As a parent or therapist, we celebrate our children’s successes. Every milestone, every improvement, every victory. Your baby’s first hair cut, first steps – you probably documented it in their baby book. Unless it is a second or third child….then they probably don’t even have a baby book! (Hopefully they at least got a post on Facebook.) My brand new nephew just rolled over for the first time this weekend. It is super exciting to see our babies grow and learn new things.
Month: January 2018
“He Won’t Talk”
Today’s soapbox post comes from your friendly local speech language pathologist! Here it is, the phrase that, when it hits my eardrums, gets my blood boiling:
“He doesn’t have to talk because you talk for him.”
Or it might sound something like this:
“He’s just lazy.”
“He talks when he wants to.”
“You get him everything he wants, so he doesn’t have to talk.”
AHHHH! Just typing those out made my blood pressure skyrocket and my pulse elevate a good ten beats per minute.
I hear this quite frequently about Colin, but really, I also hear it professionally about other children too. Friends, here’s the thing though: there is a big difference between “won’t” and “can’t.”
“Won’t” is a choice. “Won’t” means “I can physically and cognitively do this, but I am making the willful decision not to do it.”
“Can’t,” according to Merriam-Webster, means “unable to do.”
Children who aren’t talking, for whatever reason, can’t talk. Imagine yourself in Colin’s shoes: you want a drink. You take Mommy to the kitchen and show her that you want something in the fridge. You open the door and she says, “What do you want?” You point to the juice. She says, “Juice. Tell me juice.” She asks you to repeat her several times. You begin to squeal and point. You just want a drink of juice! You start to get frustrated because 1) you have already shown her what you want, and 2) the word just isn’t coming out!
Now, in that situation, wouldn’t you just say the word “juice” if you could? If someone is withholding the thing you want, and allllll you have to do to get it, is name it, you would absolutely do that!
If a child isn’t talking, I’m willing to bet it’s a “can’t” issue versus a “won’t” issue. That is why I get so worked up when someone tells me that he “doesn’t have to talk, so he doesn’t.” He gets frustrated when he wants something and I don’t know what he wants. There are times that I am sure he would love to tell me “I am done with this, let’s go!” ….but he can’t.
I also have to chuckle when someone says, “well you do everything for him, so he doesn’t have to talk.” You do realize that you’re talking an SLP, right?! I am the mom who has put everything he wants (or might want) out of reach or inside a locked cabinet just so he has to come get me and show me what he wants. Then, once he shows me, I model the heck out of that word in hopes that he will imitate me. I am the queen of sabotaging his environment to create opportunities for language. Yes, I usually anticipate his needs, but I still make him work for it! He might be my first child with special needs, but this ain’t my first rodeo, so to speak!
I know he gets frustrated when he can’t communicate what he wants or needs. I have to read his cues and know when it is time to stop pushing for verbal words. Sometimes, words do come out. I can see the excitement on his face after he says something and we praise him. His little eyes light up, and he is so proud of himself…and we are always proud of him, words, or no words.
Getting a Diagnosis
People ask me how I handled Colin’s diagnosis, and here’s my answer: I think I handled it really well.
I’ve always known he was different, so I wasn’t shocked or blindsided by a diagnosis. We ended up seeking out a diagnosis because we knew we would need it in order for him to get the services he needed (like ABA therapy). I knew that the day we went in for “the appointment” that we would leave with an “official” autism diagnosis.
Not the answer you expected?…Then maybe this is: I still cried. You see, even though I knew it deep down, it is hard to hear that your child will forever carry this diagnosis and is labeled “special needs.” It’s hard. And it stinks.
The hardest part for me was feeling like I had failed him. I took a leave of absence from my job this year so that I could be home with him. I could work with him one-on-one and really target the areas that were most affected. Maybe, just maybe, we could improve those areas enough that he would avoid a diagnosis.
So when I bit the bullet and scheduled the appointment for his psychological evaluation, in a way, I was admitting defeat. I was admitting that I couldn’t fix him, I couldn’t fix those little things that all added up to “autism.”
Being a therapist, I had placed so much burden on myself to do just that: fix him. I mean, what kind of therapist am I if I can’t help my own son? Even worse, what kind of mother does that make me if I can’t fix him?
As I write this, I see the error of my thought process. He doesn’t need to be fixed, he just needs to be helped. His brain may work differently, but he isn’t broken. He will (most likely) never learn the same way Finley does, but that doesn’t make Colin’s learning style insufficient in any way. He may take longer to learn things, and that’s okay too.
We take each day as it comes. We truck through the rough moments and celebrate his victories. Some days I think about his future, and I worry what that will look like. I just want him to be happy…isn’t that what we all want for our children?
