And everyone told me Trev was exactly the kind of kid EI was in place to help.
But deep down in the whisper region of my heart I felt...well...
...guilty.
Especially during the time he was seizure free. Because even though he wasn't making forward developmental progress steadily or quickly. He was moving in that direction. More turtle-ish. Less hare-ish. But he was certainly in the race.
And it left me feeling like a thief. Stealing services from families that truly needed them.
In my pursuit to assuage the guilt complex I even asked to cut services at one point. At the time Trevy was only receiving OT, PT and ST once a month. But it made it easy to slash a therapy because I hated our first OT. I dreaded her visits. She was constantly talking about how she worked with kids much more affected than Trevor...and I always ended up feeling even more guilty by time she left. Coupled with her hinting that she felt Trevor's left handed-ness was a figment of my imagination. I eventually came to a place where I felt she didn't believe Trevor needed her assistance. And I didn't think she was any anyway. In hopes of easing the mommy guilt I cut OT.
Only to be assaulted with guilt from the other side. The mommy warrior side that screams I shouldn't care what anybody thinks. I should reach...without hesitation...at any possible tool available to give Trevor a stronger foundation. Knowing that his seizures although not clinically present...were there...simmering just under the surface. And having no idea how it was impacting this very important time of foundational discovery.
I've never really said any of this outloud before. Not even to Jonathan. Because the truth of it is... I felt shame on both sides. Shamed that I secretly wanted more services when I know how well Trevor is doing. And shamed that I allowed myself to care about looking greedy.
It has been months of inwardly working through these ever changing layers of emotions. Months of learning how to fight the guilt...and be comfortable with not just giving Trevor tools...but asking for them. Months of coming to terms with the truth that Trevor does qualify for services. Even if his needs are less comprehensive. Months of learning how to express dissatisfaction. I actually hate potential confrontation. And months of growing into a place where I'm okay with Trevor growing into who he was Created to be. And coming to peace with the fact that we have been Placed here...with access to these interventions...to accomplish that very thing.
And even though I have no doubt this will be an eternal conflict for me. Because it's the story of my first born life. Which you do know that first-borns are drawn to perfection. And destroyed by less than. Right? Or so I learned in Psyche 101. Course...J (who is also the eldest in his fam) & I once read that two first-borns should never marry! After it was too late! ::smile::
Anyway...I'm happy to report that when our EI case manager approached me last week about not just increasing Trevor's services but actually enrolling him in a Special School...
without any hesitation...
and not even a hint of guilt...
but instead a heart-beat of excitment...
I immediately...emphatically...shame-less-ly...said YES!
starting next month Trevor will be attending a 60 minute program. At a special school. Taught by five therapists. And three other kiddos...matched with similar special needs.
In addition to his now 1x PT and 2x monthly ST and OT. With a new therapist. Whom I adore!
9 comments:
When it comes to EI, you can ONLY think about what is appropriate for Trevy. You can't think of the other kids. I know, I know, easier said than done!
I hope Trevy flourishes in the program. Connor LOVED his special time at program.
Second what Jen said!!
Don't ever let anyone make you feel like Trevy doesn't deserve help because he is doing well either. Can't believe that OT made it a pee pee contest! Obviously, he must have showed some deficits in the eval, or he wouldn't have qualified for service. It shows the therapy is probably helping if he is overcoming those deficits.
Kaylee is in therapy 4x's a week and I don't feel the slightest bit guilty about it. If they didn't think she needed it, reg center wouldn't be footing the bill!!!
So happy that he will be in a spec school! That sounds great :)
Danielle,
Thank you for sharing your thoughts. Today I really needed to read your post. I am struggeling right now with major guilt, and so I can relate to what you are saying. I feel guilty because right now I am devastated by KC's problems. I feel like a jerk because I am crying over what probably seems like small potatoes to some of the other IS Moms. I feel so conflicted. I know we have connected on this level before and I am so greatful that you are a part of my life. I don't have any words of wisdom today, but you have helped me to not feel so alone with my guilt, and I hope I can do the same for you. And for what it's worth, despite the fact that I completely get where you are coming from with the guilt, I totally agree with Jen and Shanna! Trevor deserves his amount of services as much as any kid. I hope the school is awesome for him as I suspect it will be!
Love Karen
Make that the Four Agreements!
We are here to care for our children first and foremost and you are doing a fantastic job of it!!
Funny how this post should come about today, bc this is something we are dealing/struggling with. It was just this week that the therapies FINALLY got in touch with me and we're waiting 2-3 more weeks for our initial appt. Finally! Yay! And we have been going in circles to get assistance for our son..."we don't treat children that young..." It's been frustrating. But in all of this I often find myself second guessing...he's not that bad off/it's not that bad so we don't need...but it is and we do and we will...God willing. Thank you for sharing your "un-filtered" thoughts! They touch my heart, inspire and confirm all at the same time!
Congrats on the school placement for Trevy. Peer friends will be wonderful for him and maybe some new mom friends for you who are in similiar situations...that could be good too.
Yay for the therapies! Yay for Trevy!
M
Danielle and Jonathan and grandkids, Love you all and remember you are doing the right thing. Keep your eyes on the goal. Love that hat of Trevor's. Love you all bunches, Bibi
It's so funny how silly we are! lol I'd give exactly the same advice to another mom struggling with this issue...but somehow applying to my own isn't as easy! And that's why I mentally kick my own butt! But I'm definately more convinced than ever that the therapy is making a difference for Trev...and he NEEDS it...and LOVES it! So I'm really excited about the new school.
It's a growing process. Mommy-hood in general. But Special Needs Mommy-hood in specific. I hope I'm growing!
Actually...Trev's PT said sometimes the kids that are in the middle...like Trevor...are the ones who really need the extra help but are easy to overlook because they seem to be managing. It was nice to hear validation from a professional...you know.
Anyway...
...danielle
When Marissa was 4, it was determined that she needed ST and OT help. For the ST, I never questioned the decision since Marissa did no more than babble and point at what she wanted. Sentence structure was non-existant for her. OT, since I wasn't sure what this all entailed until it was explained at the evaluation itself, I was somewhat doubtful. Until I watched her, in their terms, fail at task after task did I realize how delayed she was. All along I thought she was a genius, she was able to do jigsaw puzzles meant for 10 yr olds without a problem. It was the simplest of tasks that she had issues with, jumping, kicking a ball that was rolled to her, threading a string through a bunch of holes, stacking blocks exactly as shown. I was surprised and saddened that what I thought was my brilliant daughter really wasn't even on the same learning level as kids 2 yrs younger than her. I thank God for the intervention of the doctors and therapists.
u go gurl!!! :0)
i'm a first-born too...can u tell?! ;0)
xoxox,
sharon
I loved this one, Danielle. It rang so true for me as I'm sure it did for many. Austin was pretty close to age appropriate in the beginning of therapy and I settled for once a month sessions because I felt too guilty to ask for more...even though many parents expressed how critical EI was and the more the better. I finally said "enough" with the guilt and asked them to quadruple the sessions! Bottom line, you are not alone...and now I know I'm not either!
Holli
(btw, love the pics!)
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