Lots of thoughts

My day started out with a bang. Sumner had a really tough morning and we had a lot of trouble getting out the door to the kids' swim lessons. They started specialized swim lessons last summer with a man who is FABULOUS with children with special needs.

Everything was going well...well, the lessons are at a country club and I will admit I always feel totally out of place there. And when the lessons were over, the kids wanted to stay and play.

A woman and her children got into the pool and within a few minutes I could tell he didn't like S and J. My feelings were confirmed as she went around the pool complaining about them to EVERY mother. In front of me. It was awful.

The kids weren't being great. Not awful. Not great. I was embarrassed, angry, ashamed, and we left. It shook me. I could hear what she was saying. (Calling my 38 pound Jack "mean boy.")

Yesterday I cried to my OT. Our OT future is slightly up in the air as far as a provider for the fall. She must have been thinking of me though when she shared this blog post. It resonated with me and it made me realize that my children were being kids and I need to accept them for who they are, not always think about how I am going to "help" them. Woman at the country club pool be damned.

http://emmashopebook.com/2013/07/08/early-intervention/

Navigating the world of IEPs

It is hard to know what to do.

It is hard to know exactly what to do with an IEP meeting, nevertheless an IEP itself. It is hard to read about your child...strengths, weaknesses, all of it. Inside that small snapshot are a thousand more things you want to say, a million things more you feel the school needs to know, and even more you want them not to. An IEP meeting is like an awkward middle school dance where everyone is a little sweaty and no one wants to touch. Stairway to Heaven, played for what seems like an eternity.

So, we had our IEP meetings for both boys. They went so fabulously. It wasn't anything I did, specifically, but this time we hired an advocate. For us it was super beneficial because it allowed an outside observer to come in and look at the IEPs with fresh eyes, ask questions that I forgot I had asked, and just look at things from a different perspective. She really helped to organize the meeting by working our way through the IEP. Fixing what needed fixed and clarifying things that we didn't understand. I was very grateful.

To say I was nervous was an understatement. Let's be honest: there is no fun in an IEP meeting, probably from all sides. To say it went well feels like getting a breath when you have been under the water too long. This year has been a tough one for our family as a whole, and for our kids specifically. I was thankful it went so well and we left feeling like everyone there was on the same page.

More later this week about how Jack managed to find himself in the lagoon at Magic Mountain. Never a dull moment, I swear! I have made the decision to pick back up blogging again. I am going to try to do better. I think I owe eleven million pictures of Truman!

Gumigem review

Thank you Gumigem! I was honored when gumigem (www.gumigemusa.com )

asked me to write a review of their awesome teething necklaces, 
bracelets, etc. I had a really hard time choosing, but settled on a
 bracelet which I thought Jack would love.

When they first contacted me, I assumed it was because of 
Truman, but then I started explaining how there is such a need
 for nondescript chewelry in the special needs community. 
Jack especially loves to chew and some of the necklaces are 
so in your face and obviously for chewing.

Jack loves the bracelet although he wishes it was a tad bit thinner.
He says he has to open wide to chew. Next we are thinking of
 ordering him a necklace. They have some awesome ones that
 look like dog tags and might look "cool" at school and not super
 "obvious." All in all I could not more highly recommend a better 
company, with a fabulous product. Please consider trying 
Gumigem for chewellry for your special needs kid!

Thanks Gumigem!

 

broken plate, tough times

It's been a while,

I mean, a long while. I have pictures upon pictures. Pictures that are long overdue. And I am busy, but such is life. Things have been a little hectic around here to say the least. I wish I could share it all, but I am not comfortable doing that here, which makes me kind of sad. I can tell you that things have been rough. For me, for our family. We are muddling through, and I keep telling myself that what doesn't kill me makes me stronger, right?

Tonight is a prime example. I got home from work and picking all the kids up and David didn't make dinner. He got so busy he didn't have time to soak the beans to make bean soup. And I am totally OK with that because we are all exhausted and sometimes just the daily routine of picking up, feeding, homework, cleaning up, packing lunches, checking everything twice on top of daily chores can be very tiring. And draining. And mind numbing.

So we went to Bob Evans. Let me just tell you that the winter is the worst time of the year for us. The kids just flat out struggle. Without the ability to get out and play, to get heavy work, muscle input, and regulation, they struggle. Being cooped up with each other they struggle. Tonight was no different. As soon as we get to the restaurant it is quite obvious that they are not having a good night. I mean crying, whining, bossing around, dropping things, bumping into each other, talking in a loud voice, not a good night.

They were awful to the waitress. I found myself getting so upset with them when I explained to her they have special needs, and that if she could be patient, we weren't going to let them act as they were. I sat with them and made them order as politely as they could, given the circumstances.

They cried some more. We fed them bread. Summy obsessed over it. The food came, there were maybe 5 minutes of peace. They started in again.

And then Sumner accidentally knocked his plate onto the floor, where it broke.

