special needs child, ask questions and spread awareness. Autism is the fastest growing developmental disability, it affects 1 in 68 children in the US. There is no known cause, or cure. Researchers are making advances but the CDC and other health organizations and our government need to step up and take action and help individuals and their families who struggle everyday and for the children who fall through the cracks and are unable to obtain resources and the children who live is small communities like mine. You don't have to have a child with Autism or special needs to get involved, get involved because these are real children, that so very easily could have been yours. <3
Thursday, April 3, 2014
Intro...hello my name is Mallorie and I have a child with Autism...welcome
I am a 26 year old mother of two. My fiance, Thomas met in 2006, instant connection, love at first sight and all that jazz. We were living together after bareley a week of dating, we have been inseparable every since. We had our first child together Nov.20 2007, our daughter, Madasun Lee. A few years later we were blessed again with another beautiful daughter, Morgun Marie on Oct. 07, 2010. Madasun was diagnosed with Autism on December 23rd 2009. She is classified as having "classic Autism". She is non verbal but making progress in communicating. Having a child with Autism has grounded me. It has taught me more understanding,acceptance, patience and compassion. It has taught me to be more resourceful and determined. It has taught me inspiration, appreciation and strength. A type of strength I never knew i was capable of having. It has taught me the beauty of being different. Having a child with Autism means your life isn't an easy or "normal" one, but that doesn't mean it is not a good one. It is a different and challenging one.
Yes, I wish my child would talk. I wish I could hear "i love you mommy" or hear what my child is thinking or what they did at school. I wish that certain things didn't cause her to have painful sensory overload and suffer meltdowns. I wish we could go to a restaurant, a dance recital, soccer practice or swim meet instead of therapy, doctors visits etc. I wish my child could sleep normally instead of waking at up anywhere from 2-3am. I wish my child would eat more than 10 things. But I am thankful it was Autism and not leukemia. I am thankful I can hug my child. I am thankful my child smiles, can walk and run, that my child can see, and is healthy. I am thankful my child laughs, cuddles, sings and learns. I am thankful my child is making progress, no matter how big or small, no matter how fast or slow. I will celebrate every milestone she reaches no matter how slow, and no matter what I will never lose hope or the faith that I have in her. Thank you Madasun for all the magic you teach me to see in the world that others are often too busy to notice. You inspire and amaze me every day and I would not change our crazy, hectic, beautiful life for anything this world has to offer. I am proud that the lord chose me to be your mother and as God as my witness I will fight to free your voice and help you over come that bitch they call Autism.
Yep I called Autism a bitch, because if your honest with yourself it is. I am an optimistic person and I don't dwell on the darkness but my child is non verbal and has severe classic Autism and there will be times i hate Autism because of the struggles my daughter faces because of it. Autism is not what makes her special or makes her who she is. She is Madasun, and Autism is something she has it is not WHO SHE IS. This blog is our story, we have a crazy, beautiful journey and if our journey helps just one person then that's good enough for me. Ultimately this is my place to let it go and let it out.
Yes, I wish my child would talk. I wish I could hear "i love you mommy" or hear what my child is thinking or what they did at school. I wish that certain things didn't cause her to have painful sensory overload and suffer meltdowns. I wish we could go to a restaurant, a dance recital, soccer practice or swim meet instead of therapy, doctors visits etc. I wish my child could sleep normally instead of waking at up anywhere from 2-3am. I wish my child would eat more than 10 things. But I am thankful it was Autism and not leukemia. I am thankful I can hug my child. I am thankful my child smiles, can walk and run, that my child can see, and is healthy. I am thankful my child laughs, cuddles, sings and learns. I am thankful my child is making progress, no matter how big or small, no matter how fast or slow. I will celebrate every milestone she reaches no matter how slow, and no matter what I will never lose hope or the faith that I have in her. Thank you Madasun for all the magic you teach me to see in the world that others are often too busy to notice. You inspire and amaze me every day and I would not change our crazy, hectic, beautiful life for anything this world has to offer. I am proud that the lord chose me to be your mother and as God as my witness I will fight to free your voice and help you over come that bitch they call Autism.
Yep I called Autism a bitch, because if your honest with yourself it is. I am an optimistic person and I don't dwell on the darkness but my child is non verbal and has severe classic Autism and there will be times i hate Autism because of the struggles my daughter faces because of it. Autism is not what makes her special or makes her who she is. She is Madasun, and Autism is something she has it is not WHO SHE IS. This blog is our story, we have a crazy, beautiful journey and if our journey helps just one person then that's good enough for me. Ultimately this is my place to let it go and let it out.
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