From Birth we are at War

From the day we are born, we are at war. God says “For we do not wrestle against flesh and blood (humans), but against principalities, against powers, against the rulers of the darkness of this age, against spiritual hosts of wickedness in the heavenly places. (Satan and his demons).” Ephesians 6:12 New King James Version (NKJV)

From birth we are at war, and the battle continues until our last day on earth, when God calls us home and we’ve “fought the good fight.” 2 Timothy 4:7 says “I have fought the good fight, I have finished the race, I have kept the faith.”

I will now briefly mention that as a Christian, I believe in what the Bible teaches about Satan and his demons whispering thoughts into our ears and manipulating our circumstances in trying to destroy us. I am not going to go into it too deeply, however, for those interested, http://www.discipleshipdefined.com/resources/temptation-and-testing has an excellent article about how Satan “tries to crush us under the weight of hardship or pain. He tries to urge us toward a wrong fulfillment of natural desires. ⁷He tries to make us complacent, careless and self-assertive. ⁸He tries to misrepresent God to us and create false ideas of His truth and His will.⁹  Matthew 4:5 demonstrates that Satan can even quote (and misapply) Scripture for this purpose.” Joyce Meyer has written an excellent book  on this very subject called “Battlefield of the Mind.” So how do we stand against these attacks from the devil? Prayer, trusting God, and putting on the full armor of God every single day of our lives. (For more about putting on God’s armor, see Ephesians 6:10 of the Holy Bible, or go to this link https://www.biblegateway.com/passage/?search=Ephesians%206:10-18)

I’ve fought many battles over my 44 years on this earth. I’ve battled depression, low self-esteem, most recently anxiety and negative thoughts. There have been days when nothing has gone right, the easiest tasks have become ten times harder than necessary. There have been days after my son Austin’s death that I thought, “What is the point of all this, really?? Why are we put here to suffer? Why do we have to do the same repetitive thing, day after day, week after week–get up, go to work, exercise, make dinner, get cleaned up, try to relax, go to bed, etc. etc. etc.” These were definite battlefields in my mind.

From the day my son Austin was born, he entered a war. His war was much more difficult than mine: as a severely autistic individual, he struggled to communicate, couldn’t speak, and couldn’t make his body cooperate with what his mind wanted it to do or not do. His war was much bigger than mine, but his battles are now over. His race has been finished. He has won the good fight of faith, and he has been welcomed into the Heavenly throng, where God and Jesus have surely taken him into their arms and said, “Well done, my son.” He is at peace.

I am a Christian with a strong faith. My faith was not shaken with Austin’s death–it is what I clung to to make it thru those dark hours, and what I still cling to. Coping with his death is a battle that my daughters (his sisters) are still going thru. But his death caused my family to come together –to help each other deal with the pain of losing him. And I have realized that this is the point: to help each other.

1 Thessalonians says “Therefore encourage one another and build each other up, just as in fact you are doing.” Jesus said in Mark 12:31 “‘Love your neighbor as yourself.'” Jesus agreed to become a human in order to experience our struggles and our battles–to be our intercessor and our Savior. In dark times, we are to surround ourselves with others who care about us, support us, and we are to the care about and support others when they go thru their own dark hours.

I cannot count the number of times that a friend, family member, acquaintance, or co-worker has confided to me their troubles, and their situations were something that I had already gone thru. Had I not gone thru those same circumstances, I could have never helped them to the extent that I did.

I think this is what “the point is” to this thing called “life.”  John 1:5 explains, “The Light shines in the darkness, and the darkness has not overcome it.“I believe this is what God wants us to do: Help each other. Be kind and compassionate to one another. Help each other to run our race and to fight the good fight of faith. Be “lights among the darkness.”

“Austin, that dog is not a ball–don’t try to kick him!” Austin’s Reaction to Pets/ Pet Therapies for Special Needs Children

So this election and its aftermath has turned my brain into mush, and I feel a weird desire to binge on kitten videos…or puppies…or anything cute to distract me from the hate that’s filling Facebook and the news right now. I turn on the news and it’s more violence, as people are protesting our new President-Elect. So I go back to the kitten and puppy videos, which then reminds me of how Austin reacted to pets.

Being autistic, Austin thought that anything small and close to the ground was a ball that needed to be kicked. I had to be extremely careful when visiting friends who had pets that Austin didn’t send them flying. So I’d have him firmly in my grip as we approached the pet, and I would hand-over-hand show him how to touch the dog or cat and be gentle. He usually caught on pretty quickly, but I never left him alone with one, just in case.

We had a cat named Frisky (he lives with Ashley now), and Austin ignored Frisky for the most part (after being repeatedly discouraged from kicking him–he really thought Frisky was a ball!)–until he discovered that if he batted at Frisky, Frisky would swipe back. They used to play this game where Frisky would sit in the bow window in the living room, sunning himself behind my sheer curtains. Austin would be rocking right next to that window, and with his need to tap things, Austin would tap the curtains right where Frisky was lying. Frisky would bat back, and they would do this for a few minutes until Frisky had enough and ran off. It was pretty amusing!

Pet Therapy can greatly benefit a child with special needs. Iancommunity.org explains that “There are several roles an animal may play in the life of a person who is ill or living with a disability, from brightening their day to protecting them from harm. It has also often been suggested that a variety of animals, from horses to dogs to dolphins, can provide actual therapy for a person. For example, it has been claimed that they can soothe the emotionally distressed, relieve physical pain, reduce heart rate and blood pressure, help with development of motor skills and, in the case of people with ASD, reduce stereotyped behavior, lessen sensory sensitivity, and increase the desire and ability to connect socially with others” (Please see bottom of post for article link). After looking into therapy dogs for Austin, I realized that the concept is awesome, but it wouldn’t work for our family. Therapy dogs are not supposed to be “family pets”–their main function is to solely assist the person with special needs, and with having two other children, I knew that this would not work out. So I tried to compromise by getting a black labrador puppy. She seemed to be the calmest one in the litter–HA was THAT deceptive!

