A Quiet birthday and Paying it Forward…

  
      Today is a day we all look forward to in every type of background…a happy birthday. My son, Keegan, turned 4 years young and it started just like any other day. My son has autism, and is non- verbal. I never really thought about him and his speech delay, I have always said, “When he is ready, he will find his voice.” I still believe that, of course, but this morning I started my day feeling a bit down.
        Keegan followed me into the living room dragging both his favorite blankies behind him. Sat right in my lap and snuggled in to get warm. I gave him a kiss like every morning, but this time sang, “Happy birthday to you…” he just sat there and stayed calm and quiet. Just like every day. I have worked with children with autism for 15 years now, and I’m well aware that some kids do not speak until 5, 7, even 10 years old. I am also very aware that some beautiful autism children do not ever find their voice. And I really am ok with the fact that he isn’t ready to find his. I just got a little sad this morning. I haven’t ever heard, “I love you,” or, “I need you Mama.” of course I know he loves me because of how he gives me lots of kisses and giggles all day every day. I know he needs me, because when he drags his blankies and snuggles into me and lays his head on my shoulder, I know he wouldn’t want to be anywhere else in the world. But having a birthday to show growth and becoming a little adult human, you sometimes take for granted that people just expect their kids to tell them about their day, some parents even get tired of hearing their children rambling on and on. But not me. I know what it’s like to really want to hear my beautiful boy tell me a secret, or to tell me he is upset, or scared, or hurt…but instead we wait silently.

        Positive vibes came out of my silent and little sad day, because of the fact that I know Keegan will find his voice. And if not his voice, he will find a way to communicate. There is no question in my mind. So instead of getting upset about what I am missing as a Autism Mom, I wanted to think positive and Pay It Forward. So I switched my entire day around by buying a few co workers coffee that have somehow helped me throughout my journey as “Stimmy Mama.” because something simple like a kind word, a laugh, or even the attempt at understanding has made an impact on me, and those people go through life not expecting anything in return. So I chose to use my moment of weakness to give to people that help make my days bright. Keegan will be proud when I tell him today, and he WILL communicate in his own special way to tell me. 

  

 

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Only partially happy holidays

  
Hello Happy Stimmy People! 

It has been quite a while since my last post. That’s because new behaviors and lack of sleep has kept me pretty busy, or at least really effing irritable. It happens right? 

This time of year gets difficult for my family, because people invite us to holiday gatherings. Quite frankly I appreciate the invites when I still get them, it’s showing me people still care about us. But the truth is, the last thing I want to be apart of is my sons meltdown situation in the center of someone’s special event. SuperKeegan has changed a bit, meaning he is now obsessive which makes a difficult life more strenuous. Especially since he is non verbal, so when gets pissed he can’t even tell me what the deal is. He just to work through it, kicking and screaming, until he is exhausted and needs a hug. And although people try to understand, it’s impossible for a person without a special needs child to “get it.” So we go through life being apart of the celebration when we can, praying the time we do participate we aren’t asked to gather our child and what’s left of our dignity and slink out the door hoping no one will notice us.

So you want to help you family during the holidays? Here’s a few things that I always find helpful in our holiday insanity…

1. Allowed to invite, be ok when the answer is NO- even though you really miss your sister, or cousin, whoever it is, keep in mind deep down they want to be there. So just be kind and caring when they respectfully decline. You have stated that you adore the special needs family member a hundred times but keep in mind the little meltdowns you may have witnessed are extremely mild, no one but immediate family ever witnessed an “end all” level meltdown and they may want to save your party by appreciating your thought from a distance.

2. If they ask for a detailed guest list, don’t judge and give the run down- parents of special needs children often worry not about the people attending, but the AMOUNT of people. Keegan loves going to Nana’s house, but if it’s stuffed with 30 people and he has a meltdown, it may get dangerous. So they aren’t being jerks asking who will be there, just causious.

3. If they plan on coming, prepare for the worst- Yay they are coming! Should I do anything? HELL YES. Even though it isn’t necessary to announce the “Autism family” is on the way, do prepare in your mind a nice little something for just in case scenarios. This way if a meltdown occurs and they need to restrain their very upset child, just notice if anyone is staring, or totally disgusted. This would be a good time to sashay over calmly to said person and say something like, ” I know this may be difficult for you but their child has autism and he/ she is just having a difficult time right now. Would you like to come into the kitchen? I will get you a drink.” The person needing to restrain their own child at a party will forever be grateful for this calm step in.

4. Don’t ever stop asking- Even though typically if you ask a friend and they ALWAYS say no, eventually you stop asking. But if that friend has a special needs child please do me the favor of never giving up. There is a very good chance they say no for the rest of their child’s adult life, because being a special needs parent doesn’t stop at 18. The friend will appreciate being asked, because you are still considering them family and that means a lot to us.

5. Lastly tell us when and why we aren’t invited- Even though it sounds harsh, I always appreciate a friend telling me that we aren’t invited. There are always times when people don’t want to deal with possible situations, so if you nicely tell us there is something special we may be bummed but we will still appreciate the honesty.

This post came after my son and I missed my brother in laws birthday on thanksgiving eve because every time we needed to get in the car, SuperKeegan had a severe screaming fit and would end up with us in full restraint where ever we were. Sadly after the third restraint I gave up. But the next morning when I texted “happy thanksgiving, sorry I missed you again,” the response I received was, “no worries I understand and happy thanksgiving.”