Cue more sobbing. I actually flushed I was so embarrassed. It was a total accident. In those moments I wonder sometimes: am I being too nice? Have I coddled my children? Is this because of me?

I cannot tell you how many times in the last few weeks I have said "What is wrong with you?" to one or both of them. I find myself cringing because I know the answer. I know they try their best to hold it all in during the school day, and I appreciate that. I want them to learn, and I want them to be their best when they are there. I try to remind myself of that when Sumner is sobbing the whole way to school in the car because he is obsessing over the vent in the car. Or when Jack is yelling at me because he is not ready to head out the door again because he missed one of the directions when he couldn't focus on them.

It has been a tough road at our house for these and many other reasons. I know we are on the right path, the road just seems extra bumpy sometimes.

Looking back, looking ahead

It is amazing to go back and read my blog from the beginning. One of my friends recently asked on our message board "What was your LO's first word?" Sadly, I couldn't remember. I thought I'd go back and read through the blog to figure it out.

I discovered two things quickly: One, I must have "mom brain." I thought for sure our kids said their first word around 9 months. I thought they did a lot of things developmentally a lot sooner than they actually did. Is this a common mom thing? Rose colored glasses? Which led me to discovery number two:

Holy cow. How did we make it through all of that? And holy cow, how did more red flags not go up with all of the things we were seeing? No wonder Summy didn't want to get in the tub! No wonder he would stand or bear weight. How cute I thought it was that Summy would spend hours watching every individual finger move, or move his arms back and forth over and over...

And Jack...not gaining weight, throwing up all the time, not able to suck on a sippy, or nurse, or pick up puffs with a pincher grasp.

Sigh.

I don't know if knowing what I know now would have changed much then, it just breaks my heart. I wish there were a handbook, or a network, or a system to tell you when these abnormal things are happening that it's part of a bigger picture. 

To the mom at IKEA

I understand.

He ran over, pushing and screeching, wanting to play with the same thing as my boys. I mediated, trying to get them to move and let him share. When he got to touch the screen, he whacked it and didn't seem to get the point of it: it was a matching game. I saw you shoot a look at your husband and make a beeline for him. The first words out of your mouth?

"I'm sorry."

You didn't need to apologize! Do you know how many times I've done the same? Breathlessly apologizing when my kids took a toy away from someone else, bumped into another kid, freaked out over something so small?

I told you that it was fine and a look of relief spread across your face. You let him play with my boys. They didn't understand it completely, and after you left, Jack turned to me and asked why your son hit the screen and didn't share.

I knew.

I have been in your shoes a million times. Sometimes it is easier to just take your child and move on rather than face the questions. "How old is he?" You really know what their eyes are asking: Why is your child doing that when he is that age? Boy that is strange behavior!

Do you know how long, how many therapies, how much modeling, how many sleepless nights it took for us to get to the point where my children could share with him?

You didn't let him play long, but as you walked away I regretted not telling you: I understand.

The "thing" about SPD

Any parent of a child with special needs will tell you that their child tries SO HARD. I mean, my own children are constantly trying...they want to make others happy and they want to do their best.

It's been hard for us because the boys have been "trying really hard" and looking pretty "typical" at special needs preschool...and then promptly unraveling afterwards at either daycare, or more likely home. Long nights of sobbing kids have left me exhausted.

I spoke with one of their teachers and explained: we want to try to PREVENT them from having trouble, not deal with the issue when they are melting down, sobbing hot messes. My point only sorta made its way across.

I am scared to death. My kids will be 5 in February, and their IEP will be up for review. Currently we have therapy almost every day, they wear things like weight belts and tension vests, and we make a host of accommodations for them. (We have swings in our house for God's sakes!) And everyone says "they look so typical" and "they are doing so well." Of course they do! That's the point!

In reality, they are always going to have SPD. They will flourish with help, but struggle without it. It was only a few short years ago that Summy didn't make eye contact or hug or kiss us. That Jack almost bit through his tongue and got an incident report daily from daycare because he was getting hurt so much.

I am so afraid of the great unknown. It's awesome they appear so "typical," but they are always going to have SPD.

Epidemic?

Something has been bothering me since our visit with Santa at the Easter Seals. We went and the boys played in the sensory gym for over and hour. The event lasted 3 hours. In all that time, we only saw ONE girl there to see Santa. All the rest were boys.

As a teacher, I work with children with autism, sensory issues, mental illness, ADD, ADHD...and while some are girls, overwhelmingly the majority are boys. What is happening to our boys? What are so many more boys diagnosed with autism than girls?

I understand that there is a genetic link. I have to ponder though: what about the life we are living now has changed, and how is it changing our kids, particularly our boys?

A while back I read the book The Out of Sync Child, especially when I was trying to learn more about my own boys' SPD. It surmised that because kids no longer "worked the field" and got muscular input, or heavy work, sensory issues have started to become more prevalent.