My girls named her Roxy, and we had her for a couple of years. She would not calm down, no matter what I tried to do with her, and as a result, instead of calming Austin, she would get him more riled up. My girls were good with Roxy, but we really did not have the time to work with her, and to walk her as often as needed. Austin took up 99.9% of my time and I also worked part time. The kids’ father worked at night and slept all day. When the girls got home from school, they would take Roxy for a walk (or rather SHE took THEM for a walk), but then they had homework to do. We had a fenced-in yard that Roxy loved to run around in, and a doggie door that she could go in and out of at will, but she really needed walked more than what we were able to take her.So Roxy ended up living with a wonderful retired couple that my sister knew, who owned a farm. The girls were able to visit her there a few times, and although they missed her, they were happy to see her loving life 🙂

Having a dog can be a wonderful way to assist your child with autism/special needs. Children and Disabilities Information describes the three different types of dogs that are used to help individuals with special needs (please see bottom of this post for article link): “An Assistance or Service Dog is trained to perform specific physical tasks to assist a person with a disability, such as opening doors, turning on lights, retrieving dropped items, carrying things, and alerting to sounds. These dogs are normally trained and certified by assistance dog organizations and have full public access rights under the ADA law. A Therapy Dog is trained in basic obedience that provides companionship but does no specific tasking. These dogs are often graduates of assistance dog organizations and especially suited for this work because of temperament. They normally do not have public access rights and work mostly in the home. However, they are often invited to accompany the child into public places. A Companion Dog is a family pet with no specific training or certification. They do not have public access rights.All three of these kinds of dogs will, if partnered correctly with children, provide the most important service of all: love, affection, acceptance, and companionship to children too often disenfranchised and lonely. In fact, in many cases, having a four-legged furry ‘best pal’ will act as a social magnet, attracting other children, and therefore promoting positive relationships that might otherwise be difficult to achieve.”

 In order for a dog or a pet to benefit a special needs child, the child must show a strong affinity towards the animal. If a child does not seem to like or be interested in the animal, this type of animal therapy will not benefit them. Austin seemed pretty apathetic towards Roxy and Frisky, but when we’d visited friends that had pets, he seemed very curious. Austin liked having  things his way of course lol, so when our pets did not go along with his “plans,” he lost interest very quickly.

Children’s Disabilities Information lists the following tips for determining if your child would benefit from having a service dog, and this would apply to other pets as well:

1. Visit an animal shelter. 2. Watch the reaction/interaction of the child with dogs of friends and family. 3. Find a service dog organization in the area and ask to visit (most such organizations welcome the addition of children and strangers as they train their dogs and it is a good environment in which to assure that the child is not in harm’s way from
unknown animals). 4. Rent a movie about dogs and see if the child is interested. 5. Read children’s books about dogs. 6.Watch a lot of animal planet shows about dogs. 7. And, of course, have conversations with the child (if possible) about how they feel about dogs.

 

Therapy pets can be a great benefit to your special needs child. Although Austin was apathetic to animals, some children respond wonderfully to them. If you are interested in Animal Therapy for a special needs child, PAWS for People     (http://www.pawsforpeople.org/), Comfort Caring Canines (http://comfortcaringcanines.org/wpp/), and KPETS (http://www.kpets.org/) are good places to start with to research and find information about pet therapies.

Take care everyone, PEACE, and THANK YOU all veterans on this Veteran’s Day 2016!
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*Children’s Disabilities Information article link “Considering a Therapy or Service
Assistance Dog for Your Special Needs Child? Pros and Cons”
http://www.childrensdisabilities.info/therapy-service-animals/therapy-assistance- dogs.html

*Interactive Autism Network (IAN) article link “DOGS, HORSES AND ASD: WHAT ARE ANIMAL-ASSISTED THERAPIES?”
https://iancommunity.org/cs/articles/asds_and_animal_assisted_therapies

Surviving the Holidays without Loved Ones

With the holidays around the corner–and this being the first year that I will be unable to spend them with my son Austin–I suddenly found myself in a huge funk. Last week and this weekend were rough…I felt myself spiraling into a deep dark hole of depression–one that I just could not pull myself out of.

I tend to be a very upbeat, optimistic person. Although I do get down at times, I am usually able to distract myself back to normalcy fairly quickly. But this past week, all of my efforts failed, and I just could not get rid of the persistent sadness. The caring of wonderful friends–both on Facebook and in “real life”– finally pulled me out of this deep dark pit.

 Whether they’ve passed away, or they live far away from you, facing the holidays without loved ones can be really tough. Belovedhearts.com has this to say about mourning during the holidays (please see link at the bottom of this post for more information): “Grieving during the Holidays is difficult. Especially the first Holiday cycle after the passing of a loved one…[but] your holidays can still be a significant time for you. They will be different, but they can still be meaningful. They may hurt, but they can also hold hope — even great hope.”

Belovedhearts.com suggests the following ways to cope during the holiday season: 1. Accept the likelihood of your pain–be aware that this time of year can be painful, but it is proof that you have loved someone immensely, and you have shared great times together. Pulling out pictures of your loved one and reminiscing can be one way of handling this pain. Ignoring the fact that your loved one is gone (and trying to go on like everything is “normal”) is a very unhealthy way of dealing with their absence–it is better to just acknowledge their absence and the sadness of missing them, share memories of them,
and enjoy the time that you are having with your other loved ones. 2. Allow yourself to feel whatever it is that you may be feeling–my grief therapist told me to just cry if I have to cry…no matter where I am or what I’m doing, I am supposed to just cry if I need to. I have cried passing the fruit snacks (Austin’s favorite snack) in the grocery store aisle. Owning your feelings is a healthy way to grieve, instead of trying to suppress them or cover them up. If you’re in the middle of carving the Thanksgiving turkey or the Christmas ham this year, and you feel the waterworks coming on, take a moment to just have a good cry. Laugh about it afterwards, and continue with your festivities–your guests will understand. 3. Take charge where you can—losing a loved one can make you feel completely out of control. Try to take back some control in very small ways, like focusing on your health. Eating better, drinking more water, exercising, and getting more sleep, are all things that you can control, and will also benefit your health. It is important to take care of yourself during the grieving process, and to take some control over your life. Personally, exercise helps me tremendously–yesterday was extremely hard for me to get through and I forced myself to do some workouts on youtube. By the time my workout was finished, I still felt crappy, but better, as exercise has been proven to raise serotonin levels (the “happiness” hormone 🙂 ).

