A family's story

Welcome, Eight!!

Tate is eight! On this day in 2006 I went to a routine doctor’s appointment. Little did I know that I was in full-blown labor. Taters came into this world 3 weeks and 1 day early. He has always been on his own timeline…and he has taught me so much about trusting my instincts and trying not to compare us with everyone else.

Tate is an amazingly strong child. He endures struggles and difficulties with aplomb and charm. He keeps plugging along, even when it isn’t easy. He really is an inspiration. He also has such a zest for life and is so passionate about so many things. I wish we all could laugh as heartily as he does and dance and enjoy music like we didn’t care who was watching like he does. He marches to the beat of his own drum, and it is going to serve him well in this world.

Happy Birthday, my sweet, sweet boy. I love you to the moon and back and then some….

Now I shall inundate you with photos of his 8 years….he’s pretty darn adorable, if I do say so myself…and he exudes joy. Just look….

A snowman with Jake

My water obsession in early 2010

watching tv 2008

Watching TV in a box…to define my space and help me feel secure in February 2008

our boys

Welcome home, Cole!!!

On the day that I was born…I tried to block out the bright lights from my mom’s room…

2nd Birthday with monkey quilt from Grandma

Doing a little sensory seeking on my 1st birthday

Seven was a great year…with Doc McStuffins

Playdoh on my 6th birthday

I’m gonna rock you like a hurricane

Playing with crayons and markers in 2008

My 2nd birthday was a ton of fun

I'm three!

Turning three was a happy day

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When I used to eat varied foods…in 2007

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Decorating Easter cookies on my 5th birthday

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A sense of wonder

bros

Jake and Tate

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Do I need to turn this car around?

Napping on the fly…

4th bday nate

Tate and me on his birthday

4 years old

Opening presents on my 4th birthday

Heading to 3 year old Early Childhood Preschool

Yesterday winter came back with a vengeance. We had snow. SNOW. I know it’s April. I know we live in the Midwest. However, after a weekend in which we got to experience our first day above 70 degrees since early October, it seemed like such a travesty that we had to suffer through SNOW again. *sigh*

As it snowed, quite steadily, throughout the late afternoon and evening, Tate let us know his feelings about said weather. “Aw, Peanut Butter and Jelly Sandwiches”. He said this numerous times. He also said that the weather was “ridiculous”. He was NOT happy. I think it was mostly because he wants to go outside and play with our hose and water…and, well, when it’s 31 degrees and snowing, that’s just NOT going to happen. He demands that spring return.

This morning I had to scrape my van. For the duration of winter, I had been parking the van in the garage, because in November my van doors froze shut for a day. After a hailstorm this weekend that dinged up Hubz’s car, I am parking my beat-up mom-mobile out there. The downside to parking outside in a freak snow shower? My electrical sliding doors were frozen shut–again. To quote Tate, “Aw, Peanut Butter and Jelly Sandwiches”. Ugh. Luckily, the sun was shining this morning and the passenger side of my van was thawed enough that we could get into the van via those doors. Doubly lucky, those are the doors that the kids use to exit the car in the carpool line at school. I didn’t have enough energy this morning to be “that” mom….

It’s funny how the things our kids say become part of our family lexicon. Lately, when I get frustrated or peeved, I find myself uttering, “Aw, Peanut Butter and Jelly!”. I guess that is better than “dammit” or “S#!%” or the big ‘ol F— word. Clearly, in his social groups at school he is being taught substitute phrases for expletives. I’ll take it…and it sounds a whole lot better when it becomes echolalic . A second grader muttering “peanut butter and jelly sandwiches” over and over again is much more appealing, and a lot less attention getting than, “Oh, s#!%!”.

Tate’s Big Day

Last fall I wrote a post regarding my struggle with the fact that Tate wouldn’t make his First Communion with his class. I was a little sad, and a little disappointed. I spoke way too soon.

This year we have seen tremendous growth. Tate’s language skills have really blossomed. He is much more involved in the actions and surroundings around him. He has developed some astounding coping skills. We have our bad days, weeks, and stretches, as does anyone, but overall, our kiddo has made some impressive strides. I dare say, he has really come into his own.

