A thank you letter to a good samaritan

 I know Halloween is tomorrow, but I'm already stressing about Christmas. Already hoping and waiting for the call from Grace Connection. When it comes, I will forward this letter with our Christmas card.

    Dear Good Samaritan,

    Let me start by introducing who I am. My name is Courtney. My husband and I have an 8 year old son with autism and then some. Our little boy struggles with more labels then a clearance item.  I have many chronic illnesses. My husband has more metal in his body than bones. I know that the church doesn't tell you who we are. I know they don't tell you our story, for confidential reasons. I am reaching out to tell you our story, because I want you to know.

    Christmas is my favorite holiday. Full of magic and wonder. Love and family. Yet every year, I dread that count down.  Paying our bills is a stretch, so of course, buying presents for our son is something that isn't possible. I worry that he won't, get a "visit from Santa," because I worry about how we will put presents under the tree.

    My son doesn't worry. He believes in the magic of Christmas. Every year, the week before Thanksgiving, he starts in about the tree. You see, part of being autistic is their mind fixates on something and then hyper focuses on it. So it is around this time, that the Christmas fascination begins in full swing. (He starts his wish list before Halloween though.)

    We of course have a fake tree because we can't afford to buy a real one. But it's a little tree, and we love it for it's memories. So with tradition, the day before turkey day, my son and I get out the tree and assemble it. He then helps me string the lights, and we plug it in. Making him wait until the next morning to decorate is a chore, but he is getting better at knowing why we wait.

    Thanksgiving morning as we watch the Macy's Thanksgiving Day Parade, we as a family, decorate our tree. My son is all a chatter about Santa coming soon. He is ooing and ahhing over his special and most prized ornaments. He is in his glory.

    We too are happy. But we are still wondering. Still praying, that our family has been "adopted" by a good soul such as yourself. Of course, our son doesn't know this. As the days turn into weeks, and we run our errands, each time we see a Red Kettle Bell Ringer, my son gets all excited. He gathers all the change in the car, and crams it into his pockets. He drops a lot because his motor skills are off. He gets upset with himself. Never the less, we gather it up, and he proudly deposits it into the kettle. His face literally glows with pride. So does ours. We may not have a lot, but as the saying goes, together we have it all. We can't afford a lot, but we know, and have taught our son, about the good that the Salvation Army does for others. He never forgets.

    Then we get a call from the church. Our prayers have been answered. A kind soul, an anonymous good samaritan, has chosen our family to help with Christmas. What a true blessing. Each year when my husband picks up the boxes, there are presents for the ENTIRE family. Stockings stuffed to the gills with goodies and small toys. (perfect for little ones with sensory and motor skills needs.) And each year, we cry in secret. In sadness, because we can't make Christmas magical, but also in relief that someone else, someone who doesn't even know us, cares enough to make it happen.

    I thank you. I thank you for the relief. I thank you for caring. I thank you for making our holiday so special. For answering my son's wishes. I can't yet tell my son about you. He's 8 and he still believes. You know how I know? I know because he said to me the other day, "Momma! I know that Santa Claus is REAL!!!!! You know how I know?"

    I reply, "no buddy, how do you know?" and he looks at me, with his chubby little cheeks and his adorable little grin and replies, "I know 'cause we are poor, but I still get presents. So that means that Santa HAS to be real!!!!"

    I smiled and walked away. I had to "go to the bathroom." I closed the door. I turned on the faucet to drown out my noise, and I cried. I cried because my son knows we're poor. I cried because he still believes in the magic of Santa. I cried  because of you. Because of your love and kindness for our family.

    I'm not telling you our story for sympathy. I'm not sharing this for attention. I am reaching out because from one human to another, I want YOU to know, just how much, what you do means to us. I want you to know that we are thankful. We feel blessed by your kindness. You are keeping the spirit of Santa alive, for a little boy who truly deserves the world.


Thank you, from the bottom of our hearts,      

A Family in Need
















                                                                                                                           Liam last year with some sensory toys from Santa
                                                                                         

We don't get sick days

    When you are looking for a new job, one of the things all people consider is the amount of vacation days, personal days or sick days that are available to them. However, when I was expecting my son, no one gave me an outline of what to expect. What benefits were available. No one said vacations will never happen. Personal days, let alone personal time to take a pee would be a joke. And sick days? Mom didn't tell me I wouldn't get sick days!

    Add special needs to the mix. Even if you CAN sneak away for a minute to use the bathroom, the entire time you're sitting there, you're wondering what your precious angel is getting into. Rare occasions when your angel is sleeping and you try to take a quick shower, you wonder the entire time if angel will hear you, wake up and get into something. Or worse yet, try to unlock the door to go for a walk alone. How about vacation? IF you can afford this luxury, it's not really a vacation. Let's face it, a new place offers new worries. The unknown is uncool for our kiddos and for us. So now we must pack for every what if, because we need to be prepared.

