A family's story

Posts tagged ‘Progress’

Winter Doldrums

Ugh. January is such an ugly, gray bucket of suck. I feel like I’m allowed to say that because my birthday is in January, so I can badmouth this month because I kind of own it. I know, it’s not mine to own, but I pretend sometimes.

Last year, January was an unbelievably difficult time for our family. We had 4 emergency “cold” days that the school district called. We couldn’t get into a groove. Jake was struggling greatly due to a bully. We had the IEP meeting from hell, where they dropped a placement change bomb on us. Back then, it felt like we couldn’t get out of there.

Today, I am experiencing some winter doldrums. It’s been fairly cold here again. Last week the boys missed two days of school due to “extreme cold”. It wasn’t as bad as last year’s cold, but it was bad. We’re trying to get back into our groove after the let down of the holidays and so forth.

I have another birthday coming up. 2 weeks from today, actually. I always get a bit reflective and pensive around this time. What did I do with my life in the past year? What can I do better? How do I find my happy place? How do I stop losing my cool with the antics of three boys? How the hell am I already pushing 40?! When did that happen? I swear, there is a decade or so of my life that is floating around in the ether.

Instead of wallowing, I forced myself to drudge through the fog and the doldrums. As I exercised and ran a few errands, I began to sing and hum. It helped make me a bit more cheery. I came to a realization. I am in a better place than I was a year ago. We are in a better place than we were a year ago. I may have lost and gained the same 7 pounds all year (and now I need to lose them again), but I am healthier. I exercise more. I am making more real food. We have purged a bit of the stuff we have amassed in our 14+ years of marriage. We are supporting the boys and getting them through some of the rough patches. THEY are doing an exemplary job of using their tools and making them work for themselves in difficult situations. We aren’t letting the bastards keep us down!!!

And to top it off, in 10 days we are going to be in the “Happiest Place on Earth”. That is enough to pull anyone out of the winter doldrums. So, as I sit here and look outside at the gray skies and the snow-covered ground, and shiver as I sip on my green tea (a New Year’s Resolution….drink more healthy stuff!), and pull my sweater more tightly around my not-so-svelte middle, I know that in 10 short days I’ll be in the land of sun, fun, and all things Mickey!

Be gone, doldrums….

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!!

We’ve Come a Long Way

Hubz leaves for a business trip to China on Sunday. I’ll be on my own with the three boys for two full weeks, including a full weekend without any co-parent around. Gaaah!!! However, as I think about where we are today, versus where we were three years ago when he last had to do this craptastic trip, I count my lucky stars. We have come a LONG way, baby!!

Three years ago I was still grappling with grief. My mom had died just a month prior to his trip. I was an emotional mess, and I was trying to hold it all together. I’d be fine one minute and crying about not being able to call my mom the other. It was emotionally tough. Throw in the fact that I had a 16-month old who was still nursing twice a day, a first grader who was up for re-evaluation of his IEP (and was going to be getting more services), and a 4-year old who was autistic but not yet diagnosed, and yeah, I was a disaster. To be honest, I do not remember those two weeks. They were a blur. A complete blur. 

Today, I am in a good place. Thanks to counseling and time, my grief has dissipated. I miss my mom, but it doesn’t rule my life. I am able to juggle the three kids..and their growing independence has allowed me to find my happy more and more. Also, because they are more independent, I don’t have SO DAMN MANY demands on me and my time. I have 2 and a half hours every day where I only have to answer to myself. And that feels good.

Three years ago, Jake was a first grader. A first grader who was a little lost. He had just lost his beloved Grandma. He had anxiety about losing his parents, especially me. He was reading significantly below grade level. He couldn’t get math. He stumbled around the classroom not sure of what to do. He struggled to attend and to have a conversation. He was shut down–a lot. He escaped by watching tv. And living in his tv world. And by looking at pictures in books..but not being able to read the words.

Today, Jake is in fourth grade. He has more self-confidence. He has coping skills to help him when he’s overwhelmed. Or scared. Or frustrated. He knows the school routine. He is reading *just* shy of grade level. He’s getting help with the math that is still a foreign language to him…but he’s slowly figuring it out. He has friends, and has conversations. He is very happy and has become such a big help at home.

