Thanks or Giving

Festivities with family may either bring you joy or stress, either way we work through it don’t we? Of course we do because it’s the routine whereby we either merry or make a mess of it. I’ve always enjoyed my childhood memories of going to both sets of grandparents houses in the same day for Thanksgiving meals and visiting with family. There were no outsiders we called ” family friends”. If you came to our function or meal you were indeed an honorary member and that’s just how it was. I liked that!

Fast forward to losing the staple elders in the family keeping everyone together and it has become sort of droll in the last several years for me. My plan was to have my own kids relishing fun moments of playing outside with cousins and having so much fun they didn’t want to leave, but sadly I don’t have that to give them now.

For me growing up family functions were filled with laughter, games outside, more food than you could eat and everyone was happy. No arguments mattered and we took naps and spent the entire day wherever we went and it was great. But now my kids have only one place to visit with the last elder we have. I cook the turkey and dressing and whatever else I can think of. Our family members have gotten older so the trip seems short and people coming in and out in shifts feels more like a department store than anything else. Mostly we hear about local gossip which I walk away from and we hear about ailments and not much thanks. It has become even more droll for me as I lost my best friend and sister only 6 months ago. I’m struggling a little to function. I miss my mother-in-law who sat st the table with me and peeled vegetables. In fact I almost dread it this year.

Life changes for everyone and we must remember if we are going to create new memories with friends and family or not, we have to do it and keep the good memories good and not do very sad. The things i’m grateful for I miss them most of all and would love to go back to that carefree childhood were there was no worries or cares.

We got a new diversion an adopted puppy from a non kill shelter so Gaston helps. I guess I had hoped to much that family and cousins and relatives in general would somehow stick together like the elders had us doing, but that was not so. People change and family morphs and evolves more differently than what I new or enjoyed or so it seems. So I learned to accept it and try to figure out someway for my 3 boys to have their own happy memories.

So, we started cleaning out the house and giving clothes away to shelters and I attempt to make a plan for the week ahead. I make calls that are only returned in short minutes because time is our ruler and we just accept it and move through the motions don’t we?

My middle child Colby posed a question to me which got me thinking. “Are we supposed to Give Thanks or Giving and how do we do both?” I thought I had explained this well but we had a lesson on it and I think I learned more than they did. You have to be happy with you. You have to be thankful for what you had, will have and what you plan to do to give back to others. If you are willing to go the extra mile because you truly do care then you will if you don’t then you will continue to do the same things you’ve always done. Thanksgiving is about enjoying who you have, honoring those who you miss, giving to those who have not and making it a day of festivities and gratefulness that you have the means to do it with whom you choose to do it with.

So, what will you be doing? Will you separate it into thanks or giving or will you combine them? I’m just trying to figure out a way for my boys to have a solid family and friends like I used to have and put self aside. Self has been too much in the way for a lot of us. Whatever you do, wherever you go, whomever you do it with I hope it’s a happy festive time with happy memories. I’m starting over with new things in store for the boys so they understand what it means to be thanks and giving.

Special Needs Mom of 3

#autism #tourettes #geneticdisorders

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Kind Words

Being a mom of normal kids is hard enough, but having 3 special needs kids dealing with autism, Tourette’s and a funky genetic disorder is well, harder. There are so many families dealing with special needs kids that would like a few kind words and positive uplifting words. What do I mean? How about the typical ( family member meaning no harm) says well if he/she was my child I would do (insert whatever)… No you wouldn’t because you’re not in our position to comment because you’re not there to know how to deal with it. How about the friendly church lady ( means no offense) says oh how pitiful did you know they were going to be like that and was it something you did to cause it? No it was genetics not like I could control that. As if I don’t feel guilty enough you took that to a whole new level inside my head…

It’s nice ignoring rude people in stores and stares and sometimes I get so mad I lash out verbally trying to make them aware of how idiotic they are and I hear what they are saying. Mostly they walk away but every once in awhile I get to speak my mind and shame whomever it is.

Where has the kindness gone? Where has the empathy for other humans gone? Are we that selfish and rude that we have forgotten how to speak kind words to each other? Are we so mislead by drivel and nonsense on tv, social media that we are only focused on what’s in our face? How about kind words like: Hope you have a good day or Thank you or Your kids are nice or i’m praying for you.

People say things without thinking about what it could mean to the other person. Unless you have special needs kids or care take or work with them every day it’s better to say something kind and let it be. If we focused on something other than ourselves and bring a little kindness to someone else who needs it maybe kind words would be easier to speak?