Grief.com makes the following suggestions to get through the holidays without your loved one (please see bottom of post for article link): “You can and will get through the Holidays. Rather than avoiding the feelings of grief, lean into them. It is not the grief you want to avoid, it is the pain. Grief is the way out of the pain. Grief is our internal feelings and mourning is our external expressions. [Some] ways to externalize the loss [and] give it a time and a place [include the following]: [1.] A prayer [or sharing memories] before the Holiday dinner, about your loved one. [2.] Light a candle for your loved one. [3.] Create an online tribute for them. [4.] Share a favorite story about your loved one. [5.] Have everyone tell a funny story about your loved one. [6.] [If you have a] place of worship, remember them in a prayer. [7.] Chat online about them.”

 If your loved ones live far from you, and travel is not an option, one
way to spend time together is through skyping or facetime. Eating holiday meals and opening presents together on skype or facetime is one option to spending time together without being in the same place. Other ways to connect with family members who live in other states (or even other countries) during the holidays include calling, texting, sharing a blog or facebook group/page together, and online Advent calendars (http://monkeysandmountains.com/online-advent-calendars-perfect-for-travelers).

Holidays can be very difficult without family members, but there are ways to get through it. The Holidays are supposed to be happy times, so my plan for this holiday season will be to include memories of Austin in everything we do. After the Thanksgiving meal (which I plan on spending with a friend), I will put up my Christmas tree as usual, and even though Austin won’t be here to help me, I will still make his gluten free/dairy free cookies and play Christmas music on Youtube while decorating. I plan to make a special ornament for the tree to memorializes him. On Christmas Eve, I will go to the cemetery, light a candle, drink some eggnog, and spend some time with him. Christmas day will include the meal that he loved, watching the parade on tv, and remembering him with stories, photos, and his favorite music. I won’t focus the holidays solely on Austin, but I will take moments to remember him throughout. If I cry, I cry…if I feel sad, I will allow sadness to sit with me for awhile before moving on to a nicer emotion…if I feel joy, I won’t suppress it out of guilt–our loved ones would want us to be happy. I will just go with the flow this holiday season, embrace the memories of Austin, and enjoy the time I am spending with my family and friends.

Take care everyone and enjoy the seasons!
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*Grief.com article “Grief and the Holidays–Dealing with the Pain”
   http://grief.com/grief-the-holidays/   

*Belovedhearts.com article “Grieving During the Holidays”
  http://belovedhearts.com/grief_center/Holiday_Grief.htm  

 

Sunday Lunches…Sometimes Chaos, Sometimes Fun, Never Boring

As I’m enjoying my coffee on this chilly fall Sunday, I’m reminded of the times when my children were younger, and we would go out for Sunday lunches. I would always take them to Hoss’s–Austin behaved better in buffet-style restaurants, where you could immediately dig into your food, vs. waiting for the waiters to bring it to your table. His sisters, Ashley and Amber, would assist me in bringing him into the restaurant, and they would help to keep him under control as we stood in line to order our food.

 I tried to time getting there a half an hour after the restaurant opened (11:30am) to avoid the opening line, but there were usually a few stragglers still waiting to order when we got there.  Austin was mostly patient –sometimes he’d make loud noises, and try to tap the railings that they had set up, but he could usually control himself until we sat down at the table. I would look at the menu online the night before so that we’d know immediately what to order, and this eliminated any extra time standing there trying to figure it out in front of the cashier. With Austin, it was key to get to the table (and food) as soon as possible to control his behavior (If we did get stuck in a line, I would give him the snacks I had tucked into my purse the night before to keep him occupied).

After ordering with the cashier, we would be led to our table. I would immediately explain to the waitress that my son is autistic and he has trouble with waiting, so could she please give us a container for left-overs right away, as well as the bill, in case he happened to have a meltdown and we had to make a quick getaway.

The waiters/waitresses were always nice and very accommodating. After giving our drink orders to the waitress, we would immediately high-tail it up to the salad/soup/bread/ pasta/desserts bar and fill our plates. Austin LOVED salad, so I would pile his plate high with lettuce and veggies, Italian dressing (after verifying that it was cheese and dairy-free), tortilla chips and salsa. I’d either go back to get my salad, while leaving Austin in the care of his sisters at the table, or if he was being nixey that day, I would get mine at the same time that I was getting his, tightly clamping his arm under mine, while balancing our plates in my two hands, and doing the shuffle back to our table…I am proud to say that I never spilled our plates lol, despite how uncoordinated I am, and Austin diligently trying to yank his arm free 😀

 Austin was a VERY messy eater back then. He had very poor fine-motor skills. I’d usually sit right beside him and eat my food left-handed, while trying to assist him in using his utensils at the same time. Usually after 2 bites with the utensil, he would abandon it to use his fingers, and I’d have to say “use your fork” while literally curling his fingers around the fork for him to continue using it (ordering french fries, and cutting his steak into pieces helped with the mess, as well as my ever-present wipes). Austin would sometimes try to stuff everything in his mouth at once, so at times I’d have to monitor how much food he put into his mouth with each bite.

Usually Austin was finished eating before any of us, and sometimes extra tortilla chips and salsa would help him to stay sitting, but most of the time he would sign “all done,” stand up, and immediately try to climb over me to go back to the car–when Austin was done, he was DONE! So after he’d sign “all done,” I would hurriedly scrape the uneaten food into the container and we’d rush out to the car and head home, where the girls would either finish their meals there, or eat it later as a snack. If the weather was warmer, we’d sometimes stop at a playground before going home, but my girls were actually too old by this time to really enjoy it, so many times I would just drop the girls off at home and then take Austin there or to Chocolate World (the girls were really tired of Chocolate World also after going there almost once a week from the time they were toddlers).