Three years ago Tate was undiagnosed. I was in denial. I kept waiting for something to click and miraculously get him “to level”. I didn’t realize that his behavior was communication. Sometimes I thought he was being naughty. But he wasn’t. He was just so lost. And I was so lost as to how to help him get through all of the clutter. He was highly echolalic. He didn’t play, he stimmed. Constantly. He needed me to help him get dressed. He needed me to help him toilet. He still wasn’t trained at night, either. It was like having a second toddler in the house in many respects. I couldn’t leave him unsupervised for even a few minutes. We were so lost…both of us.

Today is a 180 from where we were back then. He communicates verbally, even if somewhat through echolalia. He advocates for himself. He has conversations. He plays with games and with his brothers. He still stims, but not incessantly. He likes to look at, and sometimes read, books. He LOVES math and numbers. He understands SO MANY MORE situations, explanations, and experiences. He asks questions when he DOESN’T know what’s going on. He gets dressed (with many prompts) on his own. He uses the bathroom independently. THANKS BE TO GOD. I know more how to help him and guide him. I have picked up on his behavior cues. I have gotten my masters in Tate-ology. It’s a never-ending study, but I learn more and more each day.

Three years ago, Cole was almost 16 months old. He was toddling and running all over the place. He was pointing to everything. He was INTO everything. No cabinet or cupboard was safe. He was starting to use words. It was fantastic..but he couldn’t verbally communicate much, yet. He was in diapers..and very dependent upon me for all of his major needs. He was my baby…in every sense of the word. He was amazingly patient as I dealt with his brothers’ needs, but he REALLY needed me. I had to plan activities, put out toys, pick up toys, pick up his messes, change his diapers, change his clothes, feed him, etc. It was WORK.

Today, Cole is a very self-sufficient four year old. He is, as I like to say, 4-going-on-10. He chooses his toys, and puts them away after some prompting from me. He keeps himself occupied for half hours at a time. He “reads” books. He can get himself a snack from the pantry. He can toilet himself. He can dress himself for the most part. He is a chatterbox. Quite literally, he never shuts his mouth..and I’m ok with that (mostly). He will sit through a tv show and play with his toys. He brushes his teeth. He is such a joy.

So, as I steel myself for the next two weeks without Hubz around, I am breathing easier. I’m less anxious. I know we can do this. I am not a puddle. If we made it through the two weeks back then, we most certainly can do it now that we are all in such a better place. Oh, yeah, we have come a long way.

Little Things…(that we all know aren’t so little)

Over the past few weeks, mostly while I didn’t have time to blog because I was busy reffing my children, there were several little things that went on in our day-to-day that stood out as, well, not so little.

I think it is important to capture them, especially for those times when it feels like we’re stuck and struggling.

1. Tate is trying to engage people outside of his immediate family circle. We had a play date with a few of his classmates a little while back. When the group asked him to come play tag with them, he abdicated his swing and joined them! He then asked them to follow him onto the tennis court to play chase. Also? We were at lunch the other day, and he said hi to two boys about his age. We didn’t know the boys, but the fact that Tate felt comfortable enough to engage them made me want to cry tears of joy. Cole does stuff like that all of the time. It was heartwarming. Oh, and at the school’s family fun day last Saturday, Tate asked a friend of his to join him in the bouncy house. He also asked his teacher, who politely declined. I was grinning from ear to ear.

2. Jake has been doing a tremendous job with telling us how he is feeling. While it crushed my mommy heart yesterday to hear that I was embarrassing him with my paparazzi ways at school, it was also a “YES!!” moment. He told me it was bothering him, and he expressed it so age-appropriately. 

3. Yesterday, Tate’s bus was running significantly late. We made the call to drive him to school. He didn’t like that. His routine includes a bus ride to the school. This morning, he asked a couple of times if he was taking the bus. I reassured him that he was. He said, “Oh good. I like to take the bus to school. You drive Jake instead.” And with that statement, his anxiety decreased, and he went about the rest of the morning.

