Just another mom blog…

For this child, I have prayed. (Samuel 1:27)

Regression Days

Me: Nathan, would you like a pop tart?

(Don’t judge- I’m up every few hours nursing.)

N’s reply: A pop tart. A pop tart is like a squared rectangle with four sides. Has four sides, one, two, three, four.

In other words, yes, he wants the pop tart. Sighs. Great, I think to myself, another day in regressionville.

For whatever reason, N has these days where he just seems to regress and acts more (aspergers? SID?) -whatever- than usual. I can see it coming a mile away. He parrots instead of giving me typical responses (like above), sniffs his blanket constantly throughout the day, asks me repeatedly to read his Red Light, Green light book and/or look up his tornado or car wash videos on youtube, and so forth. It’s days like these where I have to make sure I put extra effort into our coping strategies such as counting and telling him exactly what we’re going to do before we do each thing. It’s days like this where I will have to put off washing his hair and may not get to vacuum without him getting overwhelmed and shutting down on me. Meltdowns are to be expected. Going somewhere with him in tow is out of the question on stupid, cotton-picking days like these.

I’m frustrated.

I am hoping that we will get our diagnosis soon so that I will finally get some answers and help on how to help him. I’m researching and educating myself as much as I can but there is only so much I can do.  I am not an expert, and I have zero experience with maddeningly brilliant, insanely complex kids like him.  I am constantly (constantly, constantly) going over various situations in my head trying to figure out how I could have handled it better, if I missed something at the time, or simply just trying to figure out what is going on in his noggin of his, and always trying to gain insight into how he processes the world around him.

I read an article today.

The article is about how a mother struggled with the sensory processing stuff when her sons were younger. At the end also states that they have aspergers. Anyhow, one of her sons went on to use his strengths and became very successful.  It was exactly what I needed to read. I needed a reminder that despite our struggles with this, whatever it is, he has definite strengths and it is my job to help him find his niche in the world where those strengths are celebrated. He is not ordinary, he is extraordinary. Extraordinary kids have extraordinary challenges, but they can also become extraordinarily successful. So empowering.

With that reminder, my day has gone from dreading the hours ahead to staring regressionville in the proverbial eyes and saying,

Bring. It. On.

Yours truly,

Supermom with a Superkid.

 

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Zane…in grass

Ok, so to mark this very last day of my baby’s sixth month in life, I decided to try and take some pictures. I readied my camera and dressed him up in his little bubble outfit. I scouted out what I thought was an ideal location…outside, in the grass. I plopped the boy down, backed the required distance away from him according to my lens’s focal length, and prepared to make an absolute fool of myself in order to make him smile.

DSC_6423The grass, with the boy plopped down…

I called his name, repeatedly, which he repeatedly ignored…

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It turns out that he is fascinated with grass. He wanted to touch it, smell it, and perhaps eat it, but thankfully I intervened.

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I finally walked right up to him to get his attention…

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Which I don’t think he appreciated, because goodness, he busy playing with GRASS! I think the grass started to bother him a little bit, because I caught him making this face:

DSC_6480So I walked back up to him and reassured him that the grass is indeed ok, and that the photo shoot will be over soon:

DSC_6433DSC_6432Finally I tried one last time to get a decent picture of him with him smiling for the camera:

DSC_6427BAM! Decent picture of him smiling. 🙂

Here’s one more cute outtake, just because:

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Fun down South

We got to go and visit our family down South recently and had a great time. We stayed for a few days with my brother and it was the first time both of my boys got to hang out with my nieces. Nathan had a blast riding four-wheelers and Zane just liked the attention. 🙂

Then we visited C’s side of the family. I got to finally meet my niece (she’s gorgeous!). They also got to meet Zane.  Nathan played all day with my other niece (I have a lot of nieces!) and enjoyed it. Here are some pictures:

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Summer days…

Gosh…time sure is flying by this summer. I can honestly say that this has been one of the best summers of my life. What makes it so great is not that it has been easy (it has been the hardest, actually, since becoming a parent). It is not great because we have done anything extraordinary (though we did just visited family down South which was fun). What has made it so great is that I have enjoyed my boys so much, even on the rough, sleep-deprived days. One of my best friends came up to visit us and it was amazing to hang out with her. Also, we got to hang out with my side of the family which has not happened in forever. C is also happy and in a good mood and that makes for a happy family.

