Friday, April 12, 2013

Adjusted Expectations

Everyone has always been so impressed with my attitude toward Spencer and his diagnosis. I've insisted that I expect typical milestones from him, and that we'd adjust and work as necessary. I'd been told that the first year was much like any other baby. We were working toward the usual milestones. Spencer had very few hurdles during that first year, considering he has Down syndrome.

Lennon (16mo) standing next to Spencer (15mo)

I recently saw Spencer next to typical babies at 14 & 16mo. One of them (not pictured) was, admittedly, larger than average. Still... it was a bit of a shock to see these big babies up and walking next to him. I mean, I know Sasha walked at 10 months and Tyler at about 13, but I don't really compare. I just watch Spencer working on his milestones and am proud. It was almost a slap to the face, a wake up slap. A couple days later we were at a meeting with just babies that have DS and everything just seemed so much more "normal." These babies are all close to Spencer in age and they are all hitting their milestones in their own time. We all support each other and celebrate each other's kids' milestones, even the ones that our own babies haven't reached yet. Just having them all be smaller, though, was a big thing. They're all good sized (healthy)... based on the Down syndrome growth chart.

Lily is 3 weeks older than Spencer.

So I've had to adjust my expectations. Spencer is still catching up with talking after having fluid in his ears. He is going to Speech Therapy once per week and it is going great! He is going to Physical Therapy once per month to just watch his development. He needs a little work due to his hyper-flexibility. His knees and feet point out. He often stands from a squat. Its impressive, but they want him to kneel then stand, in a healthier way. We're going soon for an Occupational Therapy evaluation to see if he could benefit from help there, too. In case you aren't familiar with OT, it helps the client / patient with daily life skills, even adjusting the environment if that is what is needed.


  1. I feel you on's hard not to compare our little ones to other babies at times. Even though I always say that my son will reach his milestones in his own time,and most of the time I don't let it get to me, I still feel just a little ping in my chest when I see a 'typically developing' baby around the same age doing so much more than my son.

  2. I often feel the same... Most days are great but occasionally i feel a bit sad. Silly isn't it!!

  3. Perfectly normal. :-) I only have one child, and I find that in those early days (and even now) I was much more comfortable being around other children with Ds, as they were all so much more evenly matched than her typical peers. It *does* get easier, but I still feel it.

  4. It's such a strange balancing act... wanting to expect high things knowing that there are bound to be delays. Sometimes they can be surprising. I've tried to adjust my expectations along the way, in that I expect things of her, but that I expect them later. So far that is working well most of the time. I still have moments when I have an emotional response to seeing children her age. And the gap keeps getting bigger. I too find a lot of comfort and happiness spending time with my friends with kids with Ds.

  5. Gosh, I can really relate to that feeling of surprise (and, for me, also confusion sometimes) when being around typically developing children. I'm finding that parenting (in general, perhaps? Add you know, I've only had a special needs child.) has a lot to do with adjusting/managing expectations, and meeting or kids where *they* are.

    Tons of love to you, mama. You're rocking it!

  6. It'll be interesting to see that as our son gets older. So far he's never played with another baby his age, with or without DS! We know he's behind where our older son was at the same age, but our older son was way ahead on every milestone so we don't expect any siblings to necessarily even come close to matching. Luckily I have a poor memory so I couldn't compare exactly if I wanted to! Lol.


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