Along with all of this glorious progress, we have noticed that during Mass, Tate is much more aware of the routine. He follows along, and knows when to sit, stand and kneel. Whether he joins us all is another thing, but you’d better believe he tells me when it’s time to do each action. He knows when we sing. He knows when we pray. He knows when we make the sign of the cross and say “Amen”. He also knows when he needs a break from all of the action, which is so huge, that I really don’t need to say it. He will say, “I need to go to the playroom” or “I need a drink”. If we ask him if he wants to go for a walk, he will let us know if he does. Again, super-duper huge.

He is also an active participant in our church’s special religious development class. (SPRED) In that class, which meets every other week, they meet with a one-on-one catechist (someone who leads them in our faith). They read a passage from the Bible. They talk about a good thing from their week. They do special activities. They sing. They dance. They share a meal. It is fantastic.

About a month and a half ago, I asked his catechist about a timeframe for Tate’s First Communion. I know that the SPRED children often don’t follow the same timeline as the “typical” classes do. I mentioned how Tate is making a rough sign of the cross, how he follows along in Mass, how he keeps asking if he’ll be making his First Communion because he’s going to be 8. His catechist called the next day, saying that between my report of his progress in his faith at home, and what growth they’ve seen in SPRED, that they felt he was ready for First Communion.

I was ecstatic. Again, Tate has proved that he should not be discounted. That he should not be marginalized. He is right there with his peer-age group. In fact, he made his First Communion before other 2nd graders!!!  He was so proud. The smile on his face when we told him that he was going to make his First Communion, oh, how I wish I could capture it on film. It lit up his whole face. Even his eyes and ears and nose were smiling. For him, for us, it was magical.

This past Sunday was his big day. We had practiced how he should hold his hands. We had practiced what he should say when the priest said, “The body of Christ.” We had practiced how he should make the sign of the cross. He was as ready as he could be.

Sunday morning we had a special breakfast of cinnamon rolls and lemonade. Well, at least the boys did. They all showered and put on their Easter best. Tate willingly put on a collared, button-up shirt and a tie. A TIE!! He wore pants that had a button and a zipper. He wore dress shoes. He knew it was “only for an hour”, and then he could wear his comfy clothes. He also knew his clothes were special.

We got to church and our entire family was there to celebrate with him. His godparents were there. His grandparents. His cousins. His aunts and uncles. Everyone was ready to support Tate in his growth in his faith. It was spectacular, and caused this momma to tear up, just a wee bit. He struggled a little with all of the attention. He was a bit anxious, and ripped off his name tag. Once our family was seated, Tate and I went back into the gathering space of the church. We stood with his fellow communicant (another child from his group was making his First Communion, too) and with his catechist. He looked for some sensory input by pressing his chin into my arm. After two squishes, he said he was okay. I told him I was going to go sit in the church, and he said, “Bye, Mommy. See you later.” And that was that.

He walked into church with the rest of his SPRED group. He sat quite well with his catechist during an ENTIRE Mass. It was an hour. And he sat the entire time. Without needing any escapes out to the gathering space. HUGE!!! He danced with his whole body when the SPRED group sang the Responsorial Psalm. He just exuded happiness.

When it was time for his First Communion, they called Hubz and me up to the altar with him. We stood around the altar with Tate, his catechist, and the other boy and his family. Our priest talked about how wonderful it was to see Tate and the other boy grow in their faith. He applauded us and the other parents for continuing to help our children grow in our faith. It was all I could do to not ugly cry up there. I was so proud. My chest was bursting.

Tate took Communion like he’d been doing it for years. He was calm. He wasn’t overly fidgety. I wasn’t chasing him around the altar or worried about him knocking over candles. He was phenomenal. He was ready. So ready. He made his First Communion and calmly went back to his seat with his catechist. Hubz and I were beaming with pride. Our kiddo…the one who has struggled greatly in all things, did it. He not only did it, he did it well.

I couldn’t be more proud of my son. He constantly works and tries and overcomes. He proves to us over and over again how much he is capable of doing. I am blessed to be his mom.

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Tate in his comfy clothes. “You know you live in the Midwest when…” your kiddo puts on shorts when it’s 58 degrees outside.

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Tate’s cake…made by Hubz’s mom. Awesome, right?

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Tate and his grandparents

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Tate and his godparents

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Tate and me

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About as good of a family photo as we’re going to get.

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A dapper Tate…stimming with a plastic knife because, well, why not?

