SLP Mommy of Apraxia

Category: siblings

Having an Apraxia Sister is Hard.

We are in the middle of a pandemic called COVID 19.

History books will write of it, and you will have remembered living it.

The Corona Virus – or COVID 19 put the world to a stand still. Never before in the history of my lifetime or even your grandparents lifetime had the world come to a stop as it did in 2020.

Everything you could imagine was cancelled.

Basketball. Swimming. School. Church!! When I was a child church was never cancelled. It was a phenomenon never before seen.

You’re Aunt Kris is a certified teacher and we were beyond blessed to have her teach you while me and daddy worked. I had a schedule full of remedial skills to ensure you wouldn’t regress; however Kris tweeked the schedule and provided quality instruction that helped you learn.

Even so…in the midst of it, you and Ashlynn were rough housing. I told you to stop multiple times as I was worried someone would get hurt. On this particular day you two were rough housing normally but Ashlynn ended up flipped over from the couch slamming her head on the tile. After telling you two calmly and numerously to not fight my patience flew out the window and I snapped at Jace, “What is wrong with you??? Go to your room!!”

As he ran to his room he cried, “I’m sorry Ashlynn!.”

Ashlynn was wailing. I was scared. She doesn’t cry over physical pain. She doesn’t. For her to be crying I was extra worried she was even extra hurt.

“Having an apraxia sister is hard.”

He didn’t say it with contempt. He didn’t say it with anger. He said it matter of fact with a tinge of sadness. I asked him what was hard about it. He hung his head and said,

Everything.

I didn’t know what to do but to validate him and hug him. I told him I knew it was hard, and I was sorry. It’s hard for her too having all of her disabilities. It’s hard on me too. But this family does hard things.

And that was that. He left and went back to playing. Playing with HER. He’s a good kid my Jace.

Laura Smith, M.A. CCC-SLP is a 2014 graduate of Apraxia Kids Boot Camp, has completed the PROMPT Level 1 training, and the Kaufman Speech to Language Protocol (K-SLP). She is the author of Overcoming Apraxia and has lectured throughout the United States on CAS and related issues. Currently, Laura is a practicing SLP specializing in apraxia at her clinic A Mile High Speech Therapy in Aurora, Colorado.

March 29, 2020
A letter to my son, a sibling to a child with a disability

There’s this saying if you want to know how to treat a child with a disability or special needs, watch their sibling.

Today after school I chatted with a mom who has a child with Down Syndrome in third grade. We’ll call him M. Ashlynn my daughter is in the integrated learning center program with him though she is in 4th grade, but they frequently see each other in the resource room. This mom and I have a lot in common and so it was good to catch up on a brisk but sunny day in The Mile-High City.

My son who is in 2nd grade, darted off to play on the playground with the other kids whose parents were letting them play after school. Ashlynn and M played near us before finally going off to also play on the playground independently.

This mom and I were talking about things parents who have kids with special needs/disabilities always do. Increasing independence. IEP’s. SPED teachers. Para support. Special needs camp. Opportunities for inclusion. Peer socialization. Basically none of the same things parents who don’t have children with unique needs talk about and so when you find someone in your tribe there is a lot ot catch up on.

On the topic of peer socialization, we also had a lot in common. With other special needs kids our children our both leaders and outgoing. The problem lies with other “neurotypical” kids in society where it seems more difficult for them.

As we looked out on the playground, our two kids were playing happily on the slide with each other, but completely isolated from the other kids. All the other kids (including my son) of all ages were all playing with each other on the swings or on the blacktop. It was a perfect visual example of what we were in fact just talking about. I embarassedly remarked that even my son it seemed excluded them.

She was kind and laughed it off saying, “In his defense, he has to be around his sister all the time.”