As for bad news, my job position is not available in the fall.  However, C’s job is sufficient for me to stay home for a little bit longer. We have also decided that it is finally a good time to move to Georgia. We have been talking about it for years but it was just never the right time.  We feel like all of the things that were holding us here are no longer there or relevant. I am just looking forward to finally being around my friends, family, and also upgrading our home. We need four bedrooms. One bedroom for each of us plus an office for C’s work-from-home job. I would like a bigger kitchen for goodness’ stakes! I think our growing family just needs a bigger house in general. Plus, where we are moving to has swim/tennis communities which the boys will love as they grow up. We just have to sell the home we have (after MUCH preparation) and then we will move. Fingers crossed!

Nathan: updates

Nathan is doing SO much better since starting physical and occupational therapy! He now goes to bed between 8pm and 10:30pm and sleeps most of the night. He takes regular naps now as well. He will climb all over playgrounds, play in the water sprinkler outside, trying to learn to peddle a bike, does much better walking up stairs alternating his feet, and his fine motor skills are improving. We are still working on getting his over-response (negatively) to touch down, his head sensitivities, and a few other things better. Hopefully he’ll keep improving.  I am very, very proud of him.

His therapists recommended that we start taking him to the pool to try and desensitize him. The only issue is that we do not have access to one, and the local pool here is extremely expensive. We decided to buy season passes again to Kings Island. It is a great place to help him confront his sensory issues in a fun environment. They have the water park for swimming and the amusement park with rides to expose him to various sensory input. We went recently to the amusement part and definitely noticed improvements. 🙂

He is now on a “sensory diet” to help him as well. Each day he has to do activities to address the various forms of input. To strengthen him we may play games involving climbing the stairs or jumping on the trampoline. For balance, riding his balance bike or hopping on one foot. Sensory play may include his sand table, bubbles, or water play. I try to do brief deep pressure messages to work him up to tolerating or maybe even enjoying being hugged or snuggled. We’ve got a long way to go, but we’re getting there one day at a time.

🙂

What they hear…

Here is a little humorous take on life with a toddler (and baby too)…

What I say: You can’t play with that.

What toddler hears: You should definitely take off running with that. As fast as humanly possible in fact.

What you say: Please sit down and eat dinner with us.

What toddler hears: Can you show me again how to make a food mountain? On the table?

What baby hears: You should scream to nurse. Like, NOW.

What you say: Don’t touch the laundry. I just washed those.

What toddler hears: Wouldn’t it be fun to pour grape juice all over them? Makes such pretty colors!

What you say: Please stay out of my makeup box.

What toddler hears: Let’s dump mommy’s make-up in the toilet and see if it floats!

What you say: Lord, please keep him quiet during church service.

What toddler hears: (Nothing. You weren’t crazy enough to bring him to the service!)

What baby hears: Aren’t you overdue for a bowel movement, sweetie? Wait until the praying begins and then let it rip!

What you say: Sit down and be quiet while I try on these clothes, ok?

What toddler hears: Why don’t you see what the lady in the next stall is trying on, dear?

What you say: Do NOT go into the laundry room EVER!

What toddler hears: Did you see the bleach in the laundry room? Why not pour some on your new bedroom rug?

What you say: Stay in the yard.

What toddler hears: Get out of the yard NOW!

What you say: We’re leaving in five minutes.

What toddler hears: You should take a nap.

What baby hears: You should scream to nurse, like NOW!

What you say: I’ll fix you some juice in a minute.

What toddler hears: I will never fix your juice, ever.

What you say: You need to walk right by me in the store, ok?

What toddler hears: Can you show mommy how fast you can run?

To be continued….

Zane’s first birthday

So…I know my child is only (almost) 5 months old, but last night I came across some good deals on birthday supplies. It really got my creative juices flowing. I LOVE doing things for my boys, and their birthdays are so much fun to plan and put together. It’s just something I really enjoy doing. Anyhow, last night I saw a cute party plate designed to be a Woodland Gnome theme. It is contemporary, cute for kids, and easy to work with.

The only problem is that if you just use the pre-made party theme, it ends up looking cheap. Plus, it is nearly impossible to reuse the supplies for another party, which I prefer to do in order to save money between my two boys’ parties. Anyhow…I noticed the grey raccoon and thought that a grey chevron table cloth would be cute and allow the colors to pop. I can reuse the paper lanterns from Nathan’s Dr. Seuss party and his leftover balloons. I put together some images on powerpoint to show you what I am talking about:

Slide1A mushroom cake is easy to make, as are little felt gnome hats. I can also spray paint some branches from the yard yellow and white, and I have an old vase I can paint yellow for the centerpiece. Some moss balls around the base of the branches would add some color and texture without interfering with the clean, contemporary look. Like this:

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I thought about having someone make some woodland animal cookies instead of doing a big cake. It’s cheaper, cuter, and most people like cookies. Toddlers can eat them without messing up their clothes like a cake with dyed icing would. Since the party is inside, it would also mean less mess!