Well Aware

I didn’t post yesterday. Quite honestly, I am not sure what I can say about autism and awareness and acceptance that hasn’t already been said. I mean, with the rate at which children are being diagnosed with autism spectrum disorders, many of us know of and are well aware of autism. It is everywhere.

Our school has a big bulletin board up at the front of the school. In big bold letters it proclaims, “April is Autism Awareness Month”. The school social worker, who has the biggest heart and a very personal connection to autism, put it up. I like that there’s something up there. I noticed several kiddos in the school were wearing blue yesterday. A few had various “Team _________” shirts on to support loved ones or family friends. So, I do think that the school community is aware.

Now that everyone is aware of autism, I think we need to work on letting those with autism advocate for themselves. I am obviously still advocating for Tate, and will always do what is needed to get him what he needs to succeed. However, I am trying not to speak for him and do everything for him. I’m letting him take the lead a bit more.

At home, lately, when Jake or Cole ask me why Tate is doing something that is seemingly odd, or maybe even annoying to his brothers, I have stopped answering for him. Instead, I ask them to ask Tate. Tate knows why he does things better than I do. For instance, yesterday he was whining in the van. We call it “perma-whine”. It usually happens when he’s worn out and/or hungry. Cole kept asking me why Tate was “crying like that”. I told him to ask Tate. So, Cole did. Tate said, “Cole, I hungry. Soooo very hungry.” And we were on our way to Culvers for a take-out treat, so it made perfect sense. He’d been at school all day, did 3 hours of therapy, and then we visited the library. He was plain old starving by the time we got our food!!

Jake had a musical concert a few weeks ago. We sat in the back row, ready to make an escape, if needed. Tate got a little antsy. Then a little whiny, and then a little oppositional. I know he was trying to find his calm, but it just wasn’t working. Hubz took him out into the hallway at one point, even though Tate said he didn’t want to go. After about 2 minutes, they were back, and Tate was able to watch the musical for a bit. Suddenly, he looked at me and said, “I, I, I need to get out of here. I need to go….I need to go pee.” We quietly left the gym and walked to the bathroom. He used it and came out. He was visibly calmer and more regulated. He just needed to move. So we hung out in the hallway with the toddlers who also needed some sensory breaks. We walked past his classroom. He showed me his locker. We made it back to the gym for the finale of the show. No tears. No shouting. No meltdowns.

This morning we were sitting around waking up and eating breakfast. It was raining outside, and it got a little windy. There was a flash of lightening. Then, obviously, thunder clapped. Tate ran into the kitchen where I was reading the paper. “I’m gonna, gonna….gonna be sick.” It’s a script of his. Often, it means that he’s anxious. He gets, I assume, that fluttery feeling in his tummy. I looked at him, and as we shared a gaze, I told him that he wasn’t going to be sick. I thought he might be anxious…worried…about the thunder. “Yes!” I assured him that he was safe inside. He asked if it was going to rain during the day. Our forecast is for rain on and off throughout the day. I told him as much. “But no thunder, right, Mom?” I explained that there could be thunder, but most likely it was just going to be rain…with maybe a little thunder here and there. I reiterated that he’d be safe in the house, on the bus, and in school. “Okay, Mom. But I sleep with you if there’s thunder tonight.” (Oh, boy…)

So, I guess that this month, since we are both aware and accepting of Tate and his neurology, we’re going to approach this as Autism Advocacy Month. Tate’s language skills have blossomed tremendously lately. Why not let him practice the skills he has worked so hard to gain? Yeah…Autism Advocacy month.  I like the ring of that.

Ramblings

I am fighting the cold that my beautiful boys decided to share with me. We are all sniffle-y, cough-y, and cold-induced fog-y around here. As we prep for our spring break, I have numerous topics rambling through my head. Figured I’d try to get them out here.

1. We have three boys. Three amazingly gifted and talented boys. Ironically, when I tell people that I have three boys, almost everyone jumps to the conclusion, “Oh, you have your hands full.” Well, yes, I do…but don’t we all? We are all busy and trying to balance schedules and trying to find the perfect alignment of boundaries, expectations, and abilities. I usually answer, “Yes, but I’m sure you have a lot going on, too.”