The mom then begain telling me that some kids in M’s class had asked about Down Syndrome one day when she was there. She said they asked questions like “how did he get it?” The tone of their voice made her think they thought maybe you could “catch it” from being around him. My mind instantly flashed back to an apraxia awareness day event I had with a 5th grade student with apraxia who asked Ashlynn’s 2nd grade class who thought they could “catch it like a cold” and every child raised their hand.

I told her as much and we remarked that instead of OUR kids needing the socialization, perhaps it was the OTHER kids needing more education on those who have differences.

That’s when we looked back to the playground. All the other kids were still on the swings and blacktop playing and interacting with each other. Our kids with unique needs were still isolated by themselves on the slide. But something was different. Something that brought tears to my eyes.

My son Jace was on the slide with them. He was playfully giggling and engaging with both M and my daughter and they were all smiling and having the best time. From a distance it would have been impossible to tell there was a neurotypical kid, a kid with Down Syndrome, and a kid with a genetic mutation. From a distance there were just three kids playing on the slide.

Siblings. So wise. So authentic.

Literally one of the proudest days of my life being Jace’s mom.

Jace has it hard. He does. It’s not easy street being the sibling to a child who seemingly gets so much more attention. But today, I remembered that every situation can break us, or teach us and in turn, we can teach the world the lesson we learned through our example.

January 13, 2020
What is Adam’s Camp in Colorado?

I have known children who have attended Adam’s Camp in Granby, Colorado; and usually their needs were related to Autism, Down Syndrome, or Cerebral Palsy. It has an incredible reputation. Children who have attended this camp during the summer, have a full packet of goals and progress written by their therapists to take back to their school district and private therapists for the coming year. It is always a very impressive bunch of paperwork. I had never considered sending Ashlynn until I talked to a mom of a client of mine who has global apraxia and who has been attending now for at least 3 years.

The kids attend a 5 day camp in the mountains at a YMCA in Colorado, and they have therapy every day with a team of therapists that include: speech, OT, music therapy, art therapy, and a SPED teacher. In addition to this multi-disciplinary team approach to therapy, they go on fun outings that include: canoeing, swimming, tubing, horseback riding, and rock wall climbing.

I couldn’t wait for Ashlynn to have this experience. They have different weeks tailored to different disabilities. The global developmental delay group was full, but they found and opening for us on Down Syndrome Week and said there would still be kids with other disabilities. I was a little hesitant, only because Ashlynn doesn’t have Down Syndrome. lol. However, Ashlynn doesn’t really fit in anywhere. She has these major needs that require all those therapies, but she doesn’t have DS, or Autism, or CP. I said yes. Honestly, humans with Down Syndrome and Ashlynn have a lot in common; namely, their above average emotional intelligence.

So here we were! I rented a campsite because it was cheaper and had my husband haul our travel trailer up here, set us up in the campground, and then he drove back down to Denver to go back to work. I didn’t realize it, but this campus is HUGE! I NEEDED a car. I hitched a ride the first day and then had my parents bring up a spare for me to drive while I was here! It was quite the drama getting settled!

Adam’s Camp was founded by a woman who had triplets back in the mid 1980’s. One of them died shortly after birth, one of them, Adam, had CP, and the other was a typically developing child. She felt the need to have a camp where all therapists came together to treat the child, but she also recognized the unfortunate and unintended negative impact on a sibling to a child with special needs. They truly get the short end of the stick. So, Adam’s Camp has an amazing siblings camp that is reasonably priced staffed by excellent, experienced teachers who are nothing short of A-MAZING. Let’s put it this way. I was more worried about my neuro-typical son at camp than I was Ashlynn! He is very challenging and pushes every boundary. Also, he is very independent, opinionated, and moody; so if he doesn’t like something, we ALL are going to hear about it!

My worries were completely unfounded. Both kids had an AMAZING experience. Absolutely exceeded ALL expectations. I cannot say enough about this camp.