What helped me the most with taking a younger Austin out to eat was the TSS working diligently on this goal also. A few times a week, the TSS would help Austin with having patience in a restaurant–the first trip with the TSS to Wendy’s lasted about 10 minutes, from the time we went in with our food (I ordered it at the drive-thru first) until the time  Austin signed “all done.” We eventually worked up to 45 minutes. The Vista School staff helped an older Austin by taking him out to restaurants two or three times a week, which included standing in line with him to order, having food available for him to eat between the time of ordering at the table until it was delivered to the table, and helping him to cope with waiting to leave until everyone at the table was finished eating (headphones/music worked immensely with this).

I must say that I was never brave enough to stand in lines with Austin to order food. Although he behaved really nicely in lines for the TSS, school staff, and my husband Amir, I am Mom, and as a rule, kids usually love to be a little more nixey for their mothers than for everyone else 🙂

Lenard Zohn, the father of an autistic son, has this to say about going out to eat with an autistic child (to read the article, please click on the link below at the end of this post): “As most parents will tell you, taking young kids to dinner can be challenging. The kids can get bored, fidgety, tired, no longer like a favorite food or only want to eat dessert. And kids on the autism spectrum may have food sensitivities. My son Adin was no exception, and going out was stressful until we mastered [some] techniques.”

Some of Zohn’s techniques include 1. Advance work (make sure that the restaurant’s environment will not be over-stimulating to your child before taking him/her). 2. Make a reservation or use call-ahead seating to avoid a long wait. 3. Talk to the manager ahead of time to let them know that your child’s autistic and that you will need your food as soon as possible (most managers are very accommodating). 4. Look at the menu online
beforehand and choose (or have your child choose) their meal ahead of time (also call the restaurant to make sure the meal is free of ingredients that your child is allergic or reactive to). And keep in mind that if your child refuses to eat anything that’s not pizza, do not take him/her to a Chinese restaurant. 5. Prepare them ahead of time for the outing by explaining where you’re going, who will be there, how they will have to behave (ex. You’ll need to be quiet and stay seated while eating) and what food they’ll be eating via a picture story, conversation, etc. 6. Bring toys and snacks along to the restaurant to keep your child from getting bored and impatient while waiting for the food.

I’ve had really fun experiences taking Austin and my girls out to restaurants. It was our time to just sit down and enjoy being together. Although I was stressed out 99.9% of the time, I still tried to relax and make it enjoyable for the kids. When Austin got nixey, we  would just pack up our food and leave…sometimes that happened and there was not much that could be done about it. My girls were good sports, and I’m proud of them–I know it wasn’t easy for them during the times that Austin got a wild hair…his hooting and hollering as we were leaving the restaurant mid-meltdown drew alot of stares, and I’m sure they got embarrassed sometimes, but they never complained. It was Russian roulette with Austin–sometimes he’d be a perfect angel, and other times he’d be a hot mess, but I never stopped taking him out to eat–we just tried to deal with things as they came. I have tons of good memories of our Sunday lunches, and whenever I pass a Hoss’s, I have to smile.

Take care and Happy Sunday!
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*The Mighty “10 Tips for Eating Out With a Child on the Autism Spectrum”:
https://themighty.com/2016/06/tips-for-going-out-to-eat-with-an-autistic-child/ 

Being More “Present” and Enjoying Our Time with Our Children

One of my biggest regrets as a parent (and I have a few) is that I didn’t focus on the enjoyable moments more with my kids when they were younger, and that I wasn’t more “present” in those moments. Ashley is a week away from being 21, Austin was 19, and Amber is already 17, and it has all been truly a huge blur.

I was so exhausted when they were younger (hugely due to a severe lack of sleep) that I  mostly remember taking care of their needs…is everyone fed? Check! Are they bathed/clothed?? Check! Am I spending enough time with each of them? Half-Check! Are they not killing each other? Check! Is Austin staying out of trouble?? Check! I was so focused on taking care of their needs that I rarely took time out to simply enjoy the moments with them.

“Mindful parenting.” is another term for being “present” in the moments that I spent with my children. Psychology Today describes “mindfulness” as “a state of active, open attention on the present… Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.”

I DO remember experiencing this mindfulness on outings to birthday parties, and during our yearly trips to the beach. It was heart-warming to see my children enjoying themselves, their friends, and each other. The girls would pitch in at times to help their brother if he was having difficulties, and it was nice to see that their assistance was due to them wanting to –not because of my urging.

I wish I would’ve focused more mindful of such moments every day. To enjoy the times I shared in the living room with Austin, watching his music videos. To enjoy more of the moments that I had with Ashley and Amber, helping them with projects or just talking to them. I wish I could’ve spent more time talking to Ashley, and watching movies with Amber. But the past is in the past and cannot be changed–all that can be changed is the future.

In a Parents.com article, Harley A. Rotbart, M.D. (from Parents Magazine) has this to say about spending quality time with your children, and being more present in their moments (see link below for entire article): “Each day with young kids feels like a week, each week like a month. Yet as every birthday passes, the years seem to be streaking by at warp speed. Five-month-olds become 5-year-olds in the blink of an eye, and then 15-year-olds. This inexorable march of time that turns babies into big kids is the “other” biological clock facing young couples. Every day brings new growth, new milestones, and new wonderment, but the challenges of juggling our adult lives often prevent us from fully appreciating the delicate nuances of childhood. We’ve heard about slow parenting, attachment parenting, and tiger moms. However, over my past 30 years as a pediatrician, I have learned that there is a single truth that applies to any parenting philosophy: Your children need to spend meaningful time with you. They need to see who you are and how you live your life. And in return, they will help you to better see who you are.”

Dr. Rotbart suggests pajama walks (getting the children completely ready for bed (teeth brushed, pj’s on and everything), then slowly meandering around the neighborhood together, talking with them), taco nights (having special themed meals regularly that they help you prepare and enjoy together), repairing things together (a great way to spend time with them while teaching them about tools and life at the same time), playing their games with them (even video games!), and enjoying special treats with them (ice cream on hot days, popcorn while enjoying movies with them) as ways to connect with your children and spend meaningful times together.