Kind words , not telling a mom dealing with something she’s trying so hard to not lose all hope in herself or child by telling her how awesome you think you could do it better. Just be kind say kind things and pray if you ever were in our situation you would think before you speak.

Gus the Boxer

So after 10 years of a happy boxer life with his family our Gus Gus passed away from cancer. I will give you a little background about his furry little life and how he chose us.

We had lost our other pet Tater shortly after my husbands mother passed away when the older boys were little and I had just had our last little boy. We were upset about it of course but, agreed after enough time had passed we would find another dog to spoil and the boys would have another playmate. The week was December 9th 2007 when I got a phone call from my cousin Liane who had an infant boxer that needed to be adopted. Actually she said ” happy birthday come and pick up your present”! We had never had a boxer before and he was 7 months old. Chris agreed and off we went to pick up our new baby. He had a bit of a rough streak before not liking cats, others animals and had chewed the screen door where he was living at to get inside and watch tv. I didn’t care.

We got him home to a happy bunch of boys and immediately he loved all of us even our new baby became his baby too. The boys didn’t like his name so they chose the next best name for him Gus Gus! He was goofy and crazy at times and the boys thought he resembled the mouse on Cinderella so hence the name fit him well.

Gus tested our nerves some days being hard headed and he ate a few things and doors and Sheetrock but, he was still our baby. Gus knew the boys were dealing with special needs issues and he knew just how to help me calm them down during meltdowns or other issues. Gus was more empathetic than some humans I knew. Out of all the dogs we had he was by far the greatest of them all. The boys could dress him up in costumes and hats and he gladly obliged their every whim playing along or just laying on his blanket while they played around him or rolling on top of him.

Gus had no cares or worries in the world. We spoiled him greatly. In fact, when we would go on short trips or vacation he had a baby sitter or went to doggie day care where he received extra pet perks. He loved those massages and extra love times. He was worth every penny spent on him we didn’t have to spend. He made our family happy. He went through so much with us and even having his white fur colored with a blue sharpie marker by his little boy, he loved it anyway.

The worst part was having to deal with him getting older and changing how we played with him. Anytime he had a little pain or not we doted on him and Gus played us like a violin. Finding out he had metastatic cancer was devastating I mean after we just lost my sister to cancer I could bear the thought. His condition was worsening so we took him to the emergency vets but God had other plans and he passed away peacefully in his sleep with his ” mom and dad” with him. The boys couldn’t bear not having him home so he was cremated and will have a nice box and his paw print for us to keep. As hard as it is to lose Gus id like to think he’s with my sister Melanie playing and eating as many treats as he wants now. Missing our slobbering happy Gus Gus forever…

Special heart for Special Needs

Do I homeschool? Yes I do. It was way worth it for my kids to do that rather than be in the constant stress and no one learning anything the other way. I’m not knocking public school at all it just was not the right choice for my family and we did the right thing.
We had tried and failed with pre planned EIP meetings before we could get there and discuss what the boys truly needed to happen but we did the best thing for them and just went our separate happy ways. I had pretty much fought the system all I was going to so as a family and the urging of our doctors we took them out, went home and started on our journey learning and struggling together.  In the beginning it was most difficult because not one of them could read very well at all and with only one child finally getting a few limited services I had to really focus and bog down finding out what worked for my 3 boys. There were no math skills, no comprehension skills, very limited speech or occupational therapy for them that worked at all and no improvements. I did what any mother with 3 boys like mine would do, I cut my hours at work went part time and sometimes not at all to make sure they were getting what they needed in the subjects that they needed.

Now you may say well homeschool doesn’t work for me and give me all the reasons why and that is perfectly OK too, it’s not for everyone and as a family you have to do whatever it is that will work successfully. My oldest was born with left side brain damage and lack of oxygen, he was an emergency c-section and later we found out after many battery of tests that he was Autistic with some type of nervous sensory and genetic disorder they are yet to find out about. Now my Austin wasn’t supposed to talk, feed himself, dress himself or be able to do anything in daily life skills according to the experts. Well, after working with him for the last 17 years of his life he can speak, dress himself, feed himself and perform daily tasks. Granted he has very severe short term memory loss issues and it may take him a long time to complete some tasks but he does them. He is a testimony to those at church who are amazed at his level of almost savant knowledge in bible history and United States History. He reads very well but not out loud due some communication issues we still are dealing with.  As a nurse myself I had some good friends who were speech therapists and occupational therapists that would come visit us on their off time to give me pointers and help me work with him because we couldn’t afford to pay for it out of pocket. Those folks were wonderful jewels to us and I am eternally grateful.