Jace’s sibling camp was more than just fun. It was therapeutic for him as well. Kids get to talk about their difficulties and hardships within the family dynamics as part of their “therapy,” and then they also get to do super fun outings. Jace did most of the things Ashlynn’s camp did plus roller skating, go-Karts, and more. My son got therapy at a summer camp for being a sibling to kid with special needs….like how groundbreaking and amazing is that???

Finally, parents’ emotional needs and well-being are also factored in and considered into this experience. Adam’s Camp sets up a variety of parent activities that they offer for free, including a parent’s night out! So many parents of kids with special needs find childcare hard. Their marriages suffer and they don’t get many opportunities to be just a couple again. Adam’s camp recognizes this as well.

They really, REALLY have their pulse on the entire familial dynamic related to having a child with special needs and do their best to provide this amazing and holistic approach to every member of the family. I’ve never seen anything like it honestly.

I can’t wait to write more about their experiences. I can’t do it all in this one blog post. Long story short though, is if you can go to Adam’s Camp, DO IT. More to come.

Professional and FREE photos taken as part of the experience.

I love you both with a love that has no bounds. I would breathe my dying breath for each of you. I know you have special challenges that each of you face, but I hope you also know you never have to face them alone.

July 20, 2017
An open letter to siblings. Always be there for each other.

Jace, not only have you had an EXCELLENT and continued start to the school year, I am so proud of you for your behavior at this year’s apraxia walk. I know it’s not easy to see Ashlynn get a medal for apraxia, and you don’t understand why. Not yet anyway. Either way though, you stick by her side, held the sign during the walk, and supported her the best way you could.

You asked me why you didn’t have apraxia, as though it was something to want to have. Though this makes me happy for Ashlynn’s sake, it also makes me sad. One day, when you understand what apraxia is, you will also understand it is not something to envy, and because of it, this may be the only award she earns during her school career.

I see you in karate. We put you in this so you had something to be proud of that was just your own! It worked. Your motor skills are developing at lightening pace speed. As your mom, it’s remarkable to witness. Both your grandfathers on each side were very athletic. They had great “natural ability” as my dad describes it. You have that too. I see it. I want you to remember Ashlynn cheers you on at your karate classes. She is your loudest supporter when you earn a new belt, and I want Ashlynn to remember how you were there for her too at her apraxia walk; cheering her on and holding her sign when she got tired.

My dad, your grandfather, is a BIG believer in family. He’s like this because his youngest brother, my godfather, died at 27. I don’t think he’s ever forgiven himself for it, even though it was not his fault. He always told me though, had his brother called family…aka him…aka your grandpa….he wouldn’t have been dead. He wanted to make sure the same for me and my siblings, and I want to make sure the same is true for you and Ashlynn. Regardless of your fights or squabbles, at the end of the day, family MUST always be there for each other. That is the blessing of a family. That is the gift of a family. Family is love, and as Corinthians reminds us:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always hopes, ALWAYS perseveres.

Whatever the challenge, a parent’s greatest wish is that her children, whom she loves equally, will be there for each other as well. In my absence or presence, I always want you two to “have each other’s back.” The world can be cruel. It can be lonely….but one thing you should always be able to count on is your family.

This year, even cousins came. 1st cousins and 4th cousins!! My heart literally swelled. To have that kind of support is a blessing, but it’s also taught. I was taught to be there for family, and I wish to instill the same value in you.

4th Cousins!!

First cousin Kayla!

3rd and 4th cousins!

I’m proud to be part of this family. I’m proud of both of you! Don’t ever take for granted or squander the blessing of your family. You will both drive each other crazy at times and you will hurt each other at times, but always remember, love is not easily angered and it keeps no record of wrongs. Please always love each other like you do now. That is my greatest wish.

I love you both so much.

Love,

Mommy

Love,

Mommy

September 27, 2016
Did we squash my son’s light to save my daughter’s?

As most of you know, I’m SLPMommyofApraxia – referring to the fact that I’m an SLP and mom to a child with apraxia. I’m also a mom to a typical developing, smart, energetic, and curious 3 year old, little J.

