Here We Go Again

Back in September, we took Alden to the school district to be screened for delays. We’ve known since he turned two that Alden likely is also on the autism spectrum, and having been down this road once before already we knew that developmental preschool is available for kids with delays as soon as they turn three. When Alden turned three, however, we didn’t think he really had any delays that were significant enough to qualify him for an IEP and services. A lot has changed since February though.

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Alden has been showing more and more symptoms of being autistic since his third birthday. Where he used to be able to follow two or even three step directions, we’re now thankful if he’ll follow even a single step direction. I often have to call his name multiple times to get him to respond to me, and even then he doesn’t look at me. Maybe just a, “What?” or turns his body slightly toward me while keeping his eyes trained on whatever he was doing. Eye contact is fleeting and infrequent. Emotional meltdowns and whiny-ness are at peak levels. Sensory seeking behavior is non-stop, especially orally. His preschool teacher tells us he doesn’t interact with the other kids and has trouble transitioning between activities. He also climbs on the tables and chairs and refuses to get down. Yesterday I watched him repeatedly stick scissors in his mouth and open and shut them (yes, even after being told why that was a really bad idea). Not long after that I caught him licking the steering wheel of a car shopping cart. His body awareness is so poor I’m constantly afraid he’s going to injure Dinah by stepping/sitting/falling/jumping/rolling on her. There are also frequent episodes where I cannot understand what he is trying to say, which has never happened to me before with one of my own kids. The repetitive speech and scripting has also reached the level of me wanting to bang my head against a wall. (“I like you, Mommy. Do you like me? I love you Mommy. Do you love me? I like and love you, Mommy. Do you like and love me?” It’s sweet, but loses charm after 1084 repeats of it daily for weeks on end).

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When he was screened in September, the school district’s speech therapist said his speech seemed within the normal range for his age. His motor skills, social skills and adaptive/self-help all needed further evaluation, however, as he displayed a potential for delay in those areas. Last week was that evaluation. While Alden played with a special education teacher who was evaluating him, I spoke with the school psychologist and filled out some surveys about his behavior and skills. At the end of it all, Alden was ranked as “high risk” in his social skills and what they term “problem behavior” (things like the sensory seeking behaviors and meltdowns), and in the bottom first percentile for his adaptive/self-help skills. That was eye-opening. I knew he seemed below average (just look at the utter debacle potty training has been. And the fact that he still can’t dress himself at almost four years old) but I didn’t realize just how far behind he is. I mean, it feels like he’s that far behind, but I figured that was because I’m the one home struggling with him 24/7 and more a reflection of my own exhaustion and overflowing plate rather than his skills. But no, he actually really is that far behind. A big part of it is that he doesn’t try or want to do things. There are some things he physically can do just fine (like feed himself with a fork or spoon) but frequently chooses not to (using his fingers to eat instead, for example) or it just never occurs to him to do at all (we don’t often hear Alden demand to be allowed to do something for himself, the way most toddlers want to).

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Alden’s motor skills were also on the low end of normal. On their bell-curve of scoring, 85 to 115 is the normal range. Alden scored an 87. We think this may be due in part to the fact that Alden still doesn’t seem to have fully decided whether he is right or left handed yet. He seems to be predominantly left-handed, but will still switch it up a fair amount.

So now that we have three areas of concern that qualify him for an IEP. Sometime in the next few weeks we should be getting a meeting with the preschool teachers to set up the goals for that IEP and then he can start at the developmental preschool. At this point, we have decided to also keep him at his other preschool so that he is getting interaction with typically developing peers as well. That means five days a week he will be in school.

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When I realized I could potentially have five mornings a week with just Dinah to care for – three of those mornings being for almost a four hour chunk of time – I felt a huge amount of relief and excitement. Then I felt guilt for having those feelings. I should feel sad about missing out on time spent with my son during this sweet stage when he’s so young and I could actually have him home to spend time with. But here’s the thing: it isn’t sweet anymore. It’s frustrating and exhausting. I love my son dearly, but our relationship has really been struggling as I find myself metaphorically beating my head against a wall trying to work through all these behaviors and challenges with him. We’re not doing a lot of the sweet things I would like to be doing with him (arts and crafts, building block towers and train tracks, reading stories, etc) because what those activities actually turn into is me repeatedly telling him to “stop eating glue and crayons, take the scissors out of your mouth, don’t throw the blocks, stop jumping off the couch you’re going to land on your baby sister and hurt her, do you need to go potty? Go use the potty before you have another accident.” Ad nauseum. Plus the repetitive scripting mentioned above. It. Is. Exhausting. We never actually get to the fun stuff because I spend all my time and energy trying to rein in his destructive and potentially harmful behaviors. And I just can’t keep doing it all day, every day, by myself with no break. A couple weeks ago I hit a breaking point. I felt completely overwhelmed, I was utterly exhausted from waking up all night with Dinah, and I felt like I just wanted to cry all the time from the sheer weight of it all and never getting a break. So yes. I feel relief at the idea of Alden going to this preschool. Not only for the time apart we will get (which I think will actually help our relationship, and help me to be a better mom to him) but also for the help I know he’ll be getting while he’s there. The help he really needs that I just can’t give him on my own. And in this season of giving thanks, I am very thankful for that.

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2 thoughts on “Here We Go Again

  1. We too have been there (not on the autism spectrum), but on the adhd one and I have felt many of these same feelings as you have here. I remember when Alexa was put in preschool at age 4 for 7 hours a day 5 days a week and feeling a sense of relief for myself and her as well as the guilt. We love you and hope you are able to find answers for your sweet family.

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