Since my children are older, and their younger years have passed me by at lightening speed, I am now trying to be more mindful and present in my interactions with them. I’m really enjoying my conversations with Amber about life in general, how her day is going, and what her plans are for the future. I look forward to the times that I spend with Ashley, when I visit her at her apartment, or when she stops over to visit Amir and I at mine–it’s really cool to see her living on her own, enjoying life and being responsible. And towards the end, I really cherished hanging out with Austin, taking him to McDonald’s and the playground, watching his videos and singing along until he was breathless with laughter (he always laughed at my attempts to sing lol).

In today’s times of constant technology, busyness, work, and social commitments, I think it’s important to hit the “pause button” once in awhile, and to really just be conscious in the times that we are spending with our loved ones–to be completely in the present with them, and to enjoy our times together. As I have learned with Austin, life is so short–even though life can be difficult, it is important to try to enjoy as many moments as you can.

Happy Thursday Everyone, and ENJOY your day 🙂
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**Featured Picture: top (from left): Austin, Amir, Me, Ashley
                                         bottom (from left): Ashley, Amber

*Dr. Rotbart’s article in Parent.com:
http://www.parents.com/parenting/better-parenting/positive/quality-time/

*Other articles on spending more quality time with children:

  Seven Ways to Enjoy Your Children More: 
  http://www.huffingtonpost.ca/jessica-holmes/family-time_b_1703394.html 

  Did you forget to enjoy your kids?
  https://familyshare.com/21817/did-you-forget-to-enjoy-your-kids

 Relax and enjoy your kids:
 http://www.theparentingplace.com/teaching-values/relax-and-enjoy-your-kids/

 

Living a Fulfilling Life in Spite of Autism

When Austin was diagnosed autistic, my heart sank to the bottom of my shoes. I didn’t know then about successful autistic individuals like Albert Einstein, Wolfgang Amadeus Mozart, and Temple Grandin–even celebrities Dan Aykroyd and Daryl Hannah have recently been diagnosed on the spectrum  (mild aspergers). The only thing I knew about autism was from Sylvester Stallone’s description of his son–rocking in a corner, and banging his head against the wall.

Although Austin was not high-functioning like those listed above, he did end up having, what I consider, a very fulfilling life. He was very loved by those who knew him. He was well-liked by people, even strangers. At the end, he had experienced four months of living  independently with roommates, learning rapidly new ways to take care of himself, going on fun outings with Home staff, and even working at different jobs! His days were kept very busy with school, outings, chores, work trials, and lots of visitors. In his downtime, he was not just huddled in a corner rocking–yes, he was rocking in his rocker watching Youtube music videos lol, but he was being constantly interacted with–either by relatives and friends who were visiting, by his roommates, or by the Home staff.

Minerva Siegel, a happily married adult with autism, has this to say about living a fulfilling life while dealing with this disorder (see bottom of page for post link): “There’s life after an autism diagnosis, and even though it presents a lot of unique challenges, it’s possible to live a fulfilling and beautiful life with it. I don’t see it as some horrible thing to be fixed–it’s part of who I am.  I love my colorful, vivid mind, intense imagination, fierce intellect, and rather impressive inclination to excel in all language-related endeavors…I’m happy.”

Now I want you to know that not everything was always rainbows and unicorns for Austin–he (and his sisters!) definitely went through some hard times. For five years (on the days that I didn’t have him) he lived with a stepmother who, at first, probably tried to do the best that she could with him, but ended up becoming extremely overwhelmed and contentious–unable to handle his high level of needs. He went through me–his mother–being gone for awhile, when I got stuck in Egypt; trying to get my Egyptian husband  through the immigration nightmare that was required for him to live in the US during the Arab Spring (on a side note–my sister and parents were an invaluable help to my children during this time, and I will never be able to thank them enough for stepping in and making sure that my kids were taken care of ). He went through MANY frustrating moments of trying to communicate that sometimes led to him being misunderstood. He suffered through constant stomach pains due to poor digestion and constipation (even though we did the best that we could to deal with this issue, it was never completely resolved for him), as well as sometimes uncontrollable impulses to tap things, and becoming over-stimulated.But despite all of the hardships and the frustrations that this disorder (and life) can cause, Austin remained a good-natured, happy, cheerful, affectionate, and loving person.

Autismsupportnetwork.com suggests the following tips to help you increase the chances of your special needs child with living a happy, fulfilling life (please see bottom of post for link to article): 1. Start now to develop a formal or informal circle of support for your child in order to insure that there will be people in their life who are not paid to be there.  2. Work on developing social skills with your child so they learn how to do things that will connect them to other people. 3. Encourage their interests and favorite activities–it could lead to friendships and a future career! 4. Think about each area of life (residential, friendships, recreation, etc.) and write down (have your child help you if they can) what you believe your child needs in these areas in order to be happy. Seek the help of caseworkers, teachers, and other professionals who know your child well if you need help with this. 5. Enjoy your child, and help them to contribute to society (by becoming a friend to an elderly person, joining a group of volunteers that help to improve the community, etc.)

When Austin graduated to the Vista High School, I was given a form to fill out that had a ton of questions like the ones above–what was my goal for Austin after graduating from Vista…did I see employment in his future (I actually didn’t, but I was hopeful, and he definitely exceeded my expectations with this one!)…did I want him to live independently (Yes)…would I like him to go out into the community often (YES)….do I think friendships are important, etc. The Vista Staff took my answers from this  questionnaire and made IEP goals from what I had listed as important. They worked with him on behaving  appropriately in stores. They took him out to restaurants frequently. When living in a residential home was about to become a reality for Austin, the Vista staff went with me to research different homes–asking the homes’ staff questions that I would have never thought to ask. Once a Home was decided upon (in a happy coincidence, it was Vista’s first Home!) the Vista staff helped Austin to transition into living independently by visiting the Home frequently during school hours, and by helping him to shower independently (he had needed assistance with showering before moving into the Home–after living there for a month, he was completely independent with this task!).

In spite of all the challenges, Austin was able to live a happy, (mostly) independent life. He had friendships with his roommates, as well as students in his classroom, and with the various adults who were in his life. He loved music, and connected with people through that love–I’ll never forget the Home staff member, Marta, and Austin’s roommate, Stefan, dancing with Austin to Justin Beiber, while his other roommate Christian smiled, watching from the sofa  🙂 Austin got to experience working through many successful job trials, and he enjoyed frequent outings into the community. Austin also LOVED church–Stefan’s mother told staff about her church that offered a special need’s service every Saturday (it was mostly music), and I’ll never forget being told the story of how Austin actually got MAD because the church service was over and he had to leave. If you would’ve told me a year ago that Austin would have been able to just SIT through a church service and be quiet (much less actually ENJOY it) I would have never believed you!