We have lots to be grateful for ❤️

New home, new school, new life…

Helloooooo everybody!
Long time, no communicate. Sorry bout that. But things were amazing rebuilding life with the superhumans dad, then there are of course hiccups along the way. That was 8 months ago…
      Since then life has changed drastically. My daughter goes to a different elementary school that she is doing much better in, and Keegan is still attending the most amazing autism school in the area, Center for Spectrum Services. We live only a few minutes from my job which is a blessing, and now I get respite care and actually am allowed to spend some time on my own, or on a “date night” with my daughter. All things are looking up, and just as autism awareness month rolls around. I’m sad I have taken this much time before blogging again, but as autism parents know, sometimes life and other sh*t happens and all we can do is pray for a happy and safe landing.

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Drive In Fun!

Well dad and I took the humans to Hyde Park Drive in last night. The local fire dept., police and ambulance came for the opening of Planes 2: Fire & Rescue and Keener but was so excited! I brought him over to see the vehicles and he climbed right into the police car and the fire truck but then we had trouble walking away, because he wanted to stay. I believe there were a few other autism families there as well so Keegan was probably understood by a few. But there is always that one ignorant person that has no idea at all. I am always pleasant in the beginning, and thankfully it didn’t have to go any farther than that, but it still annoys me when people have absolutely no idea. Really? Nowadays that shouldn’t be happening. But I politely explained  that my son has autism and that he might flail a bit when I try to get him out of the car. You would think the woman thought I said “he is severely contagious” she stared at me and it freaked me out more than it offended me. But the two cars next to us have amazing people in them. Just to be safe  I gave the disclaimer to both families about Keegan and his screechy behavior and both families were amazingly nice. It was great to be near great people that were unjudging. So Keegan didn’t watch the movies, but climbed around the van, and then snuggled into me to sleep. So all in all it was a great night, with only a few snags that we worked through as a family. It gets easier as time goes on …

(This post was written about a year ago)

School’s in!

Well needless to say my family has survived the move 3 blocks down the road! We were able to settle into our new home, and put a 6 ft high Stockdale fence around the back yard so we have been safely playing all summer! It has been great, and then school started for not only my daughter, going into 2nd grade, but my 2 year old Keegerbutt has started pre school as well. He goes to a special needs school, he takes the bus and everything. He LOVES it! Even on the weekend he wears his backpack around the house waiting for the bus, and it is heartwarming. I know it has been nerve wracking, getting my little guy ready for the bus ride to school for the first time, but it has been a blessing because Keegan has been so happy since he started school. I cannot wait to meet the wonderful staff that fills my Keegerbutt’s days with love, because he is always so happy because there are so many people that adore him, just like me

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Keegan and his Daddy, last days of summer

And the plot thickens

Well it finally happened. I have had the most spirit- breaking kind of day ever. My ambition stepped right on my neck and ground it into the dirt, and here I sit on my back porch crying like a blubbering fool. My son has been doing so well with early intervention and trying to non verbally communicate, that I have been trying too much with my poor over stimulated little man. Today was the straw that broke the autism moms’ back. My family decided to go blueberry picking at Greig farms in Red Hook and I thought to myself, ” well Keegerbutt loves blueberries! Nothing could be better for him!” We were there about 5 minutes, and the meltdown started and lasted about an hour. All he wanted to do was run, he is a runner. But when the no danger awareness kicks in and we are speeding towards a moving BMW, I act accordingly and snatch him up. That only made him flail and scream. He was safe, but he was PISSED. So I try to get him to the car and he is fighting me all the way, just like yesterday and the day before. Tried to get him in his car seat the beautiful little curly haired boy reared his ugly head. I had to sit in the heat, in the car and let him play at the steering wheel. There was nothing I could do. So what did I do? Cry. I sat and cried because he didn’t deserve to be drug to do something he didn’t want to do. He didn’t deserve being put on display in a fit of rage, because all he wanted to do was run. I can only imagine what ran through his head. I know there will be time when I miss him being little, but now it’s getting to a point where his safety could be in trouble because he is a climber, a runner, a ” I will totally jump into that pool and sink to the bottom if you let me” kind of guy. I’m so scared I’m sick. Sick all the time. Feeling like a failure because I don’t think the “time outs” are helping, but making him rebel. And then when he does get reprimanded, he cries. Cries and runs with his arms out, and wraps me in a big hug and squeezes me tight, like he never meant to scratch me to the point of bleeding. I know he has a long way to go, but I’m not sure I want to make everything a lesson anymore. I just want to play. I want to love. And want to snuggle that beautiful boy and have tickle fights. I’m kinda over the REAL fights. I already am losing my 7 yr old daughter because my son has 98% of my attention, I don’t want to lose my son too. I guess today isn’t a good message to be sending, but it does have a moral: all moms, even the Autism Mom Exraordinaire, has their breaking points. And when it happens, be there to hug and love them. Because even the moms that advocate everyday, like me, for their special needs kids to be invited and welcome everywhere, even with meltdowns, it’s still hard being the mom that very well could be the cause of the meltdown, warranted or not. So be gentle with us autism moms. I would never change my son, I love him just the way he is without a doubt, but it still is challenging sometimes, and it’s a long road ahead ♡

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Keegerbutt signing for “more” blueberries, the ones we BOUGHT at the exit 🙂