4. Cole has decided that streaking pants-less around the house is not what big boys do. He has started to pull up his pants and underwear after using the facilities–most of the time. I love not having to chase him around!

5. After some regression with bathroom routines in late July/August, Tate has gotten back on track. He is back to being mostly independent. He’s even washing his own hair in the tub (supervised, of course). 

6. Jake, concerned about being stinky, has started to use deodorant. He has incorporated it into his morning routine. I’m grateful that I have a boy who is worried about being stinky. I’ve heard loads of comments to the contrary about boys!

7. Tate has willingly started to eat bananas and grapes again. He cut those from his diet about 3 years ago. I’m glad that they are acceptable again! 

8. I took all 3 boys for back-to-school haircuts–by myself. There were no tears, no fights, and no struggles. Each boy got a decent haircut and sat for the entire thing. Doing my happy dance!! (Also, if you had told me that I could accomplish this feat 2 years ago, I would have laughed at you maniacally.)

9. Tate was up in the middle of the night. He was whining when I found him in the hallway. When I asked what had happened, he stopped, looked at me and said, “Mom, I just can’t fall asleep. I want to sleep.” I told him he could lay in our bed. He did, and asked me to rub his head. He dozed off within 5 minutes.

10. We participated in a bowling event with Tate’s special ed religious education group. It was loud. It was chaotic. There were familiar faces who weren’t in their predicted location (obviously we were at a bowling alley and  not at the ministry center). And Tate was able to stay for an hour and 45 minutes. He played a game and a half of bowling. He even threw the ball on his own. He celebrated when he got pins down, and celebrated when his brothers did, as well. When an older boy wanted to give Nate a hug, and Nate wasn’t wanting one, he said, “No thank you”. It.was.awesome!

Emerging Skills

One phrase that I have grown accustomed to hearing at IEP meetings, teacher conferences, and even doctor appointments, is “emerging skills”. Often, I find myself looking for these “emerging skills” in all three of my boys’ lives. 

Right now, Jake’s emerging skills have to do a lot with conversation. He is learning to listen, wait, and respond. He’s learning, and starting to make much headway with, speaking in turn and appropriately interrupting. (“Excuse  me” is used..a lot.) I am gaining such an interesting insight into my oldest’s mind with this new skill. And I am really enjoying the boy he’s growing up to be.

Cole is recognizing his letters and numbers. He’s trying to write more letters. He’s building complex creations out of Lego blocks. He’s doing jigsaw puzzles. He’s also learning how to share. That is a TOUGH skill for him. But it is emerging. I still need to prompt a lot, but he’s getting better with each skill independently.

Tate is learning how to self-advocate right now. For a child who struggles with expressive language, self-advocacy can be difficult. He is building the experience, finding the right words, and is trying to apply them appropriately. Learning this skill is tough for him…but he’s really starting to emerge and come into his own.

For instance, we had Cole’s birthday party this Saturday. About 20 minutes before the party started, Tate started to squeak and squeal…his nervous sounds. He then started to walk up and down our stairs. I asked if he was ok. “Mmm-hmm.” I asked if he was nervous. “Yes, I am.” I asked if the stairs made him feel better. “Yes. Shh, Mom. I’m busy.” I let him be. He clearly needed that time on the stairs to organize himself and work out the anxiety. He also needed me to leave him alone, so I did.

During the party, Tate consumed the equivalent of his body weight in Cheetos. Well, I’m guessing. Unfortunately, Tate and Cheetos have a sordid past. He loves them. His digestive system does not. At 12:22 a.m. (yes, I do remember the time), I awoke to a wailing child. As I sorted out in my mind which child it was, I heard, “HELP ME!!”. I flew downstairs. (We had allowed Tate & Jake to “camp out” in the basement that night after the party.) He was covered in puke. Hubz came down shortly after. I had him sit with Tate. I went down and surveyed the damage. (I am not going into detail…but let’s just say it was reminiscent of the scene from The Exorcist.)

