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I feel like we parents blessed with a child who has Down syndrome all have one major cross to bear. Each one may be different, but they are all equally frustrating.
From the many parents I am now acquainted with, I have become familiar with many of these individualized issues. Some of our little darlings face various health-related problems. Some children struggle with muscle tone and need lots of therapy just to get them crawling or walking. For others, issues might not show up until our children are slightly older and may deal more with speech, behavior, or potty training.
Our personal struggle seems to be very different from many of our friends'. While Daniel never required major medical attention, he crawled and walked with little assistance from a therapist, and potty trained surprisingly early and easily, he has one major issue we struggle with – eating.
Our Dan has some serious sensory issues in and around his mouth. These issues have led to a major, major delay in eating. We started seeing a specialist almost two years ago when at the age of 3 Daniel was still unable to eat solids.
Here we are two years later and have finally worked our way up to mac 'n' cheese, mashed potatoes, and various other foods that require very minimal chewing.
With every newly-tolerated food, we celebrate. But then there are nights like last night. After two days of struggling with Daniel gagging and spitting out foods he used to eat with ease, I caved and gave him oatmeal for supper.
I just couldn’t handle the fighting with him anymore. I whined to Ryan, “It’s our fault. We haven’t been working with him enough.”
I went to bed defeated. Then in the wee hours of the morning I woke up, fired up my laptop, and found this. A letter to parents with children who have Down syndrome from a mom who has not one, but two sons with the very same condition. One of them is also named Daniel.
"My 4 year old with DS has been incredibly delayed with all his milestones, and I spent a lot of time blaming myself. Only this year did he learn to walk, he was 2 when he creeped himself forward as I watched my 7-1/2 month old do last week.
I carried the burden that because I wasn't working with him enough, because I wasn't trying hard enough, because I wasn't good enough for him, that it's my fault he is so far behind.
So I'm here to say, It's not your fault, please believe me, it's not your fault.
I have done so much research, in both traditional and non conventional therapy and supplemental treatment. I know a ton about early childhood development and gross motor and fine motor skill progression. I have hit my knees in prayer more times in the past 4 years than ever before. I have searched and searched for that missing key that would turn on a switch for him. No doubt about it, all this knowledge has definitely helped my youngest, Daniel, start off on the right track. But nothing I have done with Daniel, that I didn't do with Zeke, can explain the differences in my kids.
They are who God made them, and they were put on this earth for different purposes. And I love and am proud of them equally as much."
These words saved me. Raising a special-needs child is a dance, three steps forward, two steps back. Things that our children were able to do just yesterday are forgotten in an instant and we find ourselves starting from square one often.
The truth is – each special child follows his own timeline. The hardest part of being a special-needs parent is learning to be patient with our children as we love, care for, and encourage them through childhood.
Photo credit: Thinkstock, Whitney Barthel
Opinions expressed by parent contributors are their own.