Category Archives: Home Life

Emotions #18 and 19: Concern and Guilt

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Summer has been insane so far.  I remember the kid-free days of getting a zillion library books and devouring as many as I could throughout the time off school (which was also my work for nearly a decade).  This summer, we are filled with appointments, therapy, camp, swimming, parks, and family time.  I filled up my gas tank 4 days ago and have driven over 150 miles just shuttling between camp, therapy, and appointments.

With all this busyness going on, we have started to feel concerned that we are putting too much on a child who is barely over 5 years old.  He is exhausted,  we are exhausted, and there is still so much that needs to be accomplished.  We tacked on therapy sessions after camp hours all this week and next.  So, all week, we have sent our son to special needs summer camp from 9-3, picked him up and gotten to him therapy by 3:30 to stay til 5.  Camp has been amazing.  Therapy this week has been ROUGH.  Sleep has also been a little off.  When he is so worn down, his sleep patterns tend to be more erratic.  So, how much is too much?

There’s also all the time he is away.  He gets dropped off and I feel so happy for him to be in a place he’s happy to go to, and I think of all the fun things he will do that day.  Then the guilt creeps in.  I feel horrible guilt that the other 2 kids and I have been able to do fun activities while he’s been gone at camp or therapy.  Yes, he has fun at both of those places (for the most part), but I wish I were able to just have all of my kids home and do fun things together.  He doesn’t want to go to the pool we joined, so we do that while he’s away.  His diet is gluten free, so the rest of us went to a strawberry festival and got shortcakes because he wasn’t around.  We went to the zoo and didn’t have to stand and watch the fish for a million minutes.  I miss him in those fun moments and feel guilty that he isn’t getting a regular summer.  But, truth be told, it is certainly easier to go places (whether fun or errands) when there are only 2 tiny bodies to worry about.  There’s 6 weeks til school starts and I keep telling myself this will be worth it.

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Dual PT Update

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Well, it has been a couple weeks and we are doing alright with all the potty business!  We are basically back to where we started before the stupid pull-ups, so that is good.  And as for  little Beanie, she is mostly accident-free.  It looks like our June 30th deadline is not going to be an issue.  

Now, the reason I say things are just “alright” is because both kids are on a poo in the potty strike.  WEIRD.  But, if that is the biggest issue right now, and the only other issue is the occasional accident, I’m good!  

Double Dip Potty Training

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We are going for it.  Double potty training……as in, my 4 year old and 2 year old at the same time.  With d-day for #3 looming not so far off in the distance, we are operating under a short time frame before having to wait.  Our doctor said if they don’t “have it” by June 30th, cut our losses til after September.  That would mean there would be a few months of 3 kids in diapers, and we are hoping to avoid that (I mean, who wouldn’t want to avoid that?!?).

It was super-disappointing that our original potty progress was derailed this winter.  The “anxiety” he was supposedly having at school that required us to send him to school in pull-ups just made him lazy and complacent.  After a few weeks, he wasn’t going at all at home anymore.  I THINK he still did sometimes at school, but it wasn’t like they were giving me the run down of his potty breaks each day.  So, I went ahead and gave myself permission to be lazy and complacent as well.

But now, it’s go time.  We have been in the throes of potty training since Sunday.  As of today, there have been a LOT of accidents….but we have also had some nice successes.  It’s pretty amazing how seeing your child pee on the potty ONE time can erase a day’s worth of accidents from your mind.  And it is also amazing how bonkers repeated accidents can nearly bring me to my breaking point.  Right now, our biggest hurdle is the p-double o.  The little mister has always been very against doing it in a toilet, and so that makes it extra challenging to get little sis to jump on board.  

He is basically back in the same place he was at the peak of our progress: little to no objection about peeing on a toilet, occasional accidents when busy doing something more preferable, and no poop on the toilet.  

My daughter, however, is a complete roller coaster of progress: A day of all accidents and one pee success, followed by the complete reverse (one accident and the rest successes….but poo withholding).  Repeat over the following 2 days…..She did manage to use the potty at the babysitter’s, so that’s good.  

We just think that if ONE of them gets totally on board, the other will follow suit……and we’ll keep thinking that until proven wrong. 🙂

Discipline and Kids with Special Needs

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It seems like this is one of those things in every parent’s life that they have to figure out.  For us, it is more like a revolving door of “what’s working today?”  One specific element that comes up is spanking.  Now, while I don’t like the idea of it at all, I definitely have had some moments where it has been quite appealing (or seemingly deserved).  But, it is just especially not ok when your child has special needs.