I scrubbed as Jake snored away, and Tate told Hubz he felt better and wanted to go to sleep. Hubz cleaned him up and put him in our room, where he scripted until I came back up, and then promptly dozed off, eventually shoving me out of the bed. The nerve!!!

Last night, Tate struggled to settle back down to sleep. We always have trouble on Sunday nights. The transition from weekend to weekday is a tough one for Tate. We haven’t figured out how to help him through this one yet…but I know eventually we will.

As Hubz sat in his room with him, Tate told him that he was tired of being tired..and just wanted to spend time with Hubz. Hubz sat in the room for an hour, spending time with Tate. Tate eventually went to bed once Hubz and I settled in for the night. 

So, these emerging skills are being practiced more and more around our house..and I am enjoying all three of them as they explore and figure out what works best for them.

Piece of Cake

So, I omitted one aspect of Father’s Day from my “Moments” post. It was a moment…but a not-so-little one.

This past Mother’s Day I really wanted an ice cream cake from Dairy Queen. It had always kind of been a tradition with my mom. It was our “thing”. Now that she’s no longer here, Hubz has been pretty good about getting me that ice cream cake every year. He’s a good guy…that Hubz. This year, though, we had Hubz’s entire family over, and my mother-in-law offered to bring dessert. She wanted to make a cake for my sister-in-law’s birthday/Mother’s Day. I was happy to have her bake–she’s phenomenal at it. Her cake was exquisite, don’t get me wrong, but it wasn’t exactly what I wanted. Or, well, needed.

On Sunday, I decided to get Hubz a Dairy Queen cake in honor of Father’s Day. I totally cop to the fact that this was much more for me than for him, but seriously, who does NOT LIKE DQ cake?! The ice cream? The fudge? The chocolate crunchies in the middle? It is, quite literally, as close to a slice of heaven as I’m gonna get.

When I brought it home, the boys’ eyes all shone with delight. They were super excited about our cake. Cole immediately figured it was for his birthday. Because, when you’re just-about-four-years-old, EVERYTHING is about your birthday. And it’s his birthday month. Jake and Tate ran up to me and took a long look. Jake read the phrase, “Happy Father’s Day”, and in his know-it-all tone, let Cole know that it was “For Dad, duh.” Tate saw the man mowing the lawn on the cake and declared that it was Daddy. Hubz cleared a spot in the deep freeze, and we counted the moments until cake time.

Hubz had requested chicken parm for his Father’s Day meal. We had to eat relatively early, as he had to catch a flight for his business trip. I got the food prepared, and we sat down to eat. Well, most of us, except for Tate. He kept saying he wasn’t hungry..and he was gonna be sick…which is a total script. *sigh* We let him roam–free range style–as we ate our dinner. Cole wouldn’t sit at the table either, preferring to do run-by bites of his pasta and chicken. There was too large of an opportunity to tattle on Tate to sit still and talk with us. So, Hubz, Jake and I had a nice conversation about the week, and what we were all going to be doing.

Once we were done eating, I started to clear the table. Jake was helping. Tate asked about the cake. He wanted to know when we’d be eating it. He started to squeak with anticipation. I told him that we would do that once everything was cleaned up. He nodded, and skipped away–flapping his hands ever-so-softly as he went down the hall.

Hubz grabbed the cake from the freezer. He set it on the counter to warm a bit, so that we wouldn’t have to chisel pieces off. Tate swooped in with a finger and got a big dab of frosting. “Mmm–de-wishous”. Jake helped get some forks out, and I grabbed the plates. Hubz started to cut slices of cake for the 5 of us.

“WAIT!!!”, shouted Tate. “We have to sing, “Happy Birthday!” Jake, ever the big brother, chimed in, “Tay-ate. It’s FATHER’S Day. NOT BIRTHDAY. Duh.” I asked Jake to check the attitude at the door. He muttered an apology, and then Hubz cut and distributed the cake. We all sat down to enjoy. As we started to take our bites of cake, Tate demanded that we all stop. He needed us to sing.

