A family's story

Posts tagged ‘Hope’

The Good Stuff

Last week Tate’s 5th grade class participated in their outdoor education field trip. It’s a 3-day, 2-night trip to a state park. While the students are there, they are learning teamwork, independence, resilience and accountability. I love that our district provides this opportunity for its students at this age. 10/11 year olds are so much more capable of this type of work than we give them credit for.

I was incredibly uneasy about how Tate would handle the rigors of the trip. The teachers do a phenomenal job preparing the students for the trip. They discuss manners, practice family-style lunch, view videos and learn about the schedules of their day. The trip is highly structured, but it is also in a foreign environment, has “outside” instructors, and they are out in the elements. We talked about the trip at home, too. I knew he was prepared, but yet, it was so NEW and DIFFERENT. Those two things, alone, can be a minefield for my kid.

After discussions with his team and other parents, Hubz and I decided that I’d go down to the area where the trip was taking place and stay with Tate overnight in a hotel. We cut his trip to 2 days and 1 night. He DID get to take the bus with his peers, and he participated in almost all of the activities each day he was there.

Tate handled the trip quite well. Yes, he had anxiety. Yes, he didn’t sleep for 3 nights prior to the trip. But, he did it. I’m grateful that the team allowed flexibility, because Tate did sleep quite well in the hotel, and I know if he had been in the group dorms, it would not have gone so well.

One of the activities that the students do is to do birdwatching. Tate is a natural. His keen eye and ability to see the thing that is out of place in a background lent itself well to this endeavor. In fact, he enjoyed it so much and did such a great job explaining the birds to his peers that his team decided to have him do birdwatching both days, and it was great! He also really enjoyed building a shelter out of branches, leaves and twigs. The heavy work was perfect OT for him.

Each day that I picked Tate up from the event, his teacher told me that he handled it well and reported a few struggles, but nothing out of the ordinary and nothing that couldn’t be redirected. Also, Tate LOVED doing the table prep and bussing (they called it hopping). He was a pro, and even did a phenomenal job rinsing dishes in the kitchen.

To some, that might not seem like a big deal, but to anyone who has kids with differing abilities and neurodiversity, well, it was celebration time! If he can bus tables successfully at age 10, then what’s to say he can’t do that as an older teen? If he can follow “job” requirements and rules as a 5th grader, what’s to say he won’t be able to do that at age 18?

When we pulled out of the parking lot and headed home on his last day with his class, he thanked me for taking him. I thanked him for being a good sport. Then he told me to relax and turn the radio up. Adele was on and I was talking too much. My kiddo was brave. He was adventurous. He ate freaking turkey and mashed potatoes for dinner! The sky is the limit, my friends.

As we plod through the next few months of 5th grade and power through evaluations and testing, this experience gave me so much hope for what he’s going to be able to accomplish in middle school. He may not learn in a typical way, but he can and will learn. That much is for sure.

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I’m not “Super Mom”

A few days ago we had a play date with a few of Cole’s preschool friends. I love that this class is getting together outside of school. At his prior preschool, we were not asked to do any play dates, and the couple of times I reached out to other parents, there were conflicts. I love being able to chat with other moms as our kids play together. The best part? The kids run the gamut from typical to very much not…and yet, they all treat each other with respect. The ones who are more able help the ones who aren’t…and they encourage the ones who have weaker skills to keep trying. No one has been left out. They all play together. It is heartwarming every time.

Anyway, the discussion turned to IEP’s and meetings and goals. I would chime in occasionally to suggest a contact. Or a phrase to use when asking for services. Or a way to find an outside therapist who could give the team some valuable information. I used “the lingo” of special education. Someone asked me if Cole had an IEP. I clarified that he does not, but that his brothers both do, and that we’ve been working with the special education folks for almost 7 years. We talked about being prepared. We talked about doing research, reading and reading and reading, and consulting with specialists. We talked about getting an advocate, when necessary.