On Austin’s very last day on earth, he spent that whole afternoon doing his absolutely favorite activity–swimming! He spent the day swimming at my sister’s house, in the company of my parents and his sister (Amber), aunt and uncle (I had spent the day before with him). He had the best time, was smiling and laughing, he had been to the playground with the Home staff earlier in the day, and he spent that evening relaxing and rocking to his favorite music videos. He was happy and content. After having the best day ever, he fell asleep that night in his warm, comfy bed…and woke up in God’s arms.

If you are a parent, relative or friend who is worried about a special needs child having a happy and fulfilling future, please know that you are not alone, and that it IS POSSIBLE! Please don’t lose hope–people these days are becoming more familiar with autism and other special needs disorders, and new programs are being developed all of the time. Ask the child’s caseworkers, teachers, and other professionals in their lives what options your child has to connect to others who either have this disorder or who are familiar with it, and who would be willing to be peer mentors to your child. Austin had his sisters as peer mentors, but I know of other children who have had peer mentors turn into friends. Austin was considered “severe,” but he still had friends, was able to work, learned independence, and seemed happy, so don’t ever give up hope!

Take care everyone 
_________________________________________________________________
**Austin and his sister Ashley pictured above

*Autismnetworksupport.com article “Five Tips for A Happy Future for Kids with Autism” link:
http://www.autismsupportnetwork.com/news/five-tips-happy-future-kids-autism-93899473

*Link to Minerva Siegel’s post on “Married, happy, autistic: My life as an adult with Autism”
http://offbeathome.com/adult-with-autism/

*Vista Adult Services link:
https://www.vistaadultservices.org/

The Austin-Mash

In the spirit of Halloween, I wanted to do something fun, so I changed the lyrics to Monster Mash to fit a night when Austin wouldn’t sleep–enjoy everyone!

 I was relaxing in the living room, late one night
When I heard a sound that gave me a fright
For my Austin from his bed, began to rise
And suddenly to my un-surprise

He did the mash, he did the Austin-Mash
He did the mash, down the stairs he crashed
He did the mash, his door went “SMASH”
He did the mash, he did the Austin-Mash

In my apartment on Lincoln Street
Austin was determined to NOT go to sleep
His booming voice in the middle of the night
Please forgive me, my neighbors, if he gave you a fright

He did the mash, he did the Austin-Mash
The Austin-Mash, it was NOT a smash
He did the mash, he was downstairs in a flash
He did the mash, He did the Austin-Mash

 Austin was having lots of fun
He thought the party had just begun
Taylor Swift was loudly singing her songs,
But I knew I’d be crying all night long

Austin was a-rockin’, he was digging the tunes
Justin Beiber on tv, backed by his dancing loons
I was slumped in my chair, barely able to stay awake
Austin humming to Katy Perry’s “I’m Wide Awake”

He did the mash, He did the Austin-Mash
The Austin-Mash, it was so NOT a smash
He did the mash, I need his sisters, Amber & Ash!
He did the mash, He did the Austin-Mash

Suddenly from his rocker, Austin’s voice did ring
Seems he was troubled by just one thing
His snack bowl was empty, he flung it across the room
His feet clomped down the stairs, with a resounding boom

He did the mash, he did the Austin-Mash
He did the mash, he was in the kitchen in a flash
He did the mash, he wanted corned beef and hash
He did the mash, he did the Austin-Mash

Now well-fed with his bowl of treats
Austin settled in for a looong night of beats
I had a coffee in my one hand, and tissues in the other
Having 3 hours of sleep–tomorrow work would be a horror

He did the mash, he did the Austin-Mash
The Austin-Mash, for him it was a TOTAL smash
He did the mash, please someone save me in a flash
He did the mash, all night long, the Austin-Mash
_________________________________________________________________

*Original “Monster Mash” lyrics link:
http://www.azlyrics.com/lyrics/bobbypickett/monstermash.html

A Day in the Life of A Special Needs Mom (In GIFs, Pics, and Memes!)

On a typical morning, before Austin moved into the Home, this was me after approximately 5 hours of  broken sleep:

Then the alarm went off:

Made Austin’s breakfast:

What I REALLY wanted to be doing:

Tried to stay awake:

 

Time to wake up Austin 🙂 :

Hi Mom!

Helped Austin get dressed for school, and supervised him eating his food (sometimes he’d want to stuff it all in his mouth at once):

Rushed to double check Austin’s backpack for school:

Greeted the nursing aide, kissed Austin goodbye, then off to work!:

Got to work and…

And then…

Uh, oh, have to rush to one of Austin’s meetings:

Traffic jam, of course:

Maybe if I run, I’ll be on time:

Whew! Made it!

Got out of the meeting, rushed home to get Austin off of the school van:

Never fails 😛 …

Made it home in time to help Austin get off of the van…he loved the van and never wanted to get out…I had to lure him out with crabby patties:

Austin and I would go upstairs to his room so he could watch tv and wait for Mike the TSS…

…where Austin would get stuck on Taylor Swift’s Blank Space:

Mike’s here! Off to the pool:

Hurried to make dinner…

…if dinner wasn’t ready ASAP, Austin be like:

Austin’s home! Supervised him eating dinner so he didn’t do this:

After dinner, hung out with Austin watching more:

While on his tablet played:

And on my phone he played this game:

9:30pm, time for a shower!

Then I helped Austin get in his pj’s, made him brush his teeth, and put on his calming essential oils…

It’s bedtime, I’m tired, but I don’t wanna:

After finally convincing him to lay down…’Night Austin!

I would tiptoe downstairs and be as quiet as I could be:

Then I’d PRAY REALLY REALLY HARD that Austin would go to sleep…

 I’d clean up, get a shower, and finally do a face plant into my bed:

Have a great weekend everyone!!!

