Tuesday, October 1, 2013

Why Having a Child with Developmental Delays is Hard

Warning: This post is long but I have included pictures (that have nothing to do with this post) of potentially the cutest baby to ever live to help you get through it.

The Developmental Delays:
If you're following our blog (or our lives) you already know that Weston was born with profound hearing loss in his right ear. While we have remained optimistic of a fairly normal life and development, as he gets older we are learning that some adjustments may need to be made in our thinking. Since we've moved to Utah (oh, and if you didn't know, we moved to Utah. A blog about that will come in the future) we have been in contact with DDI Vantage, Utah's early intervention program. After several rounds of tests we are learning that Weston is actually a lot farther behind in his receptive and expressive communication than we thought. We assumed that with his hearing aid and his one good ear that he would hear close to normally and develop normally. However, his therapists are worried there may be something we aren't catching in his hearing tests to date, a ringing or static in his hears or deficits in his left ear as well, etc. Weston's receptive language (what he understands ie: his own name, common words, etc) is measuring at a 5 month old level. Example: Weston does not even respond to his own name. His expressive language (how he communicates) is measuring at a 3 month level. Example: he still doesn't make any consonant or babbling sounds. Overall, Weston is a lot farther behind than he should be having one good ear and an aided ear. Conclusion: there is something we are missing and the unknown about his condition just got that much larger.

Now, why being a parent to a child with developmental delays is hard. This is no longer just about hearing loss but I imagine all parents who have children with delays have felt something like this at some point.

1. Responsibility
I feel a great weight of responsibility. In that, even though I know his condition was probably unpreventable I still feel like somehow it was my fault. That being said, as children develop there are things parents can do to help aid the process (games, certain toys, face to face time etc) and its here that I feel the greatest weight of responsibility. As a parent with a child with any sort of delay you are going to experience a million tests. When your kids are younger a lot of these tests are performed by asking the parents questions about the child. The more questions you are forced to answer "no" to the worse you feel as a parent. You feel like you're not being a parent at all, that you're not spending enough time working with your child, or that you're not helping your child enough. You start to wonder about all the things you're doing that could be holding them back or all of the things you're not doing to propel them forward developmentally. While feelings of inadequacy among all parents is common, a parent of a developmentally delayed child calls into question every parenting decision they've ever made and forms stories in their head of how those decisions caused the child's delay. The challenge then lies in dealing with and ignoring these feelings.

2. The Unkown
The unknown is potentially the worst part. Not knowing what your child's future will be like. Not knowing how to help them. Not even knowing what's wrong and what's causing their delays. Not knowing the answers to peoples questions. It is hard to patiently wait in the dark for the next test results that may or may not help you understand. I don't know how to describe it except just that. Not knowing is hard it leaves too much room for "what ifs."

3. Protection
Any parent feels an overwhelming amount of pride in their children. Us parents, we're a protective bragging bunch. Even though my baby is 10 months old I have already spent a significant amount of time worrying about how people will treat him. Since he is not speaking yet our therapists suspect he may have an accent (another unkown), he will most likely have a hearing aid, he may have an interpreter at school, etc etc. Anyone who knows my son knows that he is just a little angel. Seriously, the sweetest little boy. But he's also very very sensitive. The thought of my child being hurt because of someone's cruelty or ignorance breaks my heart. My mother bear instincts have already kicked in and I'm sure they will only continue to grow as I am forced to fight for my son.

As a parent there are a million things to worry about. As a parent of a child with developmental delays it adds an extra oomph to the worries, fears, and heartaches. We love our son. He is a blessing and we would not take him any other way. Raising him will have some extra challenges. However, knowing the struggles at the beginning of and throughout the journey make the success that much more sweet!!

1 comment:

  1. He is SOO cute and sweet! You are not alone! Stay optimistic and find power in hope. Miracles happen and even if they aren't what you expect, Heavenly Father knows your struggles and knows you can handle it! I wish I could HOLD him and SQUISH his cuteness! We love y'all! Parenting is hard, but has so many precious moments that make it all worth it! And he has some pretty tough parents...he's gonna be a tough kid. :)