So, I started to sing “Happy Father’s Day to You” to Hubz. The boys all joined in. Tate sang with his entire body. His arms swung in the air. He twisted his torso to-and-fro. His head tilted from side-to-side. He was so into it. As we finished the song, Tate clapped and shouted “Yay!!!” Then he ate his cake…but not after swiping a little more frosting from Hubz’s slice.

As Tate did all of this, I couldn’t help but think back to his neuropsychological evaluation in March 2011. How my son, my precious fun-loving-son, cringed when the doctor sang “Happy Birthday”. How he cowered back into his chair, covering his ears. How when she prompted him to celebrate, he chose to grab the “cake server” and stim with it. How when she prompted him to say “Happy Birthday”, he laughed and giggled and started asking about grilled cheese from his favorite take-out place because it was all just too darn much for him.

I thought back to prior celebrations. How we’d have to sit in the other room, I’d cover his ears and hold him in a bear hug while others sang and cheered and celebrated with cake. How he’d whine and plead and beg for it to be done. How he just couldn’t handle having cake at any time because, God-forbid, there may be singing involved…and it was just too much.

So, even as I fret over his slight regression with speech/language lately, or his peer-to-peer social skills, or his proficiency with Reading Level B (and most First Graders are on J or whatever-the-frick-it-is), I can look at this moment. I can see the progress. I can beam with pride that my son, the one who never could be a part of celebrations that included cake in the past, could now LEAD THE FAMILY IN SONG to celebrate his daddy.

He made it look like a piece of cake…and well, I know that it has been anything but to get to this point. He works hard, that Tater Tot. And his hard work is paying off…in spades.

Moments

This weekend we had some good times. We had a few rough times, too…but there were definitely some moments that I want to hold onto for just *a little* while longer.

-Like when Tate caught my eye on Saturday morning when I came downstairs to get the coffee going. His arms were outstretched, his smile wide, and his eyes glistening. “MOM-EEE!” Oh, I want to hold onto that.

-Or when Cole crawled into my lap when he came downstairs that day. He snuggled into my chest and twisted my hair between his fingers. He let me breathe him in…I inhaled every bit of his little boy sweetness that I could. I know our time like this is fleeting. Sooner than I would like, my baby is going to be too big, too heavy, too cool, to sit on my lap like that.

-Jake turned off the television–unprompted–so he could come talk to me. I almost fell over. While we talked, Jake sketched some creations into his drawing pad. He created creatures that were breathtaking and amusing. They were majestic and minute. They were so him. The best part was how he’d excitedly explain what each one was–and what parts of real animals he used to create them. (Note to self: let’s work on fractions with the tutor…one creation was, in Jake’s words, “1/2 rhino, 1/2 bearded lizard, 1/2 monkey, and 1/2 giraffe”. I told him they were 1/4’s…he looked at me like *I* was the one with 4 heads…)

-Tate initiated pretend play. It took until age 6, but my kiddo is finally grasping the concept of pretend play. Saturday morning we were playing drive-thru window (I don’t know WHERE he got that concept from….*whistles*). I asked for a sandwich. He was only willing to sell me a stinky foot sandwich. When I pretended to be completely grossed out, he squealed with laughter, and then offered me a butt sandwich. When I said no to that, he said he could give me a knee sandwich, but that was all they had. I obliged, and gobbled down that knee sandwich…as soon as I gave him my money–which is all a part of the play. (Oh, and by money, I mean I have to give him my credit card, and he asks if I want a receipt…again, no idea where he comes up with these things!! wink, wink)

-Jake was trying to convince me to get him a pet otter. I had to decline. He then asked if he could get a pet manatee or dugong (a critter similar to a manatee, but with a slightly different tail…). I said no..and he retorted with, “right, we don’t have a pool”. I nodded and I said I didn’t want to clean up their poop, either. (They are called “the elephant of the seas”, people, so, heck no! Oh, and the whole fact that our climate is definitely NOT their natural habitat.) This evolved into a bickerment about whether animals poop. At 5:30 in the morning. I wasn’t convincing him….so we looked it up online. I won that one. He even admitted I was right. (Hence, I have to document this because we are *this close* to the time in our mother-son relationship where I will know ABSO-FREAKIN-LUTELY NOTHING. That’s gonna be…not awesome.)