More McDonald’s Adventures–Sometimes Harrowing, and Sometimes Hilarious, Life With Austin was Always an Adventure!

On this cold chilly day here in Pennsylvania, I was reminded of the times that Austin would get bored and want me to take him outside. Definitely the LAST thing that I wanted to do on a day like today. He would go to the closet, put on his sneakers, hand me his jacket (which he was capable of putting on by himself lol), and stand by the door, waiting for me take him somewhere.

Going out was the absolute last thing that I wanted to do, but knowing that the more I resisted, the more Austin’s behaviors would escalate, I grudgingly threw my shoes and jacket on, and out the door we went!

Fall and winter were always rough to get through–it was too cold for the playgrounds, and you guys know from my other posts that Austin was a hot mess in stores. He got bored walking around Fall and Winter Festivals, although I did try taking him to those for awhile, but after ten minutes, he was making tracks to the car. Sometimes Chocolate World would satisfy him, but there were times that he would be nixey there too (one time in particular he refused to get off of the ride, then he sat down on the exit steps and refused to get up!)…

And so our Saturday trips to McDonald’s were born! During the week, Austin’s Therapeutic Staff Support (TSS) person (and good friend), Mike, would assist Austin at the YMCA/VA pool, Chocolate World, and malls (Mike was brave), but on Saturdays, Austin and I were on our own–so off to McDonald’s we’d go!

I would go through the drive-thru first to get our food, since I wasn’t brave enough to wait with Austin in line. After getting our food, I would then look for a parking space that was close to the door, but surrounded by empty spaces–Austin loved to tap other people’s cars (especially antennas), so I tried not to park next to another car (at least on the side of our car that he was exiting). Austin would have his tablet, and I’d log onto the McDonald’s WiFi so he could play his Youtube videos, and at the same time, play games on my phone. So after linking arms with Austin–and juggling all of his devices, our drinks, and our bag of food–we made our way into McDonald’s.

On the way to the door, Austin would try to tap everything nearby–poles, signs, other cars…most of the time, I would be bear-hugging him to the door, but I learned that french fries could be a great motivator–if I took out a french fry and told him to “Walk nicely” he would shove his devices at me and walk with his hands in his pockets. Once we made it to the door, he’d get the french fry. Then I would take out another fry and say “Walk to the table” and he would lead the way to a table of his choosing. Now along the way, he would usually try to tap other tables, the garbage can, swing the hanging light fixtures, etc, but if he listened to my “No tapping” warning, I would give him the second french fry. If he didn’t listen and he tapped everything in sight, I would give him his burgers first, then he’d get his fries afterwards. Sometimes it worked and sometimes it didn’t, but I tried!  

Why was it so difficult for Austin to control his tapping? Autistic thirteen year old Naoki Higashida explains (please see below this post for article link):  “It’s like our brains keep sending out the same order, time and time again. Then, while we’re repeating the action, we get to feel really good and incredibly comforted.  I feel a deep envy of people who can know what their own minds are saying, and who have the power to act accordingly. My brain is always sending me off on little missions, whether or not I want to do them. And if I don’t obey, then I have to fight a feeling of horror. For people with autism, living itself is a battle.”

Once we conquered (or failed) the “no tapping” mission from the door to our table, we would settle in to eat. Austin would pick a table that had the window overlooking the traffic (he loved to watch the cars drive by), and the McDonald’s Sisters would totter over and say “hi,” giving Austin high-fives (his favorite way of greeting people). I’d chat with them for a few minutes, and then they’d go back to their table, me prompting Austin to wave goodbye to them. Austin would have a huge smile on his face when the sisters came over–you could tell that he really enjoyed the attention 🙂

We never knew what would happen at McDonald’s…one time an elderly man came over, said “Hey buddy!” to Austin, rubbed his head, and told me “God bless you, Mom.” We did not know this kind man from Adam, but he somehow felt compelled to greet us. As I’ve mention in other posts, a woman once stopped right by our table, and exclaimed “Is this Austin Reich??!” I said, “Yesss…???…” and she seemed so excited to see him, explaining that her son went to Vista and she recognized Austin from there. We chatted awhile before she walked away to join her daughter at their table. On another Saturday afternoon, we were sitting at our table and a nearby teenage girl kept looking at us. I smiled at her, she smiled back, and we went on eating our meals. When she finished hers, she stopped by our table on the way to the garbage can, and said, “Your son looks just like Justin Beiber!” Austin smiled and did his “yes” sign, making his sounds, and I laughed so hard I almost choked on a french fry! I managed to say, “Thanks!” and then SHE fluffed his hair (people liked his hair for some reason lol) and went merrily out the door.

Another time, I noticed a man staring at us a few tables away. I smiled briefly and turned back to my meal. A few seconds later, he turned up at my elbow, saying, “Excuse me, I don’t mean to be rude, but is your son autistic? My nephew has just been diagnosed with autism.” We then had a very lengthy conversation about when Austin was diagnosed, how I obtained services for him, and the Vista School.

A few times, we had people stop by our table and just say “God bless you” and continue on their way. This always surprised me–I mean, here Austin and I were, just sitting there minding our own business, not looking for or wanting attention, and people just felt compelled to stop at our table and chat with us. It always warmed my heart, and made me feel so thankful to God that we were treated with such kindness. I never minded talking to people about Austin–I knew that we drew attention because of his severe need to tap things (and my struggle to keep him from getting out of control with it), so of course we always unintentionally made quite the scene, but to have people approach us and express kind words, and who were just curious about autism, never failed to surprise me and touch my heart.

Of course there were those people who gave us weird looks, maybe seemed annoyed, and gave us the side-eye, but I always ignored them and just tuned them out completely. There are always going to be people who love to judge others, who feel superior, or who like to sit on their high-horses. In time, I learned to not let them bother me, and really, I do not remember encountering too many of those–my “he’s autistic” announcement usually nipped that right in the bud immediately.