So is it t.v. and video games? Our society has certainly moved to a digital age...people send notes on facebook rather than send Christmas Cards and tweet when they are traveling, sick, or even cooking dinner.

Is it our food? Toxins, pesticides, plastics, high fructose corn syrup...so much more now than before. Is it what we are eating? Are preservatives, and additives, and chemicals neurologically damaging?

I realize my children were preemies, and a product of infertility treatments. Higher order multiples, IVF, IUI, and an increase in prematurity and the maternal death rate in the US all make me wonder. Is it the way babies are being born, the environment, (NICU) or a combination of both?

Whatever it is, it scares me. It scares me that we are losing boys to the great unseen: that your baby may appear totally "normal" and instead may end up with a host of health concerns. I thought I did it all right: I breastfed, much longer than most. I fed them healthy foods. I sang to them, and wore them and we started therapy asap. But I am scared that the epidemic is more than that: that we are losing our boys to something we have not yet put our finger on. I am scared for what it means for future generations, as well as our generation, if we can't pinpoint what exactly it is.

A visit with Santa!

Yesterday we got to go and visit with a special sensory sensitive Santa. It was hosted through a local Easter Seals organization, and to prepare, we filled out a sheet about the boys' special needs, and even read them a social story.

We went and the building was amazing. They had a sensory gym (the boys were over the moon to see it) that had been donated by the Columbus Blue Jackets. My mind immediately began questioning if something similar could be done in our county's BDD building, but I digress. (The seed is planted, and I plan to contact them...)

They had a blast playing in the room. (Complete with tons of swings, OT equipment, a ball pit, adaptive bikes, slides, and even a mini locker room with bluejackets equipment!) I'll post pics of all that tomorrow.

We had an appointment with Santa, so the boys went in and although Jack wasn't keen on sitting on his lap at first, (remember last year's incident?) he eventually warmed up, and although we didn't get a smile at first, Santa did later get some hugs. After briefly sitting on his lap, they played in the room while Santa talked to them. (The people there wanted them to get a chance to get comfortable without rushing them, particularly Jack.) The boys then both went back and gave a hug.

Summy asked for an "Iron Man toy" and Jack asked for a "Choo Choo Train toy."

They played some more, and on the way home in the car, Jack told me "that was a special Santa, a quiet Santa!"

All of the volunteers and workers were amazing! I cried when we were leaving the room with Santa...it was such a better experience than we had ever had. I am so thankful we got a chance to take part in it!





Special thanks to Ryan Glaze Photography for the pictures!

"What's it to you, Minerva?"

As a child, I can remember my Meemaw saying "What's it to you, Minerva?"

You see, my Aunt's husband's mother (My aunt's MIL if you follow) was named Minerva. And apparently she is nosy. So my Meemaw used to say it any time someone asked something that really wasn't any of their business, or crossed a line they shouldn't have.

At a meeting on Tuesday I was talking about the boys with a coworker. She was very surprised to hear they were in special needs preschool. She asked "What is wrong with them?"

I replied, "Fine and gross motor delays, they both have sensory processing disorder, and social/emotional delays."

She responded, "We'll it's okay though, they'll grow out of them because they were premature, right?"

To which I replied, "Probably not, but we're okay with that. It's who they are."

What did I really want to say? "What's it to you, Minerva?"

swing, swing, swing!

I am totally backlogged on pictures, and I apologize for that. However, I'd like to post pictures of our swing mounts/swings. We paid 75.00 for parts and labor to have the swing mounts installed in the ceiling. (which I think is a total deal!) He used lag bolts into the support beams, and the swings can easily hold both children, each of us, or our entire family!

The last pictures are, of course, the boys having a blast in/on the swings. We have used them almost daily since the mounts were installed. They will especially come in handy in the winter.

Finally, we feel so blessed that our county board of developmental disabilities is one of the best in the U.S. When they called and asked us if the boys could come up on stage and "cut the ribbon" and dedicate their new facility, we were beyond thrilled. I can't wait to go tomorrow and tour their new building, and I'll take lots of pictures!

lots going on!

I have so much to update you on: therapeutic horseback riding, pumpkin picking x2, so much...

but until then, this week has been full of ups and downs. I celebrated my 32nd birthday on Thursday, and we had the swing mounts officially installed in our house. Now the boys can swing to their heart's content! I can't wait to post pictures...we hired an amazing carpenter and he did beautiful work. Wheat made me so sad: instead of ordering the roping and carabiners from a famous name special needs catalog, we went to our local climbing store to see what they had. What we found: what we would have paid over 500.00 for in the catalog cost us 33.00. It makes me sick how people can take advantage of kids with special needs.

Summy's had an up and down week with his behavior. Both boys have been having sleep trouble. I am hoping that we have a better go at next week! We're making an appointment for Jack for what might be ear tube surgery number 3. His second set has worked their way out and we are finding hearing issues again. I'll keep you updated.

Hope everyone out there in blogland had a wonderful weekend!