This is why I started this blog. I want to raise awareness and acceptance so that he can live in a world where he is understood, accepted, and happy. He is different, not less.
Autism doesn’t make the boy!
Autism might dictate his behavior, but it does not define his character.
What does that even mean?
Because Colin has autism, I can expect him to behave in certain ways. He gets overwhelmed in stores and might cover his ears. He sometimes screams. Visually, he is drawn to certain things – he could watch flowing water indefinitely. If someone asks him a question, he doesn’t verbally answer, and might not even acknowledge their presence at all. He enjoys doing things like shaking tassels. He likes to drop things just to watch them fall (like balloons or confetti).
I say autism dictates these behaviors because they are pretty typical of what you see in someone with autism. If I saw a stranger doing these things, I would assume they have autism too.
BUT….these behaviors do not make him Colin. Autism does not define his character. You see, no two people with autism are alike! My own grandmother has a hard time with this concept. She once knew a person with autism, so she assumes everyone with autism should be like him.
Colin is happy. He is almost always smiling at home (now this isn’t always the case when we are out and about, but going out can be stressful and difficult for him). Not to say that he is never frustrated or angry, he is human, afterall!
He is the best cuddler I know. He is very affectionate, always giving hugs and kisses. I call him my little love bug. If we are on the couch, you can bet that he’s right there cuddling.
He absolutely loves the Muppets. He loves sticker books. He loves his big brother and enjoys wrestling and cuddling with him. He’s also a big fan of cars, balls, balloons, and bubbles. He’s never met a trampoline he didn’t like. He would live outside if he could. He loves swimming, playing in the dirt, running and taking walks, and being with his 50+ chickens and ducks.
He might have autism, but that isn’t who he is. I think that is what I most want people to know. He is still just a little boy with his own (very sweet) personality!
Thank You, Disney
Dear Walt Disney World,
Thank you.
Our family just completed our second annual Disney vacation. As expected, our trip was fun, exciting, sentimental, magical (and exhausting).
I have two sons, a four year old and a three year old. My three year old is on the autism spectrum. His diagnosis can make vacations (and ordinary day-to-day outtings) difficult, but you helped make our trip amazing. Please accept my thanks and virtual high five!
Thank you for understanding that kids like my son cannot handle waiting in extremely long lines. Thank you for providing a disability pass for our family so we could still enjoy rides without a meltdown.
Thank you for providing food options for those with dietary restrictions. You go out of your way to make sure everyone can safely enjoy every meal while on property.
Thank you for providing companion bathrooms. I am sure that families who have bigger children and adults who need assistance are grateful for companion bathrooms.
Thank you for rides where he can sit on my lap. He feels more secure sitting on someone’s lap rather than a seat, and no one ever questioned him lap-sitting.
Thank you for understanding cast members who are ever so accomodating.
Thank you for characters who always took the time to interact with Colin. Every single princess made sure to talk to him, even if he didn’t make eye contact. They never questioned why he didn’t answer their questions. When he screamed, not a single character even flinched. Thank you for showing him the same love and acceptance that you showed to my older son.
Oh, I almost forgot! Thank you for exhausting him to the point that he slept 8 hours straight last night. (All my autism parents out there, can I get an AMEN?!)
Thanks for the memories, Disney!
Until next year,
Deidra
Sensory Room
When we first moved into our home, we decided that we wanted a play space for the boys in the basement. Curtis worked on this room all summer and fall our first year here. This was their Christmas present our first holiday season in our new home. At the time, I just knew that I wanted a space for them to play during the cold winter months when we couldn’t play outside. It turned out to be a great asset as we unraveled Colin’s sensory needs.
Colin has always been a mover and shaker, so I looked for ways to give him the movement opportunities that he needed. Once, I found this amazing website that would build a sensory room for you!! Say, what?! A whole room?! Yes, please! Sign me up….until I saw the price. I think they ranged from $8,000-$12,000 if my memory serves me correctly.
Friends, you can put together your own sensory room for much, much, much less. Here are some things that worked for our family. (All of the pictures are clickable links for you!)
Colin was always a low tone kid, but that has greatly improved with the use of his trampoline. If you would have told me five years ago that I would have a trampoline inside my house, I would have told you that you were nuts! Seriously, he jumps every single day, and I don’t know where we would be or what we would do without the trampoline. Here is a link to one if you are interested:
The trampoline has also been great for Finley too. You know, because all four year olds need to practice their ninja moves.
We also love these peanut balls: (they are really sturdy and even hold me!)