Colby is very intelligent and so far everything he tackles he does very well with little difficulty in his subjects. That kid can draw and loves art and computers. He’s super hyper and over talkative but thats just who he is as a kid. He’s my big helper for the other two and I’m so glad to have him on days when Austin or JonAvery had bad days and things go all wrong for everyone. He’s always been my smiley boy.

JonAvery is very Autistic with complication in speech and language cognition. Reading for us is still a struggle and he’s 10 but we battle through each day tears and all. He wants to read so bad so we have to find creative unusual ways to help him due to his dyslexia. He’s very timid and having to battle his Tourette’s ticks, Lord bless him he gets so tired some days. Working on daily living skills is a huge challenge for him but he’s learning. We just learned to tie both shoes and that in itself is something to be proud of. He is my actor, singer and general ham. Homeschooling him in itself has been a challenge but he’s finally understanding what we need him to do so he’s working harder at it.

I teach and work with special needs children and adults at my music studio http://www.Music-and-MoreStudio.com very similarly to how I work with my own kids. Music is something no matter if you have language or not pretty much everyone of all abilities or what have you understands and loves. I have worked with so many children who benefit from my music sessions that is just makes my heart smile. They are better with speaking, math, reading and learning letters and colors working in a musical stress free environment. I don’t what God’s plan was to give me children with special needs and complications but he must have known his plan in doing that. Homeschooling keeps me humble and patient when I’m not really a person that has patience at all. Music sessions keeps me grounded and understanding of other families issues who have it so much worse than others will ever know. Choosing to stay and help my children was something that I knew I had to do even if it meant proving those who didn’t believe in me or them wrong and I continue to do that.

Everyone has a gift and we can choose to give that to our children and others or we can be selfish and keep it for ourselves. For me it’s better that I can bless those and help those learning and struggling together knowing they have someone who understands and appreciates them. No matter what labels medicine or the society place on you, no matter if you are able or differently abled, no matter if you appear normal or strange you are a HUMAN. You are God’s own creation so hold your head up through the tears, struggles and horrible remarks because I have and it’s made me a better mother, friend and music instructor.

Disney Vacation Day 2

Ahhh Magic Kingdom the most magical place on earth. We happened to go to our very first dining experience at the Crystal Palace. It was fantabulisicious! Yeah so that’s not a word but it is now. The character dining experience was so sweetly done and the kids enjoyed it tremendously. The food is self service buffet style but really tastes very well.

We had one of the nicest personable servers I’ve had there. Karen from Charleston, Illinois was so knowledgeable about the dining, the park itself and shared some really great information for us new to dining at Disney. In fact, she’s got me thinking about a cruise with the hubs in the future for an anniversary trip.

We had our not so scary party tickets and got in line to get our bracelets and candy bags for the evenings special event. Mickeys Not So Scary Halloween is by far our favorite event. The boys enjoy trick-or-treating and looking at all the wonderful costumes worn by families like us just having fun. The park was a bit crowded this time with wait times being just as long as the day times and I can’t understand that because all the other times we had gone it was much more fun when you felt like you had the park to yourself. Maybe the hurricane caused the people to reschedule the same time as we did i’m not sure but we made the best of it.

I finally got my set of Mickey light up happily ever after ears to wear at night. If you get an opportunity to go to the Halloween event it’s worth the time and money with special magic hours and decorations to make you stop and stare for awhile. Magic Kingdom is our favorite place that’s why we go twice in one week and other parks once. I hope they continue to expand it and add more rides and interactive ideas for many years to come. Walt Disney sure knew what he was doing to allow creative people and dream put their dreams into a place where people like us can take a break from reality and be kids again.

For those like me with special needs children get the disability pass as I’ve just learned about it myself. Disney has great information on how to use it so check them out.

Vacation Day 1

So today we headed out to our first park Animal Kingdom at Disney World. Mornings are not always easy getting 3 boys cleaned up, backpacks ready and frozen water and Gatorade but we managed to do it. The line to get in and get bags checked was long and this was the first time I made the 2 oldest boys carry and keep up with back packs. The confusion alone looking at what we do and attempting to mimic us looks overwhelming to both of them and frustrating. We manage to make it through only to wait again for the card reader and finger print orb. I demonstrate to the boys ” card in your left hand then use the index finger and it turns green”. The little one has yet to get this down pat.

I tend to annoy the spousal unit by repeating myself to them until they finally get what i’m saying ( mom has superpowers) but I gotta do what a moms gotta do. Overwhelming looks on their faces but the smiles show up. Each time we waited in lines for a ride I would ask them if they were having fun yet. Of course they said yes but when you have special needs kids dealing with autism, Tourette’s and other issues it’s hard to tell. Mostly they like the rides, shows and food but hey, who doesn’t.