 



We took a vacation this year. This was JUST Liam's stuff (and not counting all his foods or the all the beach stuff we packed for him)











     Now add chronic illness to this mix. (I have many, but let's just use fibromyalgia) There are days I can't move. Well okay, I can, but to do so causes excruciating pain. So I don't want to. I don't get a sick day. I can't look at my son and say, "Mama can't do that today buddy." Nope. No way. No how. I must persevere. I must ignore that I feel like I was hit by a truck. I must hide my pain face. (You know, those experts that say our kids aren't empathetic? Well, we all know how wrong they are.) My son can't see me in pain or he will break down. He will then perseverate on me and if I will be okay. So you brush away the tears. You bite back the pain, and you deal.

    As a matter of fact, I have been in a flare for 3 days now (if you could see my house, you would be appalled.) Anyway, I have been keeping him occupied with his lessons, board games, video games, etc. I play with him from my chair. He kept asking to carve one of his pumpkins. How could I refuse? So while all I wanted to do was lie in bed with a heating pad and take a nap, instead I gutted a pumpkin (He doesn't do pumpkin guts. Sensory yuck for him) and sat with him on the floor while he carved it.



So I guess what I'm getting is, when I was "preparing" for this gig as a parent, there were MANY things I didn't consider. Many things I wish I would have asked about. Special needs parenting wasn't even on my radar, so that blew me away. Regardless, I wouldn't trade this "job" for the world. I don't get many vacations. I don't get personal days. I don't get sick days. What I do get is unconditional love. I get to make a difference in the life of a child, and that's enough for me.

Why I hate functioning labels

    I do. I despise functioning labels. I don't care for labels at all, but as autism parents, we all know these labels get our kiddos the help that they need. The functioning labels are the worst though.

  They are designed to show where our children are on the spectrum, yet they are actually limiting our kids.

    Here's an example of why I hate functioning labels. Liam has been diagnosed by four doctors as being autistic. (as well as Bipolar and MANY other things. He has a full plate.) Two of which said he is high functioning. The other two said he was moderate.

    Why two different functioning labels? Let me tell you. Liam's IQ is 120.  He tests gifted in Math and in Vocabulary. YET, his reading comprehension is bad. He can read to me, but he can't tell me what it was he just read. He is considered learning disabled in that area. Even though he spoke early, his speech was so hard to decipher, it was considered as a speech delay.

    So it would seem that based on his IQ and some of his test scores, he is "high functioning." But, based on his "disabilities" and behaviors, he is considered moderate.

    Liam has also learned to "pass." For those of you not familiar with the term, "passing," it is when an autistic is able to pass as "normal." There are some days where Liam can play with his peers or be in a public setting, and no one would know he is on the spectrum. However before long, "passing" becomes too much work and a meltdown ensues. There are also days where he doesn't even try to pass. It seems that at 8, he has realized that around the people that accept him most, there's no need to pass. So around new people or in public is when he attempts passing.


    So you see, Liam is literally, all over that spectrum. He doesn't fall into one convenient slot. The more parents I speak to on my page, the more I have learned that Liam isn't alone. So why do doctors and therapists insist on using these functioning labels? Even though the DSM V caused an uproar by removing "Aspergers" as a diagnosis, knowing what I know now, I have to agree. I am glad it's gone.

    You know what else I don't like? I don't like when I am speaking with other autism parents and they act like Aspergers makes their child better than mine. Does it matter? It's all technically the Autism Spectrum now. There is  NO Aspergers. So please, don't use that term to one up other autism parents. It hurts!

         Autism isn't a competition.

    I don't care where you or your child fall on the spectrum. My child doesn't care where you or your child fall on the spectrum. People are different. Autism is different. Not one of us is the same, neurotypical or otherwise.

    So in my world, there are no labels. Last year I was told I was on the spectrum. The term she used was HFA. No. I am NOT HFA. I am simply on the spectrum. Where I am on the spectrum depends on the day. My mood. The situation.

   Basically, my autism is my autism. Liam's autism is his autism. And your autism is your autism. No functioning labels, just autism.

A slap in the face....

    I don't like being slapped in the face. Physically or metaphorically. Yet, this is life and let's face it, it happens to ALL of us. Today my slap in the face was delivered through the phone.