The swing has been good for his vestibular system. Colin used to be terrified of swinging, so we ended up getting this circular swing and kept it low to the ground. Now he loves to swing fairly high and loves to spin in it. (Mommy, on the other hand, gets nauseated just looking at them spin in it…blah.) I believe we got ours at Home Depot, but this one is similar:
Big Brother
Do you know that a sizable portion of my fears and worries about Colin’s diagnosis are actual for his brother? I’d say at least 25%. No, maybe 30-35%. I worry about Finn almost as much as I worry about Colin.
How will Finn handle his brother’s diagnosis as he gets older? Will other kids pick on him because his brother has special needs?
My heart breaks a little each time Finn wants Colin to play with him. I rejoice in the moments when he does play with him. Finn makes comments every now and then about Colin not talking yet. He used to say, “Colin is still a baby so he can’t talk.” I always explain that he is a big boy, but talking is hard for him. The other day he said, “Why did Colin grow up to be a big boy but can’t talk?” Holding back tears, I explained autism to him. I said that Colin’s brain just works a little differently, and talking is hard for him, but he is learning. Finn was satisfied with that answer for now.
Finley is such a sweet, caring, compassionate boy. I think that having a brother with special needs will only encourage him to build upon those characteristics. I often tell Finn that God chose him to be Colin’s big brother because he is the best big brother in the whole world. God knew that Colin was going to need the best brother to look out for him and to love him.
I took this picture on Thanksgiving. You see Finn’s arm around Colin. This is the only way we could get Colin to stand still for two seconds because he so desperately wanted my cell phone. Finn is a trooper, even though, during picture taking, he said, “this is the worst day of my life.”
I look at this picture and see their personalities so clearly. Colin is wildly happy and energetic with a contagious smile. Finn has his little grin and gleaming old-soul eyes. He has arm protectively around his baby brother. He will always be there for him and have his back. I pray that they have a close relationship as they grow. I pray that Colin looks up to Finn, and that Finn will love him and look out for him as only a big brother can.
Walmarting
“Today was just a simple, quick and easy WalMart trip,” said no autism mom ever.
Except, I DID say it today! Store trips are something that we have had to work on. Colin gets overwhelmed easily, and his flight response kicks in, and he is outta there. He also screams. It’s high pitch, it hurts your ears. I have, many times, ended up wrangling him by the time we get to checkput and people look at me like I’m a crazy lady. I am sure I look like a crazy lady, too, because I undoubtedly have broken a sweat and am red-faced. If Curtis and I are there together, one of us sometimes just takes him out to the car so he doesn’t have to wait in the checkout line.
Today, he and I go in, and he willingly got into the buggy. He sat down and just looked around. I’m not even lying, I just pushed him around for a bit just to see if he could do it. And he did! *insert proud mom smile*
We had to wait at the pharmacy for some medicine, so he wanted my phone then, but whatevs. He hasn’t even acted like he wanted it before then. So hashtag win.
I gave it to him for the rest of the trip. We literally only got 2 things today, so it was a short-lived stent in the Walmarts. Some people might not agree with that, but we are babystepping, people. Im sure the rest of the WalMart shoppers were unknowingly happy for my decision too.
I know that our next shopping trip could be a disaster, but not today. Today, he was happy to be there. I didn’t break a sweat. Nobody stared at us or judged. Again, thats a #win!
Control
Recently, I have had this crazy need to clean and organize. I would say that it’s a compulsion. I would equate it to nesting, where you feel like you can’t function until things are in their places.
I’ve always enjoyed a clean house. I completed most of the Konmari tidying up steps several years ago (and yes, it really is the best way to organize. And yes, it actually lasts!). Any time the boys are gone or otherwise occupied, I don’t Netflix and chill, I clean.
I’d say I’ve been OCD-level for the last month or so. On the plus side, I’ve gotten alot of organizing done…on the downside, I know I’m missing out time with the boys because of it. I always think, “oh, just this one more thing and I’ll be able to focus on (insert whatever task).” But really, it’s never done.
I had no idea why I had this sudden urge…until today.
You see, I’ve always had a need to control things. Time and time again, God shows me that I’m not in control:
-Infertility
-pregnancy loss
-Surprise pregnancy with Colin
-Colin’s autism diagnosis
All of these things, completely out of my control. God used all of these things to teach me lessons. 1) I’m not in control, He is. 2) His plans are bigger than anything I could ever imagine.
I came through all of these things a better person, more understanding. Closer to God. Stronger.
Colin’s diagnosis, although I’ve honestly known it since he was one year old, has only been official for a couple of months. I didn’t know that I would, but I guess I’ve had a mourning period.
I had this epiphany last night: I think that my obsessive need to clean and organize comes from needing control. I think that organizing my house is a way to control something when our future is so out of my control.
So as we start a new year, I guess I’m learning (again) that I cannot control everything. I need to let go and just live the life God had planned for us long before we were even born.