Thursday, February 17, 2011

Continued Frustrations


Excuse my self-indulgent venting for a post. I feel like I've been a hermit for quite some time. I rarely even see my sister anymore, even though she's my best friend, and lives just 4 miles up the road.

Part of my frustration comes from the fact that I feel like I shouldn't be frustrated. Most parents of children with special needs are caught off guard, are not prepared for what they are handed. We knew going into this deal exactly what we were in for, and we jumped in anyway. And let me be VERY clear - I wouldn't change my mind ever. I cherish Mason so much, and cannot imagine my life, my family without him. HE is NOT the source of my frustration. My frustration is with "the system" that makes it so ridiculously hard to get what he needs.

I started a fabulous new job in October that I continue to love. However, working Monday through Friday makes appointments very difficult. This is made more difficult because none of them are close to where we live. That would be too easy. Mason's preschool is 30 minutes away, his PT is 50 minutes away. Any specialist we see is 1.5 hours away. We try to get 7am PT sessions which means that twice a week, Mason and I leave the house at 6am, drive 50 minutes to 1/2 an hour of PT, drive back 50 minutes to daycare, and then I drive back 50 minutes to work. I'm tired before I get there. We are still struggling with the orthotics issue. We have them. Our PT is happy with them, but the school's PT, and OT are not happy with them. Our PT finally said, just sign a release and have them call us to discuss it (I love her).

Tomorrow we will finally meet his case manager. She's been his case manager for 7 months, and has never met him. I finally demanded it. She wanted to simply jump to his IEP, and I just said that she needed to meet him first. I wanted her to have some idea of who she was working for, what our views are, and how amazing he is.

The IEP - ugh. This agency is not my friend. Their communication is just awful (indicated by the fact that it took 17 phone calls to reach the case manager). I was TOLD (not asked) that I had to attend a meeting on Feb. 28th to review his PT eval. I asked if there were other options, and was told no, that is the only time that everyone could meet, and I could do it by phone if need be. I called the PT who did the eval, and told her that it was just a horrible time, but that I didn't want to do it by phone, because I wanted to meet her. She said the SHE couldn't be there either, and they wanted her to join by phone. So, the only people AT the meeting would be several people who had NEVER met my son. PT called the office, and although the second date and time is even less convenient for me, at least the two people who actually know my son will be in the room. THEN, I find out (by recieving a letter in the mail) that this meeting is not to review his PT eval, this is his IEP meeting. And the date is not convenient for any of his current providers (speech, OT, teachers, 1:1), and, in fact, they were not even told about it. They only found out because the PT consults with the school, and mentioned it. So, again, we are planning meetings around people who have never met my son, while the people that work closely with him seem to not matter at all. I have been warned by providers that this particular office of the agency is notoriously difficult and not child-focused. So, I'm angry going into this meeting, and the case manager will hear all about it tomorrow.

In addition we have had Pulmonology appointments, x-rays, and modified barium swallows, an asthma diagnosis and 2 new meds (that insurance will only pay $2 of each $40 prescription). All of this eats away at time I should be at work. My employer is nothing short of amazing and patient with it all, but I feel terribly guilty, especially as a new employee.

I feel like my real full time job is to argue and fight, and negotiate, and it's really exhausting. BTW, still no wheelchair. He is heavy and awkward, and my back could really use a break.

Now, while I am complaining about all of this, Mason simply goes from provider to provider, with a big smile, doing anything they ask, and making amazing progress. He is super friendly, and not much bothers him. He enjoys pretending to call the police on people, usually if they won't give him his way. I admire him for his flexibility. The other day, my mom looked at him and said, "Mason, you just blow me away with how well you're doing." He grinned, blew a big puff of air in her face, and repeated, "I blowed you away." I love that kid.

7 comments:

The Pfeiffer Family said...

This sounds SO frustrating! I am sorry you are having to deal with all of this. Mason, is blessed to have a mama and family who love him and will push through all of these issues to get him what he needs. Good for you in pushing to have his case worker meet him in person. I agree, it is so important for her to SEE and MEET who she is working for. What a trooper Mason is. You both must be exhausted. I love his great big smile. When the days are hard, I bet that smile alone makes it ALL worth it. Hang in there! You are doing a great job.

April :-)

Traci said...

I am so sorry for all of the frustrations! I will pray for all of you and the IEP. You're an amazing mother raising an amazing family! Thank you for sharing your story.

Praying for you - Traci

Julie & Patrick said...

I am so sorry for these frustrations. Just when you think some stress in your life is relieved, in finding a new job, you are dealt another hand of frustrations! It seems as though the old, I'd like to speak to someone in charge, scenario is not going to work in this case either. Although exhausting, you will see reward in your efforts...however small the steps you are taking may seem. How wonderful it is to have his great fun-loving personality to come home to at the end of the day!!

Best of luck...I may be needing some advice in the "fight for your kid" arena soon!

Julie

Kristi said...

Oh Kristy...I'm so sorry. Please call me anytime for vent sessions, or if you want to join forces and take the cause straight to the big dogs in D.C. ;) Hang in there! I know the mama bear in you will win this one!

Peter and Nancy said...

The stamina you're showing is just amazing, Kristy. I truly admire the way you're facing the everyday reality of getting up early, making phone calls, dealing with frustrating people . . . it speaks so much of your strength and your love for Mason. Hang in there -- I hope that Amanda and Kristi and some of the other 'been there' moms can give you some ideas.
Love to you,
Nancy

Not By Chance said...

I knew Mason Probal was a very special kiddo the moment I met him!
I am so glad YOU ARE HIS MOMMA!

We can't wait to see you. Call me anytime!

Love,
Susie

Emily said...

Kristy, I just am in awe of your stamina and dedication. Go you!! I read your blog and felt one overwhelming emotion: grateful. Grateful that you are willing to fight so hard and never give up. And grateful that at the end of the day, when you are tired and frustrated, you have Mason's sweet face to look in to and remember what's worth fighting for. I am sending you big HUGS! Emily