Novelist David Mitchell writes this about having a child with autism (please see below this post for article link): “[This] analogy comes via a Jewish friend’s rabbi, and compares expectations of parenthood to planning a long sojourn in Italy. Prior to your holiday, you read up about Italy, speak with experts on Italy, plan your route, gen up on Italian and anticipate the pleasures of your time there. Having a life-redefining diagnosis – like autism, asperger’s, down’s, whatever – is like getting off the plane and finding yourself not in balmy, romantic Rome but… Schipol Airport, in Holland. What the hell? My wife and I booked our holiday in Italy, like everyone else. But as time passes and the penny drops that hankering for Italy is stopping you from seeing Holland. Your attitude shifts. You begin to discover that Holland possesses its own singular beauty, its own life-enriching experiences.”

Before Austin was diagnosed, I might have planned my “trip” to “Italy”, but I realized that “Holland” was just as beautiful and enjoyable. I think back to all of those pleasant interactions with people at McDonald’s that would have surely never happened had Austin been “typical.” The shared amusement between Austin and I, and seeing the happiness on his face when people came over to interact with us, might have never happened had he not been autistic. It’s finding the “beauty in the ashes” (to quote Joyce Meyer) that made me realize that as old hopes and dreams die, they can be replaced with new hopes and new dreams that, although different, can also bring a joy beyond description. I had alot of joy with Austin, and driving past McDonald’s…remembering our times there together..makes me smile.

Take care everyone and Happy Thursday!

_________________________________________________________________

*Link to articles from David Mitchell and Naoki Higashida:

• https://www.theguardian.com/society/2013/jun/29/david-mitchell-my-sons-autism

How a Sense of Purpose Helps to Manage Autistic Behaviors and Boost Self Esteem

As I have stated many times before, Austin’s behaviors could be a challenge, but I learned that I could manage them better when I gave him a purpose, and that purpose was performing a task that he was good at. educationandbehavior.com says: “Keeping a child focused with an activity they do well with is a great way to encourage calm behavior” (See below this article for link). For example, when going into stores, if I had Austin pushing a cart or holding a basket, his hands were involved in doing something, which gave him less opportunity to tap things and knock items down. Ditto for having him place items into the cart/basket.  If I was searching for an item on the shelves, I would hand Austin my phone so that his hands would be busy playing his memory match games.

This worked okay for me–there was a loooong period of time when I didn’t dare to go into stores with Austin, but when I absolutely had to, and when he learned from Vista how to behave (mostly) in stores, this is what I would do to keep his hands occupied. In the Vista High School, his teachers found an even better way to keep his behavior in check–MUSIC!

Austin LOVED music–absolutely loved it! Selena Gomez, Taylor Swift, Arianna Grande, even Justin Beiber (who he weirdly resembled during his middle school years)! Recently he’d gone through a “Britney Spears” phase, which I wasn’t totally thrilled about, but, hey, he WAS 19 after all! He was always rocking in his rocker, and I had downloaded a playlist of YouTube music videos for him that he would watch over and over again, but as he became used to using his tablet (and my phone), he would click on the internet icon by himself, click on “Youtube”, and then he started choosing his own music (versus me choosing it for him). At times, his tv (it was a SmartTV), tablet AND my phone would ALL be on Youtube, all playing different music videos at once!

Austin’s high school teachers tapped into his love for music and they got him wireless headphones. They would have these headphones set to play his favorite music, and they used this on outings to keep his behavior under control. They’d have the music playing through the headphones, and when he started behaving undesirably, they would turn off the music immediately. After he stopped the behavior, his music would immediately be turned back on. Austin quickly learned to behave appropriately with this method, and I used it at home and on outings with him as well.

Having a purpose (and his music) not only lessened Austin’s behaviors, but I believe it also made him feel better about himself. At Vista, they would have Austin help to make Halloween and Christmas treat bags for the younger children, and Austin became quite good at it (in the featured picture above, Austin is making Christmas treat bags for the elementary and middle school students)!

Job trials also gave Austin a sense of purpose and a good sense of self-worth. He’d be so happy and pleased with himself when he was able to perform tasks well–he did an excellent job during his work trials at a library, Pepsi, Starbucks, and the YMCA.  When I’d mention to Austin how well he did at these jobs and that I was proud of him, he’d get
the biggest smile on his face! His undesirable behaviors were also decreased during these trials–I was absolutely SHOCKED when his teacher told me how quiet he was at the LIBRARY, of all places (Austin was constantly making sounds), when an employee was taking an unusually long time with explaining his task (he was instructed to tear the card pockets off of books).

I often worried about what Austin would do after he graduated from Vista, and these job trials opened my eyes to a whole new world of opportunities for Austin that I hadn’t thought of as even remotely possible. And his amazing success, that was beyond my wildest dreams for him, gave me new hope. I believe that had Austin lived to be a ripe old age, he would have found a wonderful job that would have been a perfect fit for him, and would have given him happiness and another sense of purpose to his life.

Autism Speaks has this to say about employment for autistic individuals (see below for article link): “Employment is an important part of adult life. For many of us, our job defines a big piece of who we are.  As outlined in IDEA, one of the most important objectives of transition planning is to develop and implement a plan to secure employment.  In order to do this, you and your young adult may want to consider activities that utilize his or her strengths as well as activities that he or she likes to do. Information gathering, assessments, volunteer opportunities, internships, job sampling, and job matching all play important roles in preparing a young adult for employment [options]. These options may include sheltered employment, supported employment, or competitive employment.”

Giving Austin a sense of purpose definitely helped to manage his behaviors, and made him feel good about himself. By using his music/headphones and using alot of praise, as well as giving him tasks that he could handle, Austin and I had very successful outings. For more ideas on employment for autistic individuals, increasing self-esteem, and managing behaviors, please click on the links below this article.

Take care everyone!  ________________________________________________________________

*Autism Speaks article link on “Employment and Other Options”

• https://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit/employment-and-other-options

*Link to Vista Adult Services for autistic individuals including employment and autism:

• https://www.vistaadultservices.org/

*Raisingchildren.net.au article link on “Building Confidence in Your Child with Autism Spectrum Disorder

• http://raisingchildren.net.au/articles/autism_spectrum_disorder_building_confidence.html

*educationandbehavior.com article link “15 Behavior Strategies for Children on the Autism Spectrum”

• http://www.educationandbehavior.com/behavior-strategies-for-children-with-autism/