I also always do lots of plain latex balloons. It is incredibly inexpensive and kids LOVE them. It is a great way to quickly transform a room into a party wonderland. Always use more than you think if you plan on doing this. You can also send kids home with a few after the party as part of their party favor gift bag. Easy peasy!

Updates

Hello there! Sorry it has taken me so long to update. Just a heads up that this post is being written at night when I am TIRED and in a hurry…

Things have been crazy busy here lately. For starters, C is working a second job from home in the evenings. This is in addition to his full-time job.  He was actually hoping to find a job that pays more to help us while I remain on unpaid maternity leave until Fall semester begins at the end of August. This new job’s full-time position lacks the benefits that our family needs and so the compromise is for him to work part-time there until he is able transition to full-time after I start working again.

Last week I was trying to get over mastitis, a cold, and dealing with a sick toddler (cold) and a teething(!!!) infant while being a single parent during the week. It’s HARD to run a house and tend to both kids 27-7. However, I love that I get to be here and raise my own children. I just can’t imagine putting Zane in daycare right now. For one thing, he absolutely refuses bottles. We have tried everything and still the boy hates them. He is over the age limit and a few pounds over the suggested weight limit to start solids, so I am slowly trying to introduce rice cereal in breastmilk. I am hoping that he’ll associate food with spoon feeding instead of just nursing and possibly be more willing to take a bottle or milk from a spoon. We shall see.

Nathan is doing well. He is going to occupational therapy (OT) once a week and biweekly physical therapy (PT). They are helping him coordinate his body better, build up equal strength on both sides of his body, develop better balance, help core strength, and deal with his sensory issues. He also had a evaluation at the local public school to see if he qualifies for free preschool there in the fall.

While at the evaluation, the teachers were there and got to interact with him. They did several evaluations and noticed that while he is incredibly bright and articulate, they did notice that he has some autism (ASD) language traits. They asked me if I have the results from his autism evaluation, but I told them that the waiting list is up to a year long. So in the meantime, they told me to just keep him in the OT/PT program he is on now and they will incoroporate his current therapists’ recommendations and do his OT/PT there at school. If he does not end up being diagnosed on the autism spectrum, then all of this early intervention should get him caught up by the time he starts elementary school. If he DOES fall on the spectrum, then this will probably be ongoing.

While there, a few teachers made the mistake of touching him. One tried to grab his hand to guide him to a table, and the other was trying to show him how a toy worked. He went from happy chatting away to throwing mini fits over being touched. Nathan HATES being touched, hugged, kissed, held, and so forth, and so I had to quickly mention this to them. They are professionals and trained to work with all kinds of children so I am sure they’ll figure his preferences out very quickly. Nathan is VERY excited to start school in the fall! He loves the classroom, and loves the idea of riding the bus each day.

His mommy is really excited as well. 😉 I went ahead and bought the rest of his winter wardrobe while things are on clearance. I bought him some new cute saucony shoes for a few dollars, some other shoes from The Childrens Place for $3-4 each, a $25 puffer heavy jacket for under $10, tons of long sleeved t-shirts and sweaters/sweatshirts for $0.49-$4 each, pants for $2.50, a light weight jacket for $4.99, and 2 fleece jackets for $1.99 each.  Oh! I found him two VERY cute winter hats that are made to look like silly monsters with mohawks and horns for $1.99 as well.  His baby brother got matching clothing whenever I could find his size. I would say that between the two of them I probably spent about $75 on around $500 worth of clothes or so. I still need to get him 2-3 pairs of jeans but I just haven’t found a good enough deal on any yet.

Also Zane and I went to yard sales for the first time this weekend! I found a Ralph Lauren button-up shirt, swim trunks, and a fisher price”car wash” toy for Nathan for $3 total.  Speaking of Ralph Lauren, I had a TON of Ralph Lauren clothes and other smocked rompers in a separate bag which I was planing on using for Zane. I can’t find it ANYWHERE. I am afraid that the bag got put accidentally into the donate pile and picked up by the charity. The thought makes me feel absolutely sick, so I am just hoping that the bag is misplaced somewhere (I HOPE!)