After a while, I mentioned my “binder of power” for each of the boys. I talked about how I color coordinate the binders, and folders and notebooks, so that each kiddo has his own color. Another mom looked at me with awe. “You are super mom,” she said. “I feel so incompetent compared to you.” I stopped. I could feel the color rush to my cheeks. I’m definitely not “Super Mom”. I definitely do NOT have my shtuff together all of the time. I definitely feel very incompetent often as we tweak goals and plans throughout the year. I assured her that I was not “Super Mom”, not by a long shot!

I was suddenly transported back to Jake’s first IEP meeting. The school SLP was going on and on in a language that was foreign to me. What the heck was pragmatic speech? What did she mean by Expressive/Receptive Language disorder? I was there because he sounded like he was speaking Swahili sometimes because he didn’t pause between words. He just rambled on and on and on…and he had some formation and articulation issues, too. What the what now?!

I then told the group that I have been through so many evaluations now, filled out so many forms, read so many blogs, specialty websites, and books, that my head spins. I’ve researched Wright’s Law. I learn something new, almost daily, about special education, the disorders my children have and how to attempt to help them, and how to get a FAPE for my kids. I assured the mom that she’d get there. And I offered to help out if she wanted any help. Even if it was just to bounce off some fears and frustrations…she thanked me.

So many people think, “I could never do what you do.” I hear it often. Yet, if it were their child, I know that they would do it. You just…do. I am not “Super Mom”. No….but I’d like to think that I’m a mom who has worked her butt off to learn as much as she can about what makes her kids tick and how to help them. I have PHd’s in my kids..and that’s what matters. It isn’t a “Super Mom” thing…it’s a Mom thing. We become experts on our kids…and we will do whatever it takes to get them what they need to succeed in life.

There’s always a first time

Tate has had a language explosion as of late. I love how he has these, even at almost 8 years of age. Nearly everyone who works with Tate has remarked about his language. He’s conversing more. He’s able to express himself better. He’s really communicating. This has been in the works for ages…and little by little we’ve noticed small steps forward. Like being able to tell his brothers that he would like to watch SpongeBob and not Pokemon. Like being able to tell me that the pizza is too hot for his mouth…and asking me to blow on it to cool it off. Like telling his friends at school that he likes their shirt/folder/backpack.

As he has built these skills through practice and numerous therapy sessions, it has brought me to yet another place of amazement. I really need to get over that feeling…I mean, I fully expect that his brothers will be able to communicate effectively as adults….why not Tate? He may do it slightly differently than the average bear, but by now we are perfectly okay with that…just as long as he feels like he has a voice and is being heard.

A few weeks ago after his speech therapy session, his SLP said she was going to evaluate him. She felt like he had made tremendous progress in the past year. Last week, he chose to do the “hard” assessment. She ran through the first battery of questions with Tate. He needed to pace around the room and bounce on the stability ball, but he got through the session and the assessment during their session.

He came out of the room, bee-lined for me, and asked if he could use my phone. I let him play with it while I talked to his SLP. She went over what she had done, and roughly, how he had scored. Are you sitting down? Ready? For the first time EVER, Tate tested at age level in one of the areas. He can name attributes of randomly selected objects like any other 8 year old. He scored at age level. Whoooo hooooo! I was so proud of him. His SLP also went over the other sections. His progress is astounding. He is gaining speech so rapidly.

I wish I could go back to that frightened, unsure person that I was in 2008 when we first had him evaluated for speech/language delay. I would give her a huge hug, tell her to keep moving forward and to throw away all of the timelines. To stop comparing him to all the other kids his age. To let him take the lead, so to speak, with his development. With persistence, dedication, and hard work, he’d get there–in. his. own. time.

Tate works hard. He has school. He has therapy. He has daily interactions that test his strengths and force him out of his comfort zone. He is, thankfully, finding ways to cope and succeed. He is learning that society isn’t going to hand him anything on a silver platter. He’s learning that hard work and dedication and being himself and stopping to laugh and spin and flap will get him what he needs in life. He is going to do great things…and I am so privileged to be on the sidelines cheering him on as he moves forward!!

The Light

The end of January and the beginning of February were a big, gray bucket of suck. I don’t care what anyone tells you, but when you have a child who is hurting, and you’re grasping at straws to try to figure out how to help that child, it rips you apart in ways that have lasting marks.

