Tag Archives: emotions

Emotions #20 & 21: Disappointment & Acceptance

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There will be no mainstream kindergarten this year.

*Sigh*

The follow-up appointment with the psychologist revealed data that the language deficit is much greater than anyone realized. Our little guy has an above average non-verbal ability and a below average verbal ability. He would essentially require 1-on-1 assistance throughout the school day to be sure he would be able to understand directions/rules/expectations. This would not be an enriching school experience. The preschool apologized for not doing an updated language assessment sooner, and said they would have approached this past year completely differently had they known more about his language abilities. So, the bottom line: We have somewhat lost an entire school year.

Luckily, our son has a spring birthday, so retention (which isn’t really the right word, because he won’t be doing preschool again, per se) isn’t terrible. He will be back at his previous school and we are still formulating exactly what this will look like…but a specially designed program is in the works.

Luckily, we now have facts and data to show what areas we really need to work on. However, I personally have been feeling really scattered and unsure of what specifically I should be doing with him right now, though have been trying more and more to engage him and push him more in language and seat work kind of tasks at home. Overall, this has felt plain disappointing. It felt like we sort of had the school part figured out, and all plans were completely dismantled and there’s been this huge feeling of limbo. I also know that his knowledge and intelligence is way more than those tests could show (hello language deficit) and he is academically on par with kids much older with knowing things like addition, subtraction, and the 50 states.

His case conference, which was moved from May, was held last week to start being “creative” as the school put it, with his new school year plan. With 9 people sitting around a table, we came up with a shell of a school day and the teachers and therapists are still making plans for how that time will be usefully spent to remediate his language skills yet still keep up and hopefully expand on his current academic abilities.  He will still have ABA sessions in the mornings and that therapist will go with him to his first leg of the school session each day.  The school is also pushing our daughter to the afternoon session (she was asked to be a peer model) so the kids will get to be at the same school, at mostly the same time, and ride the bus home together.  I do think this will be nice.

We left the meeting feeling a little bit of relief at least in knowing where and when to send our child to school. It is also very nice to know that he is still going to be in a loving and nurturing environment. These people are all very invested in him and want him to succeed.  It has taken me over a month to really feel like I have mostly accepted this, though every time I pass the elementary school with its sign screaming “register for kindergarten” I feel frustrated or sad again.  Once the school year officially starts next week, I’m sure it’ll all start to feel more normal.

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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.

Emotion #1: Denial

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Your child has Autism Spectrum Disorder.

A handful of words that could and probably will change everything you’ve known about parenting and your current world.  We were pretty well prepared to hear this diagnosis, but we still acted like nothing was different.  We even went as far to say to each other “this really doesn’t change anything in our current world.”  

We were definitely in denial.  

As much of a blessing as an education diagnosis of ASD was going to be, I chose for the next several weeks to still act like my child was still my child without a label.  I hate that we’ll forever have to tack that on to who he is.  I think sometimes it’ll be helpful; it would have been great to tell the parents of the boy in front of us at church when our son kicked theirs in the head during a meltdown (yeah, it was a feat of flexibility and flailing).  But mostly, I picture the pitiful look of sympathy from family or friends whose kids are all normal neurotypical who will keep that label forever attached to my baby.  

It’s all feels really unfair and even weeks after diagnosis, I still feel compelled to keep it totally private.