    If you follow me, you know how I am about the phone. I don't answer. I don't call out on it. When it rings I become anxious. Why you ask? Because the older I get the MORE socially awkward I become. I get so anxious when I'm on the phone. I don't know when I should speak. I'm afraid of cutting someone off. I run out of things to talk about. Or the most annoying, my fibro fog takes over my brain and I forget what I was saying altogether! I digress.

    The phone rang today. I let it go to the machine (yes, we still have a machine. I refuse to pay for voicemail that I also hate to check) and heard it was Liam's cyber school psychologist. I was expecting this phone call, so that really helped. I answered and we began chatting.

   Side Note: I have been home schooling Liam since kindy. (Those that have followed our journey know that he only attended 4 days of kindy at which time we had to pull him due to a total autistic regression. He was officially diagnosed right after that.)

    She was returning my phone call because we have been playing email tag for a month or more. Liam has been reversing letters and numbers from the time he was a toddler and learning to write. They told me it was nothing to worry about. It would correct with age and was normal. However, our life isn't "normal," so of course, it has only gotten worse. Not only does he invert his numbers, write them backwards, and write his letters backwards, but when he writes, he starts at the BOTTOM and works UP. I correct him. He gets upset. "This is how I have to do it mommy!" Thus the reason for contacting the school.

   Moving on, the metaphorical slap is coming. So the psych and I talked about the pics I have sent her of his writing. She said there was no real "test" for dysgraphia and dyscalculia, only dyslexia. Then she went on to say, that judging by his reading comprehension scores, and by the writing samples, they believe him to have a reading/writing learning disability.

                                       There's that slap!

    I don't care who you are. If you tell me that hearing those words spoken about your child ISN'T, a slap in the face, then you're full of shit! I KNOW he has problems. I am with him 24/7. But HEARING it from another person, or SEEING it on an IEP is a whole other story.

     This child excels in math. To the point that it amazes me. His vocabulary and verbal context is amazing. (as long as it's a good day. on bad days, not so much)  He can also read great. Just don't expect him to be able to tell you WHAT he read. He can't. He just can't.

    So even though I knew this. Even though I expected to hear something along these lines, it still hurt. It seems like every damn time we turn around, someone is adding another label to him. I sit and wonder, how much one little boy can over come. How much until he breaks? How long until I can't teach him any more? What if I HAVE To send him back to brick and mortar school?

   Anyway,  he is now being re-evaluated by an OT and will be receiving services from a NEW OT. The one he has been working with assures me, "his writing looks fine to me." Yeah, okay lady. It looks great. Check it out!

NOTE: I'm NOT posting this to humiliate or demean my son. I am posting this because she is an Occupational Therapist and yet she sees NOTHING wrong with his writing. This is just a taste of it. Some are so much worse, but for his sake, I will not post them.

















   Oh and they are going to get him a talk to text program for the computer. Also, they are adding hours of OT for him too. This is great. Not as far as money goes because we all know that gas prices are ridiculous. We live in a rural community and travel 30 minutes one way to receive services. But he needs these services and like always, we will find a way. Our job is to make sure he gets what he needs to help him be a successful adult. And we will never give up that fight. Hurtful labels or not. <3

The Look

     Have you ever been out in public, talking to someone about your child's autism, and they give you the look. Or you run into a high school chum and when they ask you what you've been up to, and you tell them, "the autism life," and they give you that look?

     You know what look I mean. The "wow, I'm so sorry," look. Now, don't get me wrong, I'm not trying to condemn someone for having a heart. But that look! It makes my stomach flip, my heart skip a beat and for a split second, makes me angry.

             Hey, I'm only human.
 They are my feels and they are real.

I'm not trying to knock someone for being empathetic. I mean, yes, I would much rather you have empathy for our family, than for you be afraid of us, or hate us. But, it still hurts. It's still a blow.

    So I was thinking. Do me a favor. Do other autism or special needs parents a favor. Look at us with admiration. Look at my child and think, "Damn! That kid is kicking autism's ass today!" Or even, "Wow! That kid is defying Bipolar Disorder! Look at him! He's so happy. Working so hard at making the most of life!" Or hell, even tell him that.

 


 Admiration ROCKS!!!! It might just give us or our kiddos the extra nudge we might need that day. Caffeine, sugar, adrenaline, that only works so long. Sometimes we need moral support. Sadly, not every special needs parent gets that support. BE THAT SUPPORT!

 




 I guess what I'm saying is empathy is good, but keep it in check. Don't feel sorry for us. Some days are hard. Shit, some days I just want to crawl back into bed and cry. Some days I don't even want to get out of bed. Then I see that face. That little face that depends on me. That little face that looks to me, to help him face life. That little face that stole my heart, and taught me what true, unconditional love, really was. In the end, we're really not that much different from you.  Our struggles are different, but our needs are much the same.