We spent a lot of time over the past month hashing out ways to help Jake. Ways to make life easier for him. Actions that we (and the school) could take to help him find his happy…his calm. It was an arduous task. It threw us WAY out of our comfort zone. Every time I was going to take the easy way, though, I’d ask myself….”Is this RIGHT?” Many times, I felt it was not. A few weeks after our lives were thrown upside own, we are finding our way to the light. I’m noticing more “hope-y” things in our days, in our moments. That is so important. And, amazingly, as we were going through the struggles with Jake, Tate has been coming into his own.

Juggling three kids is one of the most difficult jobs I have ever, EVER had. I wish I could talk to my mom about it. She did it with such aplomb. She made it look easy. I wish I knew her secrets. (Even if they were that she’d down a box of chocolate every night after we were in bed…) I try to meet all of their needs. I feel like I’m flailing and stumbling and bumbling around..but then the kids do something awesome, and I’m encouraged…maybe I’m not totally botching this parenting gig.

We’re seeing the light…we’re finding our way out of this bucket of suck. Just yesterday, Jake told me that he had a great day at school. He’s been more open with me ever since we had our big talk earlier this month. When Hubz and I talked to him and shared some of our childhood fears and struggles, I think that made Jake see that we weren’t these superhumans….we are kind of like him. Or he’s like us. Anyway, I hear more about what’s hard, what’s not, what makes him happy, and what he finds frustrating. These conversations, while not always the easiest to have (I have to put on my SLP/Social Worker hat), are valuable to get insight into his life. I can honestly say that since he told us about the bullying incidents at school, he is happier. He is less withdrawn. His anxiety isn’t nearly as high as it was. He isn’t upset about going to school. He knows he has safe places there. And that makes my heart happy.

Jake is also less afraid to ask us to explain what we are talking about. Hubz and I sometimes forget that we’re smarter than the average bear. Not to toot our own horns, but we use advanced vocabulary and idioms, sarcasm, and the like. Having two children with speech and language issues and learning how to communicate with them is something that we’re still learning. We’re much better, but it is a process. Since Hubz and I had our big talk with Jake, Jake will ask me to explain what I’m saying more. If I use a word he is unfamiliar with, he doesn’t just let it go, he is asking what I mean. I have also been watching his cues, and when I can see that he doesn’t understand, I’ll ask if he wants me to explain my words. Often he’ll nod sheepishly…and I explain what I’m talking about in a 10-year-old-friendly way.

I feel good about getting some therapy lined up for Jake, as well. We are seeing his psychiatrist this Saturday to discuss his medications, anxiety, and focus. In 2 weeks he will start to see a pediatric psychologist who specializes in anxiety and ADHD. I hope that it helps him to talk to someone who is a neutral party and can just let him get the weight of the world off of his little shoulders.

As we have been preoccupied with all things Jake and 4th grade, Tate has been really coming along. I know parents of autistics say it all of the time, but the progress happens little by little and then BAM!, you realize that your child is doing something that at one time was thought to be damn near impossible. For instance? Tate is having conversations with his peers! During ABA, they read social stories and model conversation starters. He is generalizing these with us AND with his friends at school. During ABA they are modeling appropriate ways to get attention, such as, “Hey there!” or “Hi, (insert person’s name)!” or “I really like your new shirt!”. Tate generalized this at school, complimenting his teacher on her headband, and one of his aides on her sweater. He told one of the girls that he liked her shoes, too. LOVE IT! This is a HUGE step for my kiddo…I’m so proud of him!

Another thing that Tate has been doing is that he asks to have privacy. He escapes to the living room, or goes under the dining room table, or even goes upstairs to our homework room. When he is alone, he does some of his stimmy behaviors or echolalia. He knows he needs it. And we all know he needs it. The beauty is that more times than not, he is able to re-engage with us after a period of his stimmies. I am so proud of him for advocating for himself. And I’m proud of Jake and Cole for respecting the fact that Tate sometimes needs to immerse himself in his stims.

