The Sub-Culture

There’s a lot of stuff rumbling around in my head and heart lately related to being the mother of a child with special needs.  It mostly has to do with the sub-culture that is Special Needs Parenting.  Many have asked if I/we have found a support group or someone in a similar situation to talk with.  The truth is, while I do have a couple of friends who have kids with special needs and we message on Facebook sometimes, I’m leery to jump into the sub-culture.

While well intentioned and fiercely in love with their children, I have been overwhelmed, annoyed, disheartened and made to feel inferior by more than one parent of a special needs kid and their unsolicited advice.  Overwhelmed and disheartened when it seems all these moms (in my experience, it’s been moms I’ve spoken to) can talk about is their child’s latest struggle or success, therapy or doctor appointment.  I’ve been told to hold on to hope and to fight harder for my child and the services he does and will need.  I’ve been questioned about my ability to work full time outside of the home and keep up with Connor’s needs. 

Frankly, my life is crazy enough.  I haven’t been wanting to take it up a notch by entering into this kind of community.

I also think I have a fear of hearing and seeing what might be ahead of us.  I don’t think I’m in denial about Connor’s diagnosis and what that might mean for him and us, but it is quite easy to just look at the here and now.  Being around other kids with special needs and their parents scares me.  Scares me enough that I had decided not to go to the Joubert Syndrome conference this summer.  I had a physical, anxious reaction every time I thought about the conference and interacting with other JS families.

So all of this has been on my heart the last couple of months.  I’ve really wrestled with these feelings as my extroverted side has always driven me to engage in groups, meet new people and go to things that I can learn from and have fun at.  To all of a sudden feel like you want to do the exact opposite has been hard.

But I’m entering a new place with some of it, realizing that this is a community and sub-culture I must be a part of in some way so that I can be the best mom possible for Connor.  We’ve decided to FOR SURE go to the JS conference.  Brent really wants to go.  It’s in Minneapolis so we’ll be able to see friends and family and bunk up at friends’ houses for free. And we won’t be able to go in 2015 because of the ELCA Youth Gathering being the same time, so it would be four years until we have the opportunity to go again.  And while I’m still nervous and not sure, I don’t feel like I’m going to throw up every time I think about going.

I joined the Facebook group for JS Parents.  I’ll probably just lurk for a while and see what folks are talking about, but it’s a step.

I’ve also Googled a family nearby who has a daughter with JS.  She was featured in a local paper not too long ago because of her trip with Make A Wish.  Not quite ready to call yet, but I have their number and hope to make contact with them this spring.

So I’m dipping my toes into the sub-culture of Special Needs Parenting.  Curious, wanting, leery and ready to defend our family’s unique situation and decisions if need be.  I ask for your prayers as I navigate these unfamiliar waters!

Cute picture of my little Valentines just because!

Early 2013 Update

It’s been a while since I’ve hit the ol’ blog.  

Making eyes at Tink

First, let me just share that we had a fabulous time at Disney World! Clara loved meeting the characters, going on all the crazy rides, trading pins and seeing the sites.  Connor was a champ.  He got to go on several rides and flirted with all the princesses he met.  One of our favorite moments was when we got to visit Tinkerbell and her sister, Periwinkle.  It was on Clara’s “must do” list and Connor was mesmerized by the fairy sisters.  We all had such a great time and it was wonderful to get away and focus on family and fun for a few days.

Connor’s had a number of appointments at CHOP in the last week.  He had a check up with Neurology in the Neuro-Muscular clinic.   His neurology doctor has been out on maternity leave, so they hadn’t seen him since August.  She, along with the PT and OT of the clinic, were pleased with his progress.  He was quite the charmer for them and even sat unassisted for several seconds when the OT was examining him!  We also met with the geneticist.  She shared the results of Connor’s genetic testing and so far the results have come back negative.  They just started testing nine other genes for Joubert Syndrome though, so now we’ll do that test and see what the results show.

At the seating clinic trying out a new chair

After the neuro appointment we went to the seating clinic to figure out what pieces of equipment Connor needs.  We ended up ordering a stander, a seat and a bath chair.  The process of choosing was a bit overwhelming as there are so many choices and things to consider.  We had to use our “phone a friend” and draw on the expertise of our PT at one point.  I hope we made the right choices.  Unfortunately, the equipment takes three to four months to arrive so it will be a long time before Connor gets to use his new stuff!

A couple of days later, Connor had a check up with the ophthalmologist that did his surgery and has been watching his ptosis.  They redid the vision test Connor didn’t do so well on in December and this time he scored right where he should!  It’s a test that requires him to track side to side and the doctor thinks that because of his nystagmus the tech who did it last time had a hard time deciphering what was tracking and what was unwanted eye movement.  This time they had him track it up and down and he did great!  All that vision therapy is paying off!  The ophthalmologist was pleased with how his eye looks and we don’t have to see him again for a year.  We’ll continue to see the other ophthalmologist who has mainly been looking after his nystagmus and strabismus. 

Next week is a GI appointment and a repeat swallow study, so prayers and good thoughts for both of those are appreciated!