I have my own private blog for J, because somewhere along the way I decided I like to document my kids’ lives through my own written words. No one can tell their story like me, and I hope one day they will enjoy reading their story through their mother’s eyes.

However, today I’m writing about J here because my husband and I realized something the other day. In the midst of our worry about A and our exhaustive daily struggles to help her master the simplest of daily living tasks, J was meeting and surpassing them daily. Of course we were proud, but we had some unspoken, never said aloud agreement, that we wouldn’t praise J too loudly so as not to hurt our daughter who has literally worked years to not yet master some things J can now do.

However, in the process, I started to notice J seemed to be acting out so much more. Yes, he is two and just turned three, but it seemed so much more than the typical terrible twos and horrible threes.

One night our kids were getting ready for bed. A was struggling to put her clothes on, and J whizzed through quickly and had his jammy tops and bottoms on in no time. My husband then instructed him to put on his socks and he protested. As I watched this, I realized on the rare occasion A can completely dress herself without help, we praise her to high heaven. Here my son did it, and we were barking at him to now get his socks on. He threw a tantrum, he got in trouble, the night ended on a bad note.

The next night found us again in the same scenario. A was putting her pull-up on backwards (yes she is still in a night pull-up because her global apraxia issues along with SPD make it impossible for her to even know she wet herself at night), missing the wrong leg hole, etc etc…..and J had whipped on his clothes. He was again instructed to put on his socks. He did unlike the previous night without protest, and instead of praise, he was met with…now get in and brush your teeth…tantrum ensued.

And that’s when it hit me. My poor little dude needs praise. If he were our first child, we would be singing his achievements for all to hear! We would be so proud and be telling everyone who would listen. We would probably be posting facebook updates on our prodigy and the newest thing he learned.

But we weren’t. So scared to discourage A, we remained silent….and me…knowing the pain other moms of special needs kids feel when someone posts about their typical developing child doing typical or extraordinary things, I remained silent, only keeping a private blog so that he knew one day just how proud I really am of him.

What is one to do? I talked to my husband and told him he never praises J. He admitted all the same things I felt. I expect more of him. I know he can do it. I don’t have to worry about him.

I said again he never praises J, and in that moment we both were solemn. He said he didn’t want to hurt A. In the process though, were we hurting our son? Every child wants their parent to feel proud of them. The cards our daughtger were dealt aren’t fair, but does that mean our son has to suffer too?

He is made to tag along waiting in the waiting room while A goes to school, to speech, to O/T, and private swim lessons. As a baby I was just trying to keep him busy, but as he has grown into a toddler he has began protesting that he too wanted to go: to school, to speech, to O/T, to private swim. The day we told him he could go to private swim if he pooped in the potty, he pooped and kept saying over and over “I pooped in the potty! Now I can go to swimming with Josh! (the swim teacher’s name).” When he went, he was miserable and cold, but he never complained. He tried his best, he looked for…..praise.

I decided to start a sticker chart for both of them. Anytime they did something that made me proud, they earned a sticker. When it was filled up, they got a prize of their choice. I already see a change in Jace. His face lights up when he hears he has made us proud. He kisses me more. I used to say he was my snuggle bear, and I have my snuggle bear back. He’s such a little lovey…and you know what? A is not crushed. We should have known. That girl is incredible. She cheers for him too and tells him good job. Tonight, they declared at the dinner table together,

“We love each other.”

And we do. We have so much love here, and I don’t want to hide any of it anymore because it might hurt someone’s feelings. We all have different strengths and talents, and if we don’t have a strength or talent someone else possesses, we shouldn’t be jealous. In turn, if we have a talent or strength someone else doesn’t have, we should be allowed to proud, because that is what makes us all unique.

We should be cheering each other on and praising each other’s successes, making sure we let them know just how proud we are of them and of each other….. just like A does, despite all her challenges. I have so much to learn from her.

July 11, 2015