So, even though we have had our bumps and bruises lately, we still have plenty to enjoy. We are emerging from that hard place and into some hope and happy times. And the light feels great.

First Day of School 2013-Pic overload

All three of my boys started school today. A part of me cannot believe that they are in 4th grade, 2nd grade, and 4-year-old preschool! However, I was so incredibly grateful that they went back to the school routine today. I am going to admit something…I’m not one of those stay-at-home-moms who is beside herself when her kids are off at school. I relish my 2 and a half hours of alone time. When I came home after dropping my boys off, I felt refreshed, I felt renewed, I felt…peaceful. No tears…no heavy heart…no wishing the moments away until they are back home.

Honestly, I was not only excited for me, but for them, as well. A new school year is a new adventure…and a clean slate. All of the junk from the year before is the past…and they can move forward with hope and joy.

Jake is in fourth grade now. I loved fourth grade. I remember my teacher very well. Sister Adria. She was pretty old school and no nonsense. She had a sign in our room, “I am responsible for my actions at all times.” I will never forget that. She really tried to instill a sense of personal responsibility in all of us…that and perfect penmanship, but that was lost on me. The responsibility thing, though, that stuck. Also, we did a Christmas play that year, and I had my first experience on Student Council. I turned 10 years old…and had sleepover parties several weekends throughout the year. It was a year of growth and independence. I loved so much of it! (It was also the year of a bad haircut….but we’ll save that story for another day…)

Tate is a second grader!!! I cannot believe how much older he seems lately…and how much progress he made this summer. He is trying to engage peers. He is advocating for himself more. He is interested in so much more around him than he has been in the past. And he is quite a little jokester! He has a great team at school, and a new team at home for ABA. His prospects look great for a fantastic year!

And Cole. Cole is my precocious little preschooler. How we have gotten to the 4-year-old preschool mark I will never know. I swear I was just bringing him home from the hospital, and here we are…getting him settled into a five-day-a-week preschool program. One of the staff told me that he did great today–jumped right in and played with new kiddos and engaged the teacher in a discussion about his new Transformer toy. I loved hearing about his day, in his words, during our 5 minute ride home. He was full of stories about his first day. When I told him he is going again tomorrow, I got that oh-so-adorable preschooler “yayyyy!” with a clap.

I know it won’t be fantastic all of the time. I know that some bumps and bruises lie ahead…but all the same, I am looking forward to this year for my kids!

Now’s the part of the post where I bore you with back-to-school photos. I’m sure you’ll be groaning as much as my boys were this morning.

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I am…Cole-ja-go, Preschool Ninja Warrior!

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4th, 2nd, and 4-y.o. preschool here we come!

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Let’s try separating them a bit for a better pic–um, well, maybe.

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Cole & Jake share a moment as Tate hams for the camera

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No worries, Jake. I got your back.

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Preschool rocks!

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Not so sure about this 4th grade stuff….

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Second grade?! I got this!

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My boysies and me

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And with Hubz…can we be done yet?

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And this is the look one gets when asking her 4th grader for a nice smile in front of the school. “But Mo-om, there are people here. This is embarrassing!!!”

 

 

 

Play Date–results show

Tate’s play date went about as expected yesterday. We got there first, and all three of my boys bee-lined for the swings. Jake helped Cole, and Tate managed to scramble up on his own. Our ABA therapist pushed Tate once, and then told him he had to do the rest. We were there for about five minutes before Tate’s friend arrived. Upon his friend’s arrival, our therapist stopped Tate’s swing and coached him on a greeting.

Tate got off of his swing, walked up to his friend, and said, “Hey ___, want to go on the swings?” Tate’s friend looked a little groggy–like he’d fallen asleep in the car. He was very shy, and was hiding behind his mom. He shrugged, and with a little prodding from his mom, he joined Tate by the swings. The boys started to swing, and the therapist and I prompted Tate to start a conversation. Tate followed our prompts and initiated the talking. His friend, who was still acting a little shy, was giving one word answers. (While a part of me was relieved that my children aren’t the only ones who struggle with “forced” conversation, the other part was like, “Oh, come on now! Say something to get Tate involved!!”)