-The 3 boys helped Hubz with yard work yesterday while I was at the store. Like actually pulled weeds and picked up trimmings, and the like. I love that they are able to spend time with Hubz…and that he can teach them some very practical home-keeping tips in the process.

-I took the boys for a walk around the block last night. Well, they rode bikes while I was forced to run pathetically after them. Tate shrieked with delight as he felt the wind blast him in the face, rush through his hair, and felt the vibration of the ground beneath him. That joy. That unbridled joy. I love that something so simple makes him so very happy.

-Jake used the word, “wiener” to refer to his, um, yeah….. I was amused, but had to pretend to be appalled. (I always worry about him being immature and unable to relate to peers. That right there shows me he “gets” a lot of the convo that is going on…much to my delight and chagrin. I asked him to try to not use that one in front of his brothers…I really don’t need Tate scripting that. It will happen in its own time, and I don’t need him to expedite that.

-The three boys sat in the family room and watched SpongeBob together last night. As they watched it, they actually TALKED ABOUT THE SHOW together. Even Tate. And then they simultaneously burst into laughter because there was a potty joke. They shared their gummy bears, gummy worms, and sour patch watermelon candy together…and it was nice to see something just so….typical.

So, lots of little moments. Moments that, together, add up to some great memories…and help me get past the not-so-awesome moments like bickering, social difficulties, frustrations, attention issues, and so forth.

Some Kind of Wonderful

This weekend our family saw some little victories. They were the “little things” that we all talk about…nothing super huge in the scope of life, but thanks to the life we lead, well, little things are definitely worth celebrating.

On Friday, Tate had his 7-year-old (!!) well-check visit. Our doctor is a great pediatrician, but he is the first to admit he is not an autism expert. He asked a few questions about Tate, and when I told him that Tate could answer them, he turned to Tate and asked Tate..and Tate answered. It was a bit of a mumble, but the doctor and I took it. It’s never too early to start self-advocating!!

That evening, Tate had a birthday party to attend. It was his friend Geo. The last time we had gone to Geo’s birthday party was 2 years ago–right after the official autism diagnosis. We left the party right before the cake, as just the thought of singing “Happy Birthday” was freaking Tate out–big time. This year?! Tate managed to maintain his sanity and stay regulated during a 2-hour party at Chuck-E-Cheese. He climbed, played a few games, danced to the animatronic Chuck-E, and shock of shocks, he high-fived the “real” Chuck-E when he came to our table. (Insert jawdrop) 

Tate sang and danced while we sang “Happy Birthday” to Geo. He had a blast. He ate, he played, and at the end of the party, he said thank you to Geo’s mom. It was perfect. The victory was not lost on Geo’s mom, who asked him for a high-five..and asked if he would like a play date soon. Tate said yes!

On Saturday we had soccer. Tate was a bit resistant at first, but the second his buddy showed up, Tate was out on the soccer field, kicking the ball around like a champ. He just was…happy. 

Later in the day we had a bar-b-que with our neighbors. We have six kids between us, ages  9.5 to 3. It was chaotic and loud..but fun. Tate held his own, pumping on a swing on the play set, jumping on the trampoline, and asking for a turn in a play house. It was going so well. He didn’t even lose his shtuff when the neighbor’s son tried to antagonize him. He just moved along…and found something else to do. Yes, he was slightly removed from the group, but he did what he needed to do to stay in control. He also let me know that he was tired and wanted to go to bed, so we let him fall asleep on the neighbor’s couch while the other kids watched a movie. 

On Sunday we played in the yard for a bit, and then we made our way to Jake’s first lacrosse game of the season. Jake doesn’t mind practices, but games really give him some anxiety. We were happy to see that he did so well getting his uniform on, and put on his gear  mostly by himself. Last year he couldn’t manage that. 

Once he was with teammates on the field, he got a ball and started to practice with one of his teammates. He also kept up much more on the field, and while he avoided any of the major action, he was more “with it”. He did a great job, and we were proud of him.