Our backpacks were a big help especially since the 2 oldest were able to keep up with theirs and house some important stuff like:

Hand sanitizer, frozen water, frozen Gatorade, gallon ziplock bag with extra clothes, ziplock bag with autograph book and pen, medicine, cooling towel and spending money from Nana.

It takes about an hour or two before I notice them getting acclimated to their busy surroundings ( eyes wide as saucers) but we manage to walk at a constant pace and dodge the people who clog up the main walkways instead of moving to the side. I guess once you enter the parks for normal folks it’s just as overwhelming so the crowds ramble about appearing confused as to what to do or where to stand next. The boys get frustrated easily by crowded places and they make mention of rude children running amuck instead of being polite and walking nicely with their parents but since it’s Disney they tend to overlook it once a year to have their own kind of fun.

The scenery is beautiful and I feel like we miss so much dodging people and trying to reassure the boys we are not going to leave them anywhere. In fact the boys see things and point out things every year we go that I missed in my own experience. I have to admit Disney really goes above and beyond to make it magical, beautiful and inspiring for us. I wonder if Disney ever considered what it’s like from the perspective of special needs kids like mine? I bet they would find it very informative and interesting to know what’s it’s like from the eyes of a different child. I’m amazed by what they think and how they react through some experiences.

They hope to become imagineers one day and the imaginative ideas they shared just walking through the park was really amazing to hear how this or that would be if they were the ones dreaming it up. No wonder it’s the only place they ever ask to go because from the eyes of a special needs child it’s a completely different world to them than even I understand. Facial expressions mean nothing on the outside it’s the special Disney magic that sparks them from the inside. There is so much we can learn from special needs kids I learn from mine every day it’s what I do attempting to teach them but they end up teaching me.

Disney totally rocks now if I can just get them to give us a behind the scenes tour…. hmmmm oh well one can dream right? Animal Kingdom you were a fabulous visit. We enjoyed the Restaurant-o-saurus and the cooling quick rain shower during our safari ride.

Until next time in the words of my little JonAvery ” mom that baby giraffe really likes me”.

Disney or Bust

So Hurricane Irma caused us to reschedule our family vacation until the second week of October. Disney is something, actually the only family vacation we take with the boys for the past 5 years. So having special needs kids who ask for Disney, we somehow make it work.

Planning, paying, packing and praying become the necessary order until we head out for Florida. It takes roughly a year to get things in order and prepping the boys and updating them about what will go on. I think that their dad and I are more excited sometimes than they are.

Disney honored all our discounts and rebooked our week for us. We can’t afford to stay on site but we were able to find a suitable week at our old faithful resort Bahama Bay. We are used to the layout and it’s very comfy and roomy in the abacos villas. I pack like we’re moving but there is a method to my madness and they understand it.

It was hot, crowded but we don’t care about that at all plus when you visit the most magical place on earth our kinda have to expect it and plan. It was a fabulous break and we are always so sad to take the last ferry ride back to our van.

I take tons of pictures and place their trinkets and autograph books in their totes to treasure as mementos when they get older.

Some complain about the expense of Disney but when you have spent a lifetime building the brand nothing they do is ever disappointing to us. Disney does their best to accommodate so many cultures, people and with special needs kids like mine who look forward to going to a place where no one treats them like strange creatures it really is for them the happiest place on earth.

They want to work for Disney one day and I believe in them that one day they can. Imagine that a proud set of parents to one day watch them reach those goals of being imagineers. Disney creates dreams and allows all of us to dream and make it magical.

3 Good Mornings and a Dog.

Alarm clocks don’t work at my house for the kids and getting up early is something they dread anyway I have unique approaches.

1. I get our boxer dog Gus all excited and open the door to Colby’s room and he does the rest. (Slobbery goodness and digs him out of the covers. )

2. Room 2 is tricky and requires more creativeness than Gus can do since they share a room with bunk beds. Gus gets the bottom kid and I get the top kid. (Misting fan and a whistle).

Everyday is different because sometimes I get to be even more creative by playing a pizza pan with a spoon and singing loudly off key until they pop out of bed all happy to take over the pan drum and sing their own song. We have fun unless you are 17 and don’t like mornings (Austin) but for the most part we have a good time.

On to showers (oh my goodness a real chore) and breakfast. Sometimes it consists of eggs, bacon, sausage and pancakes but sometimes it’s just cereal with Gus getting all the left overs either way. Showers and maintaining ones complete hygiene has been a struggle to get the boys to remember to use soap, brush your teeth or my all time favorite you have soap on the back of your hair not the front let me help.

