Wednesday, January 30, 2008

Sharing my full plate

Well, I figured it was about time to share with all of you the things we have been going through lately. A few months ago, I posted here about how we had a lot on our plates, and were going through a rough time and needed prayers. So, now that we have done the Q & A with all of our family members, I thought I'd share our journey here. This will be lengthy, so make sure you can sit down for a few! ;o)

A few months ago, I was at a session with one of my regular clients. I have been taking portraits of this little girl pretty much since my business opened. She is SUCH a doll. :o) I noticed at this session that she was talking SO well, and I started to talk to the mom about it. She told me about a state program that services children who have any special needs. It can be something as simple as a slight speech delay, as was this girls case, but they also serve children with autism, down syndrome, mental retardation, etc. I asked a ton of questions about the program, mainly out of curiousity at that moment. I'm a talker after all! I left the session and didn't think much about it. A few days later, my client contacted me to offer up the info for the state program and ask if there was a reason I was asking about it. I lied to myself by excusing it as gathering info for someone else. While this was slightly true, it was not someone else that was in the back of my head. It was Mason. Our 2 year old son, he is amazing in every way. He has always been an independent child. Didn't like to cuddle or snuggle, was content to be left alone. When we were around crowds, he would find his way to an empty and quiet space. But he was perfect, in every way. We had always joked, since he was born, that he had middle child syndrome. lol But there was just something "off". So, I decided to call the PRIDE ECI program she referred me to. We scheduled an evaluation, and suddenly the pit in my stomach grew. Was this real? Was I really facing an evaluation for my own son? I kept telling myself, the evaluation is free, and it won't hurt. They'll come out and evaluate Mason and tell me he's fine.

So, they came. And I answered a billion questions, and they said they would need to continue the evaluation. They were going to bring out a Speech Pathologist as well, and it would be a complete evaluation. The day of big evaluation came, and my husband and I answered a million more questions. They watched Mason, talked to us about his behaviors, habbits, strengths, and struggles. Throughout the questioning process, my pit grew larger. As I sat in my living room answering these questions I often never considered, it dawned on me that thinking there wasn't a problem was wrong. See, to us, he's perfect. There's nothing WRONG with him. He's amazing. He's so amazingly handsome, he's sweet, he may be strong willed - but so am I! And at the end of it, they sat down with us to discuss their findings. There was something different. Mason was delayed in every area they evaluated, and I couldn't believe it. The thing is, I KNEW it. I knew it. But hearing it was the biggest blow. There is so much controversy on how you are supposed to "feel" when you are dealt these cards. And I am not here to argue with those emotions, I am just here to tell them as I felt them. It made me sad. Knowing my child would struggle, broke my heart.

They told us Mason scored the following:

Physical Development - 24 months
Speech - 21 months
Cognitive - 19 months

And he was 31 months old at the evaluation.

We sat down and designed a Family Service Plan. The ECI program, in addition to testing, also provides therapy for these children. If you have insurance, they will bill them and you pay nothing. If you do not (which is crazy by the way!), they have you on a sliding scale that is income based that is amazingly cheap even if you make a ton of money! We have wonderful insurance, so we pay nothing. We set Mason up to receive therapy through them once a week, alternating between speech therapy and developmental therapy.

So, here we are months later. Months into treatment, and here is what we know as of late. Mason has a global developmental delay, meaning he shows delays in about every area. He has Sensory Integration, and also an Audio Processing Disorder. We have spent the last months doing independent occupational therapy once a week, as well as speech or developmental therapy once a week. And endless hours spent finding doctors who can assist us in the diagnosis. It's amazing how hard it is to get proper treatment, and find qualified doctors. Harder than it ever should be. It's really sad, especially with the current epidemic of autism we have. And insurance companies, don't make it any easier. OOOOOH no, they make it as hard as you can imagine. But after months of work, I have found what I hope to be a great team of doctors. We meet his psychologist tomorrow morning, she will meet with us to talk about his testing. A psychologist (or developmental pediatrician)is who generally does these types of diagnosis. We will also see Mason's new neurologist next month! We scheduled that appointment in November, so we are SO excited that it's almost here. In March he goes in for his entrance evaluation for the school district. They will determine what type of program he will need. (the ECI program only services children up to age 3, thereafter the school district takes over if you choose.) We already know he will qualify for services, and are excited with the possibilities they have for Mason. The downfall is I will literally go from having 3 kids in the house everyday (but preschool days), to Reagan starting kinder next year and Mason being in the PPCD (preschool program for children with disabilities) likely 5 days a week. Granted Mason's days are half days, but still! What are Brooklynne and I going to do with ourselves?!?! lol

As of now, we don't know the reason behind the sensory integration, global developmental delay, and auditory processing disorder. But we hope to know soon. Life is challenging, and has taken a turn we never expected. But we adore our son, as I mentioned before he is perfect and amazing in every way. He's differently-abled. And we hope that with the treatment he is currently receiving and the findings the doctors have, we will be able to assist him in a successful future. We have a very long road ahead of us, and really don't know what the future holds. We don't know how if he will ever "typically develop". Mason may always struggle with some things, but we are already on the right path to endless possibilities. We are so blessed to have him, he brings such joy to our lives. He is so much fun to be around, and if you've ever met him (as most of you have) his spirit is just amazing to be in the presence of. We are glad we have the cards we were dealt. Sure things could be easier. But this is who he is. And who he is makes me proud, and thankful.



If you've made it this far, bless you for reading. :o) Come back tomorrow, we're posting Super Bowl Recipes!!! Thank you to everyone who's sent me one, but I want more! Send them on over!!!

4 comments:

Deborah said...

i love how positive you are- God didn't deal you a raw deal! "He doesn't make no junk" Thanks for the reminder that we are all precious in His sight and that every child is different and oh so special! I know your road may be more challenging, but i believe you guys have the faith and the perseverance to make it! Hang in there!

Megan said...

hugs, luv & prayers for y'all!!!

Kim said...

Oh, Bethany, how wonderful it is to hear your perspective on your new journey with Mason. I've been teaching children with Autism for many years now and I must tell you that I can totally see God's strenght and wisdom in you. You are years ahead where parents with newly diagnosed children are... As wonderful as you are at photography, I wouldn't be at all suprised if God called you to speak to other parents of children with disabilities. With God and his family there to support him, Mason is going to be more than just fine...he's going to be GREAT! I'm not just saying that...I mean it.

Susan said...

Perrin is in PPCD and this is his second year. Therapy does WONDERS!!!! It really helps out and he really TRUELY enjoys going to school and being with other kids that understand him and not making fun of him. If you need anything or have any questions about anything, let me know. Oh and I LOVE they differently-abled comment. I tell Perrin that when he gets frusterated at not being able to do something!