While Jake was playing his game, I had the younger two boys on the playground. Cole was like the mayor. He told everyone his name, played with a few different groups, and pretty much walked (and ran!) around like he owned the place. I wasn’t so worried about him..but I did have to kiss his head when he bumped it on the slide.

Tate did amazingly well. He shared the swings with other children..and navigated a few social interactions pretty well. When he was getting anxious about the swing and whether he would ever get it back, he came and asked me to play with my phone. He was able to regulate by watching a video of spinning ceiling fans and a 3-minute segment of a Doc McStuffins episode. He stayed regulated and played quite well. 

Last night Tate’s allergies were flaring. It was obvious his head hurt, and his nose kept running incessantly. Around midnight I awoke to the boys’ bathroom light on, and the toilet lid slamming up. I went to check on the culprit and found Tate crouched there. He looked up at me and croaked, “My tummy is sick.” He managed to get his mess in the actual toilet. Upon examination of his bed, he had gotten sick there, too, when he coughed from his allergies…and I stripped it and threw it all in the tub to be dealt with in the morning.

He went and laid down on the floor next to my and Hubz’s bed. I laid next to him. He did a soliloquy of “One Fish, Two Fish, Red Fish, Blue Fish”…twice. But after an hour, he asked to go lay on the floor of his bedroom…and he fell asleep until 6 am. This was nothing major, but it was.

So, this weekend was nothing major…and some kind of wonderful as we got to bask in the progress that our kids are making each and every day. It felt good.

Then and Now

THEN

In Feburary, 2011, our nephew made his First Communion. We dressed the boys in their “church” clothes. I put Tate in a sweater and khaki pants. He kept whining that they were too “squicky”, which was his word for uncomfortable and unpleasant. I told him he had to wear them. We rushed into the car, and headed to the church. In hindsight, we did not prepare the boys well for this at all. We didn’t talk about it. We didn’t explain that the church was not our church. We didn’t talk about going to dinner afterwards. Not good.

We did not have an autism diagnosis yet, but Hubz and I both knew…and the family knew, that Tate struggled. Oh, did he struggle. Tate started to use quite a bit of echolalia as we headed into the church. “Mix, pix, squix. Mix, pix, squix,” he chanted over and over again. I tried my best to stay calm and soothe him with my voice. Hubz and I sandwiched Tate, figuring that we’d keep him from fleeing the situation, as well as from disturbing other people. He started to flap a bit before the service started. I could feel the stares burning into the back of my head. I tried to ignore them, but I felt every one.

We barely made it through the beginning of the service when Tate started to howl. Literally, howl. We had to remove him. I handed my mother-in-law Cole (who was barely 20 months old) and tried to quickly get Tate out of the room. He laid down in the middle of the aisle–completely dead-weight. Still howling. Hubz helped me get him vertical and we got him outside. I encouraged Hubz to go back in while I handled Tate.

Two years ago we had a child who was completely dysregulated and unable to communicate effectively. I knew it was too much. From the people, to the sounds, to the action going on around him. He was flailing about. He wanted to be held. My 50-pound-almost-five-year-old wanted me to hold him like he was a toddler. I tried. We also tried walking, rocking, deep pressure hugs, and hand squeezes. I was damp with sweat. The tendrils of hair that escaped my attempt at pulling my hair back had plastered themselves to my cheeks. I was flushed. My eyes were brimming with tears.

Nothing I tried worked to calm Tate, as he was too far into a state of dysregulation. We never made it back into the church to worship…we just sat outside the doors in the main area. Or well, we ran, jumped, vocally stimmed, and tried to ignore the stares. Oh, the stares. I wanted to crawl into my cowl neck sweater and never emerge.

After the service was over, all of the families congregated in the meeting space for a potluck dinner. We tried. We found food that we thought the boys would eat. And because he was so worked up, Tate overstuffed his mouth with chicken nuggets, didn’t chew properly, gagged and threw up all over Hubz. (That was pretty common back in those days…) Our family helped with the other two boys, but Tate was done. D-O-N-E, done. He was whining, tears were streaming, and he was hitting and sitting in wet clothes. It was pretty much our low point. Hubz made a comment about being glad that we had a doctor appointment coming up. I sighed and let the tears drip down my cheeks as we sat in the area outside the meeting space while Tate roamed and crashed into walls to try to regulate.