Dressing is easier now that everyone can tie their shoes use zippers and attempt buttons. I don’t think I have to worry about anyone being a fashion trend starter because no one matches colors or articles of clothing. I like to think one day we can get this sorted out to but it’s a work in progress. I have to watch them because if they get attached to one pair of shorts or a shirt they tend to hide it away then try to wear them over and over without me washing them and that bugs me.

Finally I hear ” Morning Mom” one by one followed by some rambling information I have been given because Colby just starts talking about random things he’s thinking about. JonAvery hangs on my side until I pry him off and get his food to the table. We have lovingly dubbed Austin the phantom because he can be so quiet and disappear in his room so fast away from everyone, we have to seek i’m out. Mornings last somedays until noon but we get through it.

Coffee water in the microwave beeping for the last 10 minutes reminding me I need to heat it up again and eventually I get to sip on it before putting it down and forgetting it all over again. Ah the life of a special needs mom is not glamorous but to me it’s worth it.

Special Needs Moms ROCK!

So being a mom of 3 boys, dealing with autism, language and communication issues, genetic disorder, pica, behavior issues and Tourette’s, I’d say my plate is pretty full at home. I’m a songwriter by gift and a musician who happens to have a music recording studio…. Oh and did I mention I homeschool, get invited to speak  and teach other special needs kids through my music sessions? No? Well I do. I’ve been working with special needs kids through my stress free music program for the last 17 years. It works and the kids are doing well with it.

So you want to know about my boys eh? Their ages are 17, 14 and 10. If you include our boxer dog Gus he’s 9 1/2 and the hubby…. well I’m completely out numbered and doused in testosterone.  The questions I get asked most is: Can they function ok?  Well, um yeah they can. You see every situation is different all kids diagnosed on the autism spectrum are not the same so you can’t compare my 3 with a random kid you met that one time who was having great difficulty being in a public place. Plus it’s not nice to judge but ok to ask if you don’t know because I would much rather you ask me honestly than assume I have 3 handicapped kids who can’t do anything because you saw one and assumed that’s how they all are. I like helping educate people especially about our situation and parenting and what worked for us and what didn’t if it helps another family.

As a mom I knew something was wrong from the beginning. I hoped and dreamed I would have these normal children and one day they would become doctors or astronaut’s or cure cancer…. but wait…. guess what?  They still can just at their pace. I worked with my kids through music because it’s who I am and what I do.  We all have gifts we can shine on our kids to help them be successful in life.

When I heard my oldest Austin singing in key to Thomas the Tank engine I started working on him myself and he was just 2 years old. Austin was pretty much mute with echolalia language issues until he was 7 years old so singing was easy for him to do. I went through all the procedures and tests with him being my first one the most challenged with difficulties to get him services and help and when I found out I could help him better than what he was getting, I did just that….  I helped my child and you know what else?  He taught me more than I ever could imagine. All my children teach me something every day rather I want to learn from them or not they do. I have spent my entire mom-hood (is that even a thing? It should be) on them 100%. I decided to give up and not pursue a full time nursing or music or business career because they needed ME and to be completely honest- I needed them too. I worked hard to mold them into good little humans, sweet, caring and kind with manners and they molded me along the way.

I have no magic wand to wave and every situation is different for every family and every child. All 3 of my children are so different and complex in their own ways I had to learn to adapt to them and not them to me. I became a chameleon for them. I learned to change with them. Music was my own therapy and my connection to my own feelings so I figured out a way to make it work. They love to see me on stage  with the band and they now can help me during shows backstage and whatever they want to do. They are happy, sweet children sing along with the audience and I am proud of them.

I custom each music session I do with each special needs child or group to help them express themselves as stress free as I can and those kids LOVE IT. The parents see positive changes and that’s what it’s all about. There really is no magic program, no one person can make a child with special needs appear “normal” in society. You have to work at it and figure out who they are because they are only as good as you allow them to be.  At the end of the day and the beginning they are still CHILDREN. I stopped dreaming of what I wanted them to be and started helping them be who they want to be and so far through all the tears, struggles and uncertainty, I think we’re doing a good job. We may not have a lot of stuff and that’s ok we’ve dealt with a lot worse and God never has let us down through 17 years of dealing with all the issues.

Ask me a question and I will be happy to help answer it as honestly as I can. If you want to book me to speak at your event contact my management at http://www.Music-and-MoreStudio.com   Thank you for reading my blog.