I've been absent lately and to my readers I am sorry. Over the last year I have been battling cervical cancer, depression and my OCD, Anxiety and PTSD are all at their highest. It's been a challenging stretch of road... Shame and fear isolated me and when my best friend turned their back on me....And my children, my heart broke even more and I isolated deeper.
If it wasn't for my love, Thomas and my two beautiful girls I couldn't tell you where I would be. I'm still fighting, I'm still haunted by the crippling thoughts of what if I am taken from my girls before they are ready...before I am ready. I can't describe the way it feels to look at your autistic daughter and worry what might happen to her when you're old and physically can't do it anymore, or when you've parted from this world...but even worse is worrying you might not be around sooner than you thought and your faced with those fears now, your 8 year old and 4 year old
... the thought of leaving your children before they are ready or old enough to understand is absolutely heartbreaking and terrifying, I'm not ready to go into it. I can't bare the thought but deep down I know that it is a reality and it's a fate I will fight against and win or I will fight it until my last breath exhales from my lungs, until my heart beats it's last beat, all the way until the last electrical impulse in my brain fires, I will fight.
I am confident I will conquer these challenges but I'm a realist and I know that the possibility of the darker outcome is a reality. But I will fight to be there for both of my girls. I will fight for milestones, and time, driving lessons, school acheivments and graduations, proms, and heartbreaks, college or travels, wedding bells and grandchildren. I will fight for my days with my soulmate, more dates with him, more adventures, I won't give up on that vision of two old bastards in rocking chairs on a porch by a lake somewhere.
When I get really low in these thoughts I take comfort in knowing if it does go this way that my girls have the dad they do. A dad who is not afraid to play princess tea party, or style their hair or sport a my little pony backpack at the beach. A dad who helps with laundry, and bath time, that can fix things and make smiling pancakes for breakfast....gosh I love that man, and they have the grandparents they do too, two of the most wonderful grandparents a child could ever be lucky enough to have. It eases my fear a little but honestly still doesn't ease the pain that is felt while pondering such a morbid fate. I will look to the brighter alternative and I find much comfort there, I believe in myself and I choose to stay positive.
It's been a long while since I've sat and wrote. Writing has always been and is my release, it's my passion, my art. It's been what gets me through some pretty dark days. Lately I've been too depressed, too sick, or too consumed by pain caused by the actions of others to do it but I've had enough and today I'm writing again and I can already feel a sense of release, a sort of light glowing and growing inside of me again. I'm someone who caretakes, counsels, comforts...everyone else but me that is. I spend all my time and energy on others I forget to stop and be there for myself. I don't usually share my problems or internal demons because I've always been the one to comfort and listen to others, and I just push my stuff aside and deal...that is not healthy, and I am making an effort to change that. Everyone thinks im strong, i guess i am but the problem with that is when you're the strong one there is no one checking up on you or asking if you're alright. Everyone just kind of assumes you are. In the past anytime I have tried to open up or needed some one they either were unavailable or they just flat out didn't listen, so it made me stop trying. It made me feel unimportant or like a drama queen, like I'm weak.
No one knows the dark roads I've traveled by myself, the storm's I've weathered alone, no one knows the heartache I've felt, no one knows, not even the ones closest to me. Few people understand what it means to really be there for somebody. And that’s the toughest part about being on a journey, you realize the main ones that said they will ride with you, are the first ones to jump off. People make promises when the sun is shining and then make excuses when the storm comes. That’s why I am always thankful for the rain, it has a tendency to wash away what is unnecessary. The reality is, you could be amazing, genuine and sincere but still be overlooked. Having a good thing is so hard because meeting a strong person is so rare. So I’ve learned to understand when people run from me, don't chase after them. No matter how hard, no matter how good they are at faking they care.
Madasun still paces looking for our friend, she is cut of a similar cloth than I and her autism makes her even more sensitive, she doesn't understand why people leave. She knows she loves someone and now they are gone. Watching her heart break in silence over it kills me and infuriates me. Some people don't understand, but when your child has autism and you have people you feel at ease with, comfortable with, and love and they love your child and treat him/her like a person, they acknowledge them instead of ignore them, you appreciate that beyond what mere words could only ever attempt to describe. You cherish those people and when they turn out to be the opposite of everything they convinced you they were, it feels like red hot iron rod stabbing you straight through your heart. I've learned how much you think you know you really don't know shit. Most people are out for themselves and their concern and loyalty to stops the day you no longer meet their need for you. People are assholes.
Some don't understand why I try with certain people, why I give out chances when I clearly should walk away, it's my nature. I'm an empath, I'm a lover, if I care I care 100%. I hug those who hate me if I see them cry, I smile at an unfriendly face, it's what I do.
Most of my life has been spent trying to shrink myself. Trying to become smaller. Quieter. Less sensitive. Less opinionated. Less needy. Because I didn’t want to be a burden. I didn’t want to be too much or push people away. I wanted people to like me. I wanted to be cared for and valued. I wanted to be wanted. So for years, I sacrificed myself for the sake of making other people happy. And for years, I suffered. But I’m tired of suffering, and I’m done shrinking. It’s not my job to change who I am in order to become someone else’s idea of a worthwhile human being. I am worthwhile. Not because other people think I am, but because I exist, and therefore I matter. My thoughts matter. My feelings matter. My voice matters. And with or without anyone’s permission or approval, I will continue to be who I am and speak my truth. Even if it makes people angry. Even if it makes them uncomfortable. Even if they choose to leave. I refuse to shrink. I choose to take up space. I choose to honor my feelings. I choose to give myself permission to get my needs met. I choose to respect myself and cut anyone out of my life who is toxic to my soul. I choose to live as me and not as what anyone else wants me to be.
Saturday, September 19, 2015
Thursday, September 17, 2015
I haven't been blogging as much over the last year. Our lives have been shaken, rocked, rolled, shredded and ginded. So much in such short time. I don't know where to start, im sorry to my dedicated followers whom I left during this time. I realise how much I need all of you, when I write I am relieving alot of things, and sharing the joys brings me happiness and when I share my trials and tribulations and help another in the process I can't describe the joy it brings me. This is my therapy but at its core I started this to reach others, to connect and to help any one feeling similar. You aren't alone. Your family is not alone, your child is not alone. Your child is winderful, your child is loved, your child is worth it!
Madasun recently endured a heartbreak that I can't quite go into with out choking on tears my self, but I'm almost finished with rthe piece and if anyone else out there is going through the same I hope this entry will help you and remind you how worth it you are. The ones who leave you are the ones who loose something valuable. Stay tuned....it's time to reorganize the toys before her majesty arrives!
Madasun recently endured a heartbreak that I can't quite go into with out choking on tears my self, but I'm almost finished with rthe piece and if anyone else out there is going through the same I hope this entry will help you and remind you how worth it you are. The ones who leave you are the ones who loose something valuable. Stay tuned....it's time to reorganize the toys before her majesty arrives!
Wednesday, November 26, 2014
Surviving Thanksgiving
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!
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!
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.
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