2. Along with the having three boys thing, I am often asked which sports they enjoy. I know it is a gender stereotype. Boys love sports. When we found out Jake was a boy, Hubz was anxious to share his love of football and college basketball and his moderate knowledge of baseball with him. Jake is probably as interested in sports as I am in scuba diving. That is to say, we know they exist, and we’d prefer to not have to do them. Aside from swimming, which Jake finds to be calming and relaxing, he doesn’t have much need for sports. He doesn’t even really like watching them. At first, I was a little upset by this because, well, I love to watch sports. I am not very athletic, so I understand not wanting to play…but not wanting to watch?! What? But, it’s all good. I know he has his own passions and interests, and I try to help him enjoy such things.

3. This leads me to the next thought. I just signed Jake up for a Saturday morning zookeeper class. He is going to L-O-V-E, LOVE it!! He’ll be squeaky and flappy and jumpy and oh-so-engaged. And to see him be happy makes me happy. I am thrilled that we found a program relatively nearby that encourages kids to take an active role in nurturing animals and caring for them. I truly believe that we may have a future zookeeper in our midst. Now he can see what it feels like to be one!!!!

4. Tate is my hero. I know I’ve said it before, but I just had to put it out there again. This kid. Where do I start….he tackles all of his obstacles (even when he’s not feeling well) and finds ways to overcome some of the most frustrating situations. He is like a Goonie. He never says die. He just keeps plugging along. He has frustrations, he has regressions, and he has times when he just wants to do his thing, but knows he has to do homework or go to therapy…and he does it (with minimal grumbling). And, even when things are really, really hard for him and we think he is going to totally fall apart, he totally doesn’t. He pulls it together, uses those ever-growing language skills and tells us that he needs to get away from the overwhelming. Needs to have some squishes to help him feel better. Needs to sleep with us because he is not feeling well. Just amazeballs. He shows up every day, knows that things are not going to be easy, and he STILL has a smile on his face and a giggle waiting in reserves. I need to approach my “hard stuff” like he does.

5. Cole is becoming such a big typical-ish kid!!! In September this child would not tell us what any letters were, would not write his name, would not point out numbers, and he often needed help with getting undressed/dressed, etc. Now? He recognizes and knows the sounds of most of his letters, knows numbers up to 25, can rote count up to 15, is understanding basic addition, and often pretends he’s a superhero and changes his clothes and does his “taa-daa” reveal to show us how he gets changed out of one outfit and into another. He’s doing so well!

6. In the interest of fostering my kiddos’ passions, we are attempting to visit Legoland over Spring Break next week. Our local-ish Legoland isn’t very big, and incredibly over-priced, and I know that I’ll end up paying exorbitant amounts for a set of Legos as we leave through the gift shop, but I also know how much all of my boys (especially Cole) will love it. And to see the enjoyment on their faces will be worth the second mortgage on our house…almost. :)

7. We’ve already received positive feedback about Jake’s use of the iPad at school. Whoo-freakin’-hooo!!! Technology can do wonders…really. When harnessed appropriately, it can help the weakest students find some success. I am so glad that we tried this route. Now he can be just like his classmates…and he’s enjoying grade-level books!! (About animals, but still…he’s loving the reading and using his class time to engage in literature!)

8. Hubz and I are having a date night this Saturday. I am so excited. It’s been months since we last got out sans children. We are going to Cooper’s Hawk for some delicious food and some fantastic wine. We also plan on doing a little shopping for ourselves, and then possibly watching a movie. I’m grateful for Hubz’s parents, who really “get” that we need a break now and then and are willing to take the boys overnight. I also get a full night’s sleep out of this deal. There is no greater gift…I mean, really.

Well, I have more cycling through my head, but I have to jet. I have a barre burn class at our Y to get to…not sure if you’ve ever tried ballet-type exercises to tone your body. I really enjoy it. This instructor is kind of part Pilates/part ballet. I find it relaxing…but my muscles don’t. They hate me the next day…but it does seem to work. So, there’s that. Have a great weekend!!!

Behavior is Communication

Yesterday we had another IEP meeting for Jake. This one was to discuss the findings in the behaviorist’s Functional Behavior Assessment (FBA). She also had a Behavior Improvement Plan (BIP) proposal for him. We also discussed how much more he can rely upon the assistive technology in the classroom to assist in learning and accomplishing his goals. The meeting went fairly well. For the first time in a while, I feel hopeful about the rest of Jake’s 4th grade experience.