TTYL 🙂

 

 

 

SID (part 2)

Yesterday I had to take Nathan to the doctor to be tested for strep throat.  I decided to try some techniques that I read about online to try and help him do better with the doctor’s examination. He hates people looking into his mouth, so I made up a game to help him with this. Using his toy flashlight, we took turns “counting teeth.” First he got to use the flashlight to count mommy’s teeth, then I got to use it to count his teeth. I made a big deal over how many teeth he has. Then I told him that tomorrow the doctor won’t believe how many teeth my big boy has, so we’ll have to show her all of his pearly white teeth. I mentioned that she will have the special light to look at his teeth so that she can see them clearly. He seemed to be ok with this.

It didn’t work, at least not this time. As I got him dressed to go, he immediately started saying, “No look ears! No look mouth!”  He hates and DREADS this part of the doctor’s visit, along with anything else that involves being touched for any reason.  He repeated this over and over and kicked my seat on the way there. In the waiting room, he was a bundle of nervous energy so we went outside to run along the sidewalk to help diffuse it some. We finally went back and it was a nightmare from that point on.

He had an absolute meltdown. He hid under the table yelling, “no look ears! no mouth!” until I got the nurse to hold Zane while I dragged him kicking and screaming out from behind the table. It took me and several nurses to hold him down. I’m sure people in the waiting room thought the doctor was either performing a lobotomy or tooth extraction without sedation instead of just trying to do a simple examination. By the time she finished her brief examination, he was hyperventilating and his voice was hoarse from all the yelling.

I remember at one point, before the nurse offered to hold Zane, both Nathan and Zane were fussing. Nathan was obviously starting his meltdown, and Zane was starting to cry because he was hungry and wanted to nurse. I had to chose between letting him fuss or trying to help Nathan. I felt so helpless that I pretty much started to laugh a little at the whole situation. I think sometimes you just have to laugh or else risk crying over it. It actually ended up lightening the overall mood in the room some.

The doctors and nurses were very professional about it and understanding. They didn’t give me the impression that they thought he was just being bratty or that I am a bad parent for not being able to prevent the meltdowns. However, when we walked out through the waiting room everyone stopped and looked at me to see what in the world all the fuss was about. It made me realize that not everyone will be so understanding and some will ignorantly assume wrongly that I am a bad mom or that he is a bad child.

The best way I can explain it is that a tantrum is designed to manipulate or control the child’s environment or people. A meltdown in a child with autism or sensory issues is totally different. Nathan’s meltdowns occur because he is overwhelmed and in “fight or flight”mode. He first tried to flee or hide from what bothers him, which is why he hides under the table. Since it doesn’t work due to me dragging him out, he starts the “fight”mode. He is NOT trying to be bad. He is completely and utterly “lost” in his fight to avoid his fear that not even I can calm him down. I don’t think he even realizes that I am in the room at that point. THAT is a meltdown.

To understand how he feels, imagine your worst fear. It could be height or spiders or snakes. Nathan’s fear, due to his sensory issues, is having his head touched. The only thing worse than that is to have his ears touched. So if your fear was snakes, imagine a bunch of people stronger than you telling you that you need to sit calmly while they place snakes to slither all over you for whatever reason. If the fear is serious enough, you would probably try to run from it. If they tried to drag you to force you to sit down while they bring the snakes toward you, you would probably start fighting. If you are able to get through it somewhat rationally, it is because you are mature enough and have been taught to deal with things better. A three year old does not have these skills yet. This is why he will be going to occupational therapy, to help him learn how to cope with sensory fears better. It won’t erase his fears, but it will help him learn to get through it. Or so we hope.

So that is that.

For other news, we went to grab lunch as a reward after his doctor’s visit. At the drive-through, he got to place his own order. Through the open window, he said, “HIIII!!!! May I have apple juice please? A one, two apple juice? Thank you!” He was so polite and sweet that they gave him two apple juice boxes and only charged me for one. He almost always says please, thank you, and excuse me. I am so proud of him. 🙂

Zane is doing really well. He is an absolute chunk of love and now wears 9-12 month clothes even though he is only three months old.  I will post his updates soon. 🙂

My SID kid

As Nathan is getting older, it is becoming increasingly obvious that he is, well, different. Up until recently, we’ve been explaining away, justifying, or flat-out denying that his quirks are anything less than typical child developmental phases. However, since having the baby I am no longer able to devote all of my energy and time into making sure his environment and routine doesn’t set off melt-downs or aggravate his quirks. So I started to read online about these quirks of his, and to my surprise other moms were dealing with the same things. The only thing that bothered me is that these mom’s children have all been diagnosed with things such as Autism Spectrum Disorder (ASD) such as Pervasive Developmental Disorder-Not otherwise Specified (PDD-NOS) or high-functioning Aspergers (HFA), or they were diagnosed with Sensory Integration Disorder (SID) and sometimes both ASD and SID.  This alarmed me.