Everything to my son is black and white.  There is just no gray area at this point in his life.  So if I were to get upset with him and spank him, that to him translates into “hitting is ok.”  It wouldn’t matter the scenario.  Sometimes when he is super duper frustrated, he’ll swat at whomever he’s frustrated with (or maybe just who is the closest).  So we use those moments to talk about how wrong hitting is.

The reason this whole thing came up in my brain today was from something I witnessed.  I had a chance to have a momma and me date with my little boyfriend at the Museum and we were planted in front of the trains.  Having been in the same spot for over 30 minutes (a treat especially for me), we saw a lot of people come and go.  Most of the kids lost interest after a few minutes, since there’s so much more to see, but there was one other group that seemed to linger.  After a few minutes, I realized that the oldest child (who couldn’t have been more than 8) had Down’s Syndrome.

He was clearly enjoying the trains, and the rest of the kids with his family were ready to move on.  The mom (who hadn’t been anywhere near the train exhibit for several minutes) came back up and told him it was time to go abruptly.  He must’ve said something to her along the lines of not wanting to leave yet, and she quickly smacked him hard on his hand and said something about cooperating.

Now, I am obviously not in their situation, but it seemed pretty harsh to me.  There was another mom right by me who I thought might cry….or immediately call CPS.  It just was one of those moments that reinforces why we do things the way we do in our house.  Yeah, we may not have the most well-behaved kids, but they are definitely learning right from wrong in a safe space.

One Year Later

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It’s pretty weird to think that today it has been a full year since the educational diagnosis.  Like I’ve said before, it really didn’t change anything at the time.  We expected the diagnosis.  We had already been working on things and trying new tactics because of EI.  But then the EI stopped about a week or so later (because of his 3rd birthday).  So that was a little weird.  But, we kept moving right along as normal and pretty much ignored that anything had happened til school started in August.

My husband and I were just talking recently about if we think things are really that different from where we were a year ago.  I was inclined to say no.  But he was able to list many many things that have progressed or improved.  Maybe I’m just “too close” to the project.  Of course, I agreed with the things he was saying, but I really wasn’t able to come up with it on my own.  Here are some great progressions in the last 365 days:

  • much more talking/vocabulary/labeling/sentences/requesting with words, especially in the last few weeks.  I can just give a “look” now when he only uses one word, and he will automatically rephrase in the form of a full sentence/question.
  • much less rigid.  Any changes to routine used to throw him off or send him into a tailspin (i.e. leaving fun places, having to go certain places, not getting something he wants right away).  The best example is going somewhere like the park.  He used to get super-pissed to leave.  But now, complies right away or initiates leaving himself.  
  • along with being less rigid, he’s also able to adapt to several routines.  It took a long time to get used to school (which is obviously SO different from home), but he has done so well.  They have even changed the way they do things a few times this year because of more and more students joining, and he has gone with the flow every time. 

So, there have been changes for the better, which I need to remind myself of.  It’s very easy to get so caught up in daily life anyway, so I have to remember to enjoy these victories, no matter how teeny.  I also have to remind myself that each of these improvements have taken TIME.

We had his IEP meeting yesterday and are so happy with the goals laid out for next school year.  Everyone who works with him had lots of positives to share and we know will work diligently to get him as ready as possible for kindergarten.  Thank goodness we have another year with all of this strong support!!  We were also really excited to learn that based on his progress, their recommendation was to stick with his same teacher.  I wouldn’t agree with that in older grades, but for right now, it is absolutely the best decision.  Good plans are in place which we hope will really set him up for great successes this last month of school and next school year.

Dipping Our Toes in the GF Water

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Oh my, am I overwhelmed!  We’ve been toying with the idea of GFCF (Gluten Free, Casein Free) for a while.  We have pretty much determined that we don’t think a casein/dairy elimination would make a huge difference, but that the GF would be easier to try out first.  

“Easy” obviously needed to be in quotes.  I started by making a list of all the items my son actually does eat that contain gluten.  Next, I started some light researching to see if I could find substitutes for all of those favorite things.  So far, I haven’t found good subs for all of them, which makes me a tad nervous.

I found GF food lists online for stores like Trader Joe’s and Whole Foods, and thought I should actually set foot in those stores to see what’s what.  Holy smokes!  This is going to be a crazy expensive transition.  I definitely need to search out more and even check our “regular” stores since so many do offer specialty items now.  But for the meantime, I grabbed a few things to have the kids test out.  We’ll see how it all goes!