Essentially, Jake avoids tasks that are difficult…or that he perceives to be difficult. His preferred method of escape is to engage in a pretend play where he either uses small objects as his characters in his story, or he’ll draw his characters/animals and let them live in this fantasy story that he spins during instructional time. The behavior occurs 100%…yes, 100% of the time during large group instruction in the regular education setting. The problem? While he’s not disruptive to the class, he is disrupting and sabotaging his own learning. He misses the general lesson and explanation and then is lost when it comes time to do an in-class assignment. Case in point, last week he was observed during Social Studies. He engaged in his little play thing during the 20 minute discussion, lecture, only pausing when he was directly called upon by the teacher. Then, they had a worksheet to fill out, and he had no idea how to do it. He broke down in tears and ultimately ended up failing the worksheet. *sigh*

Another issue that was discovered is that he finds silent reading time to be very difficult. The behaviorist thinks it is that it is partially his sensory needs that get in the way, and that he just finds reading too exhausting. So, he’ll go through multiple books, flipping through them to look at pages. He never reads any of the books. (We see this at home at night when we do reading before bed. He just looks at pictures, and never reads the words.) One thing at home that has helped is to have him use his Read2go app on his iPad. With that app, books are read to him and highlight each word as they are read, so he isn’t missing anything or getting tripped up on more difficult words. He is engaged and has enjoyed a few books that way.

So, starting today at school, we sent in his home iPad with the app and his headphones. While we wait for the district to provide him with his own dedicated iPad, we will send his back and forth to home and school. He will be able to actually make productive use of his reading time. Also, he’ll be able to go in the reading corner and read in a sensory-friendly position. At home, he likes to be upside down or dangle his feet over the edge of the chair or bed. But he is reading and getting exposure to literature, so we’ll take it.

On the assistive technology front, the consultant is going to request that Jake gets his own iPad from the district. Then he’ll have access to his books from home on the Read2go app, and he’ll be able to use Paper Port Notes, Learning Ally, and a few other apps to help him with school assignments. A huge benefit is that his textbooks are available on the Learning Ally app, as long as an authorized educator downloads them for him. It would be huge for him to have all of his books available to listen to, rather than just read them on his own. The apps help him track during reading much more successfully than when he does it with his finger.

To address his pretend play during instruction time, we are going to try to have him doodle on some bubble letters. He can color them in, make some designs, scribble, etc, but he will have to have his hands on his desk during the class instruction. He has to engage in the doodling for 5 minute intervals. If he does that without issue, the teacher will increase it incrementally to see how long he can go over the  next few weeks. The behaviorist discussed how doodling (like vines, or letters, or scribbles or flowers) can actually be functional and help any of us attend during a lecture or discussion. Jake’s drawings don’t serve the same purpose, because he enters his own world and taps into that pleasure source where it is comforting and overrides all the “hard” aspects of school. If he can learn to just doodle to help him pay attention during class, it would help. He can draw his pictures and do his little pretend play during his free time.

The upside to this whole process is that we found out how much Jake is capable of doing. He is actually quite smart, and even when he escapes the hard part of learning, he is still achieving B’s and C’s with accommodations and modifications. He has capitalized on these learned behaviors to escape the difficulty of new material and topics. Learning new material is hard. It is challenging. And because he’s been allowed to just quietly go about his merry way for the past 4 years, he has learned that he can avoid the difficulty by quietly engaging in his own world. But that isn’t going to help him learn and be prepared for educational settings as he gets older.

Imagine how much closer to grade-level he’d be if he were more present during the instruction part of the day. Imagine how much more he’d learn if he were able to successfully participate in the class activities and discussions in his general education classroom! Surprisingly, when he’s in his resource room, he is much more on topic and engaged. He is able to be a part of the group discussions and keep up with the instruction. The behaviorist only saw the avoidance behaviors during individual work time, when he should be working on a worksheet or reading a chapter on his own.

Our goal, here, is to get him more engaged in the classroom, and get him more functionally participatory in the setting. If this proves to be too challenging for him, we have our answer that he does belong in a more restricted environment. But, for now, we are going to try to help him learn how to be successful in a regular education setting…which is where Hubz and I, and a few others, think he belongs!

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.

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Gingerheaddad

A redheaded dad writing about parenting, autism and the odd piece of stuff

Grady P Brown - Author

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