NOW

This past weekend, our niece made her First Communion at the same church. We talked to the boys about it for a few days beforehand, mentioning each day what we were going to be doing on Saturday night. We talked about how they had been there before, and how it was their cousins’ church, not our church that we usually attend. We talked about First Communion. We talked about all of the people who would be there. We discussed the “big dinner” afterwards, and how it would be “pot-luck”, which means lots of choices, but that we’d help them pick food that they liked.

We dressed the boys in their “church” clothes. We let Tate roll the sleeves of his button down shirt, and wear his favorite socks–even if they didn’t quite match. We let him bring his stimmy stick and stocked my purse with fruit snacks. We left with plenty of time, and took our time getting into the van. As we pulled up to the church, Jake remarked that he remembered being there before. My boys definitely have good memories. We decided to go into the church.

Tate sat at the edge of the pew. We have discovered that he has much less anxiety when he can “get out” and not feel trapped. He asked for a fruit snack. I obliged. He started making comments about the inside of the church. His volume was a little high, but not too bad. The music started, and so did the service. Tate was absorbing the stimuli around him. He was quiet, but a little fidgety. He asked for another fruit snack. A toddler started to shriek. Tate started to vocally stim. He then looked at me and asked to leave. We walked out quietly–together. I noticed an adult giving us “the stare” (you know what I mean). I met his gaze and arched my eyebrows, he quickly darted his eyes away.

We walked through the hallway of the church, down to a worship area where there must be music on Sundays during regular service times. He found fans on the ceilings. He was content to look at the fans in the shadows and count them. He was content to walk and count his steps. He was content to squeeze my hand and walk back and forth, back and forth. I asked if he wanted to go back into the church. He did not. We continued our walk to the music room to  look at fans, and then back to the church to see what was going on during the service. Tate was quiet…well, quiet for Tate. He was not disturbing anyone. He was regulated.

Eventually Cole needed a break from the service, too. Hubz came out with him, and took a shift with the boys. They were a little more squirrely with Hubz, but they weren’t disturbing the service, so that is good. Tate came back into the main part of the church for the Communion. He walked up to the altar with the family, eager to see what it was all about. He started to get anxious, though, as our niece and our family were one of the last to receive Communion. Tate started to make his vocal stims again. He wanted to climb up my body. He started to whine. He asked to leave. So, he and I left. We didn’t receive Communion, but did leave peacefully.

Again, he and I made our way to the music room with fans. He counted them. We counted them. We skipped. We counted some more. We did some word games–which he asked me to stop when he was done. We made our way back to the church area. The shrieking toddler was outside of the main church now, still shrieking. Tate asked to walk away. So we did.

While we waited for everyone to gather before going into the church gathering area for the dinner, Tate played with my phone. He took pictures of Jake, Cole, and his cousins. He took pictures of the shrieking toddler throwing a tantrum on the floor. I’m totally serious. He walked with the family into the gathering space. He continued to play on the phone, alternating between Doc McStuffins videos and fan videos. He eagerly showed Grandma all of his favorites. She played along, remarking about how marvelous they all were. Tate was too dysregulated to eat, but he told us that. “My tummy is too squickily.” He did ask for some “melonade” (which is lemonade), and we made sure he had some. He sat, quietly, interacting when he was talked to, but then returning to his videos.

Even as we are struggling through a medication change, and all of the behaviors and anxieties that come with it, Tate is showing how far he has come in just 24 months. It is nothing short of amazing. That little boy who used to be so trapped and alone has cracked that shell and is starting to come out. He can communicate more effectively when given the chance. He is able to advocate for himself, not always, but in little, yet big, ways. And we’re seeing how much he’s grown.

Looking back, even when things seemed so hopeless, we latched onto that last shred of hope that there was better coming around the bend…and it did come. Not immediately, but eventually. I know that this will happen again…it will…and that’s what gets me through…

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