A family's story

Two steps back…

Right now we are in a “two steps back” pattern. My kids were doing well enough, and we were enjoying the calm…and then, BAM!, we aren’t anymore. This all happened just.like.that.

Two weeks ago Jake had the tic issue and medication switch. One full week under our belts and, well, things are meh. I don’t always like that word, but in this case, it sums it up fairly accurately. He isn’t having the pronounced facial tics anymore, but the minor tic is still present. He is able to focus, but he seems a bit more anxious. And he is perseverating on having a pet lizard. I kid you not. Since at least last Wednesday. I’m trying to remain patient. He’s really, really testing my patience on this one. The last thing I need right now is to be responsible for making sure that another being survives the day at our house. I have enough going on. Jake’s nine year old brain doesn’t comprehend that while he is totally- promising- to- take- care- of- the- lizard, I have been his age. I know it will last a week–if I’m lucky.

Tate is fighting a cold. He woke up at 11:15 last night sniffling and crying because his blanket fell off of the bed. As I tucked him in and snuggled for a brief moment, he gagged. Thankfully he did not puke. But I went to bed defeated. Another week with a virus means another week of dysregulation and frustration. On top of it, I am not quite sure that his ADHD medication is at the right dose. We have a doctor’s appointment on Friday.

For the longest time he was making huge strides in reading, printing, and spelling. Academically he was gaining traction. It was nothing short of amazing. But, for the past few weeks, he has  no interest in any of it. In fact, he has to repeat his spelling and sight words from last week because he did so miserably on his test on Friday. I know I have to cut him some slack, but I know it’s more than *just* being sick.

Cole did have an ear infection. He is on antibiotics and ear drops. Have I mentioned that he is the least tolerant of medication?? He spits everything back out at us. I love being sprayed by sticky, pink, strawberry-smelling amoxicillan. My older two boys were so easy when it came to offering a syringe of medication. Not Cole. We have had to bribe him. Initially, Hubz had to hold him down while I squirted it into the back of his throat. That’s awesome. But, we have been a little lucky the past 2 times–he has been taking his meds…as long as he can have an apple juice chaser immediately after. We actually have Jake to thank for that..he brought Cole a juice box to help him feel better. Big brother to the rescue.

I’ve noticed that Cole is struggling to identify the alphabet. I just started working on it with him one-on-one. They cover the letters each week at preschool, but I know he is phoning it in there. I was singing the alphabet song with him, and he was all, “A-B-C-D-eee-ehh-shee-AA-eye-shay-blah-blah-PEE, Q, our, S, EE, oooh, bee, hmm-hmm, EX, Y, See!” Yeah…When I asked him what a letter was, out of turn, he threw out a number. What the?! He’s supposed to be my neurotypical kid. DAMNIT! So I will see how working with him goes. If I don’t see improvement, that adds eleventy billion more things to my to-do list. *sigh*

As I sit and type, I hear Tate resisting his therapist. This is becoming more common. I know the programs are getting more difficult. And I worry about his meds. And whether he’s burning out.

So, while we have taken some steps forward, there always are periods where we take some steps back..and we’re in one. I don’t like them. They make me uneasy and uncomfortable. Ultimately, the periods of setback propel us forward, as we change things up and find new therapy, programs and routines that work…but while we’re sitting in a step-back, it stinks..and puts us in a hard place.

 

 

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Comments on: "Two steps back…" (9)

  1. We were just here! I mean just now! Look around and you will see our footprints! Toots had this virus and antibiotics- we had bad news that the seizures are back on the left side from his EEG – he got a new med, was acting out and regressing. Then he got the tummy flu – and this morning and during the bug, I saw the forward steps. I knew the “regressing” comes right before the leaps but my feelings were not where my mind knew they should be.

    You know this will pass. Cole will be singing that alphabet backward, Jake will be dissecting that dead lizard and Nate will be reciting the Gettysburg address!! Okay – well maybe not all of it. 😉

    It’s hard when you are inside looking out. I know. And I send you a gazillion hugs. It gets better. And I can’t wait to see the Valentines you get from those boys on Thirsday! I know you will be smiling then for sure. 🙂

    • Thank you, Karen. I know you get it. It’s just that in the throes of a setback, it is hard…sigh. I am sorry to hear that the seizure activity is back. Boo!! Hope T continues his amazing progress, though. His ability to tell you what was going on was amazing!

  2. Oye. I’m sorry. It may not seem like it to you but you have a great attitude about the whole thing. It’s so tough to deal with everything and be sick at the same time. Hang in there and good luck and I hope everyone feels better soon.

  3. It can be so hard to see a set back. Viruses always change behavior in my house, and honestly, Aaron who is 4 is mixing letters and numbers often, I do believe this can be neurotypical because they are taking concept and making it concrete. Often times it means a step back before jumping forward. Hugs

    • Thanks, Melendy. Viruses are so awful…every time Tate gets one, we have issues with regression. *sigh* And thanks for the insight into the number/letter thing…I believe you are correct there. I hope Cole gets it soon!!

  4. Hi Lisa — getting here late as we too have been ill. I’m so sorry to hear about all the troubles you have been having with the boys — the throes of winter appear to be upon us and regression is running rampant.

    I don’t know if this will help you, but it’s something I did for Little Miss last year. I took pictures of things around our house that each had a representative letter of the alphabet — 2 for each letter (http://pinterest.com/kcfitch/little-miss-s-photo-alphabet/) Then, I printed them out, put the letter on the back of the photo, and used them like flash cards. Little Miss really liked them because they were all *her* things — not weird abstract stuff from a store-bought flashcard set… and I enjoyed making a little photo scavenger hunt for each letter!

    • Of course!!! We did that for Tate back in the day…sometimes I get a little sidetracked with my blinders on…you know, separating the “special needs” stuff from the “neurotypical” stuff, when in actuality, they’d benefit from similar activities.
      I know what I’ll be doing this weekend–thanks for perking my mind up to this!!! I love when we can make it concrete for them–it definitely helps.

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