Sometimes It’s Hard

Sometimes it is hard having an older “child” with special needs.  I will admit that there are times when I wish I could turn back the clock.  Granted, they are few and far between, but if I’m honest, I do have them.

There are things that are easier when she was smaller.  She still has the mind of a toddler in a 6 foot tall frame.  She loves to swing, but the trend today is to take out all the old style swings and put in big play structures.  I watch her struggle to figure out how to play in a world that is too small for her.  It breaks my heart. 

When we would go to the grocery store, so many would stop and say how cute she is.  Now, it’s mostly stares of disgust because she still drools.

No, it’s not all bad.  We live in a small town and shop at the same Safeway.  All of the people who work there know and love Taylor.  There are cashiers that tell me she lights up their day with her smile when she comes through their line.  I love those people.

I’m not trying to write a whiney post but these are just things that are on my heart lately.  I used to belong to an online support group for Trisomy 9p.  I eventually stopped posting and left the group because there was just no connection with the other parents for me. 

Taylor is one of the oldest, still living, T9p kids.  She also has a lot of medical issues.  She was also one of the most profoundly developmentally delayed.  The parents of the younger kids didn’t want to think of their kids being as affected as Taylor.  I understand that perfectly.  They didn’t want to hear about seizures & cancer.

Another mother who’s daughter is Taylor’s age also left the group.  She felt the same.  The other big issue is school and/or programs.  Taylor loved school but she can only go until she turned 21.  Then they graduate them.  Most of her class went on to work programs.  That’s not an option for Taylor.  There are really no options for the profoundly affected “kids”. 

Right now, Taylor is bored.   She wants so badly to DO something but because we run a business from home, it’s not possible.  She does get her respite care but right now, that’s a problem.  Not because of her care providers…they are awesome people.  But because of the brokerage firm that handles money & paperwork.  I’m switching firms so hopefully, this will resolve the problems.

I know this sounds like a complaint blog and I apologize.  I just needed to get it out.  I guess I just want to help other parents because I’ve been through so much in the past 22 years.  I just never know if the parents want to hear what I have to say. 

Eh, I definitely sound whiney now.  I’ll take a cue from my happy-go-lucky child and just smile

An older picture, but one of my favorites.  She’s so stinkin’ cute!

Feeling Like an Outsider Sometimes

I haven’t been blogging about Taylor much lately.  Part of it is because the business has kept us hopping for the past several months.  In this economy, I’m not complaining.  It also allowed The Bossman and me to take a much needed 5 day vacation to the Oregon Coast…Seaside to be exact.  Just he and I.  It was bliss.

The above picture was taken on one of our many drives.  I’m already to go back.  Taylor actually stayed with her sister so that was great.

Okay, so on to why my title is what it is.  Somehow I ended up following and reading a lot of blogs that involved children with Down’s Syndrome.  I think it’s because it’s the closet thing I can get to what Taylor has.  However, the only thing that really puts her in that group is an extra chromosome.  Taylor’s just happens to be #9.

Trisomy 9p is one of the rare chromosome syndromes.  So it’s not like I’m going to find a lot of bloggers with a child with the same diagnosis.  Then there is Taylor’s age.  She’s 21 years old.  She wasn’t supposed to live this long and I’m thankful every day that she’s here.  Yes were are dealing with new and serious health issues, but I’ve had her for 21 years.

I’ve tried to help out the blogs I follow with things I’ve learned in the long time I’ve been mom to a special needs child.  Sometimes I think I come across as a “know-it-all” and I am not. 

But I also realize that things change so quickly in the special needs world.  What was once standard procedure when Taylor was little is now considered outdated. 

Now I’m running into issues that never crossed my mind when Taylor was little.  The fact that my being her mother did not automatically let me make her medical and life decisions when she turned 18 was a surprise to me.  Spending over $1300 just for a court to say that my profoundly, developmentally disabled child was not capable of caring for herself therefore needed a legal guardian & that I needed to be approved for that role, shocked me. 

After 21 years of caring & loving my child, I now needed approval from the state?  Yep, you do.

I would give anything if I’d had access to computers & blogs when Taylor was little.  But that was in the “old days”. *laughs*  Please don’t think I feel sorry for myself or anything.  I just needed to get this out.  I think it was what was keeping me from blogging regularly and I miss that.

Also, if I follow your blog, please know that I always read them.  I may comment very infrequently but when I do, it’s because I feel like I can help or at least add to the dialogue.  I want my comments to be more than “oh, that’s a cute pic”.

I think I’m rambling now.  That’s what happens when you just start typing and letting all your pent up thoughts just blurt out with typed words.

And just because she’s cute, I’ll leave you with a picture of the reason I do blog…