The boys moved about the park. Tate’s friend initiated two interactions of play, just two, in the entire 65 minutes that they “played”. We prompted Tate to initiate some others. Most of the choices allowed for back-and-forth and good interaction. There was one, though, that backfired. The boys made a decision to climb atop a structure. Jake had just done the same thing. So did another boy about Jake’s age. Tate went first and got stuck. He managed to get himself to the top, looked down, panicked, and couldn’t motor plan the descent. His therapist and I talked him through it. The therapist tried to get his friend to give Tate a few directions, but Tate’s friend was too shy. His mom tried to help him engage, but it was clear that it was very difficult. So, the therapist and I got Tate down after about 5 minutes.

Exhausted from that experience, Tate tried to get his friend to chase him. That worked for a bit, and then morphed into a game of hide and seek among the structures.  Tate hid in a slide. His friend hid in a tube. They giggled and chased each other. That interaction gave me a lot of hope. It showed me that Tate has the interest. He has the ability to initiate and interact and play with his peers. He just needs a little push.

Tate asked his friend if he wanted to kick around the soccer ball, with a little prompting from our therapist. Tate handed his friend the ball. His friend said he didn’t want to play soccer because he was wearing flip-flops. Tate stared at his friend for a few moments, processing the information. His friend waited for him to process, which was nice to see. Tate then, on his own, asked if he wanted to go back on the swings. So back they went, swinging to and fro.

The play date wasn’t perfect. It was choppy, heavily prompted, and stressful for both boys. However, it went well enough, and Tate was enjoying himself. He didn’t mind that his friend wasn’t overly chatty yesterday. He just liked that his friend came to the park to play with him. He was very excited about that. I have to put that one in the win column. Tate even asked if he could go to the park to see his friend last night at dinner. (Luckily, we have a play date with a different peer set up for next week!)

Tate had fun. And that’s what is important. And I can breathe easily again…until Monday, when our next play date is scheduled!!

Play date

Tate has a play date today. I’m an anxious mess. He seems ok–as we’ve gone over the social story, and he knows the boy we’re playing with, but still…I am nervous. Our play date is with a boy who is in the regular education classroom. He’s a great kid–very patient, and kind. The teachers recommended that we ask his mom, as he was one of Tate’s champions all year.

His mom is a sweet person, too. She asks questions, and asks about Tate. She talks to him, not at or about him. When I sent an email asking for a play date, she accepted very quickly. I was all confident at first..and as we get closer to the play date, I find that I’m a bit of a mess. I just want it to go smoothly. It doesn’t have to be perfect or flawless, but I just want us all to come out of it on the up-side.

Tate will bee-line for the swings. It’s his “thing”. At first, his friend will go to the swings, but as any other seven year old boy does, he’ll get bored and need to move on. That’s where things break down.

Thankfully, Tate’s therapist is coming with us to help facilitate. She’ll do the painful (to me) task of forcing Tate out of his comfort zone. She’ll encourage him to play a game or go on an apparatus that his friend chooses–it is about give and take.

I worry about the conversation. To say that conversational speech is an area of concern is an understatement–especially with peers. It will be hard for me to watch them converse. Again, Tate’s therapist will help facilitate some back-and-forth between them. She’s excellent with that. And she doesn’t have the “mom” factor going for her…I mean, she cares about Tate and wants what’s best for him, but she obviously doesn’t have the maternal attachment that I do…and thankfully she’ll be able to get Tate to talk without talking for him. (Something I tend to do when I so badly want the conversation to work well…)

I am bringing along the soccer ball. Tate can hold his own, and his friend does love sports, so it might be something they have in common…and will be able to use as an interactive game. So there’s that.

I have all this angst..and we’re only going to be at the park for an hour. 60 minutes. In the scheme of things, this is nothing…but it is everything, too. Tate has made a lot of progress in many areas…and I really hope to see him expand his horizons with peers. If we can navigate this experience well, there is hope for future play dates. And that would be wonderful…for us both.

 

 

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