Like…a lot.

So I had a choice to make. I could either keep denying/justifying his behavior and just hope it goes away soon, or I could run all of these concerns by his doctor and see what she says. I chose to do the latter. After typing up a list of his quirks, I am glad I chose that route. Seeing everything on paper forced me to accept that he is indeed different. It also made me feel emotional because frankly I have been struggling with dealing with it. Each melt-down made me feel like I was failing him somehow, that I just wasn’t a good enough mom to him and that is why he struggled so much with ordinary life events. Irrational I know, but it was all I could come up with.

I also found some online screenings- one for ASD and another for PDD-NOS. The ASD evaluation (called the MCHAT) suggested that he is at high risk for Autism. The PDD-NOS suggested that he has moderate PDD-NOS. I printed these results out as they suggested to do and presented this along with a list to Nathan’s doctor. She sat with us for over an hour asking us questions and going over the list with us. By the time we were done, we were surprised to leave the examining room to find that the office had already packed up and gone home for the day.

A few of the quirks that we mentioned to the doctor:

Nathan has incredible memory:

We can drive somewhere once and he instantly memorizes the route to the place. Unfortunately, if we go a different route to the same place he will have a meltdown. He will kick and scream that we are going the wrong route.

He has memorized tons of dialogues from watching Netflix on his ipad. He frequently sees a kid’s show on TV and will open netflix, find the correct show/season/episode, and fast-forward the netflix version so that his ipad and the TV are synchronized.

He has narrow, yet advanced interests:

His interests can pretty much be narrowed down to tornadoes, rockets, volcanoes, planets, and….car washes. Oh how the boy loves his car washes! He spends hours watching car washes on youtube and setting up accurate models of car washes for his toy cars. He talks constantly about his other interests and has no idea that his audience is beyond bored with hearing about it. He says the same things over and over again about these interests of his, all of it from things he has watched or heard somewhere but mostly from his ipad.

His free play is repetitive and he is strict about accuracy. All of it comes from a story or script he watched on youtube, tv, or netflix. He plays rocket launch for hours, and heaven forbid you vary the countdown to launch. He points to pictures of the solar system and tells you all about it, but says the same things to the point that we’ve heard it all 500 times. He watches videos of spinning tornadoes and spinning brushes of car washes to calm himself down.

He has serious sensory issues:

He HATES washing, brushing, or cutting his hair. With washing his hair and cutting it, he has gotten so upset that he throws up.  Nothing can be done to ease the process for him- bribes don’t work, candy while doing it doesn’t work, discipline makes it worse, and you can forget about tricking him or distracting him. Also- don’t touch his ears. At the doctor’s office he will hide under the table and kick and scream horribly if the doctor tries to look into his ears.

He hates being hugged, snuggled, kissed or touched. He barely tolerates any of them. The only time he volunteers anything is if it is a part of his routine, but it is rarely a genuine response. The fact that he isn’t snuggly or hugable is probably one of the hardest, heartbreaking things for me as a mom.

He hates getting his hands dirty. Even as an infant he wouldn’t touch messy foods. He also has always smelled everything before eating it.

He is physically behind and quirky. He hates the grass touching his bare feet, even as an infant. He also doesn’t seem to understand the process of learning new things physically, like riding a bike for instance.

I could go on and on about everything we talked about to the doctor. At the end of the appointment, we came up with a Plan of Attack to get Nathan back on track again. She diagnosed him with Sensory Integration Disorder and motor delays. He is also in the process of getting on a very long waiting list to be evaluated for ASD/PDD-NOS at our local Autism specialist clinic. As of next week, he will be doing weekly physical and occupational therapy to help him have a more typical experience with things such as washing his hair.  In the meantime, I am doing everything I can to learn how to help make things easier for him.

I should be saddened by a diagnosis, but I am not. He is still my Nathan, my quirky, brilliant, funny little boy. Now that I have a diagnosis, it has really opened up a whole world of resources to me, and I hope utilizing them will make a big difference to him. A diagnosis doesn’t change who he is, it just helps explain and predict his behavior. All of these things help me become a better parent to him and helps me know what I can do for him. Quirks and all, he is still an incredible child and I am so blessed to have him in our lives…

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And Handsome too!

 

 

 

 

 

 

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