Saturday, November 10, 2012

Ty's Diagnosis

So I haven't posted anything about Ty's new diagnosis because I was waiting to hear back about the funding that started all of this.... 

But I will just explain since we are still waiting to hear. 

  Ty has been a very difficult child from day 1. I didn't know any better since I was a new mom but when Levi came I started to realize that all kids aren't like this. All kids don't  struggle with eating and sleeping like he did (does). By the time he was 18 months old I started to realize he had some pretty severe speech delays and soon after he started Early Intervention through Kids on the Move. We had a Developmental Specialist come to our house and eventually progressed enough that he was ready for a Speech Therapist. Since then I've advocated for him to be involved with one of the preschools (Bridges) at Kids on the Move and also had an Occupational Therapist start to come to work on his sensory and eating issues. I still just assumed he was a tricky kid that needed some help.

About the middle of Oct there was paperwork given to the parents about this new government funding that they had just received to provide 20 hours/week of ABA therapy for autistic kids- for free! I thought too bad Ty isn't autistic and could qualify for that! Right now he's getting 4  hours week for too much money but it's helping soooo much and we HAVE to do whatever we can now to help him. The earlier the better. There was also another Medicaid grant that was happening at the same time. Again, I thought, too bad! Ty would benefit so greatly!! I talked to his teachers to see if there was a chance Ty could be on the Autistic Spectrum. All of them weren't sure but definitely didn't completely rule it out. This was on a Tuesday afternoon and the deadline for all of this was Friday.

To make a very long story short, through a bunch of tender mercies and small miracles, we were able to get Ty tested Friday morning and hurried and got all the paperwork submitted by that afternoon since Ty was diagnosed as being on the Autistic Spectrum, specifically with PDD-NOS (Persistent Developmental Delays, Not Otherwise Specified). What this basically means is that yes, he has some issues that need intervention and therapy (speech and communication, mild behavioral issues (tantrums), and sensory issues (specifically hypersensitivity to oral input)- but not enough issues to classify him as fully Autistic. He is very high functioning and with the proper early intervention he should be able to mainstream and be just fine. However, early is the keyword there. For normal kids, ages 2-4 are pivotal for learning to begin with. 10x more so for autistic kids.

It was difficult decision to get him diagnosed (that had to be made very quickly due to time restraints) because the actual assessment and diagnosis cost $400!!!! Ahhhh!!! But with that diagnosis we now qualify for at least $37,000+ worth of therapy that we'd be getting for free. And if we don't get that one then we are looking for similar programs and preschools that again, would be saving us thousands of dollars and most importantly helping Ty. Initially we weren't even sure he'd get the actual diagnosis and then we'd be spending all that money for nothing. But there wasn't any question to Dr. South, who made the diagnosis. He definitely was on the spectrum. Very high functioning, obviously, but still on it for sure. And we all know the spectrum is a HUGE continuum which can make it hard to diagnose kids and catch it early. So I was grateful that we did catch it early, since Dr. South said rarely does he diagnose kids as young as Ty at 2 years and 5 months- which is sad. He said ideally everyone needs to be diagnosed at 3 but his average age of kids that he tests is 10-15 years old. He was testing an 18 year old after our session was over. :(

Once we found out we hurried and texted all of our family and close friends to ask if they would be willing to fast/pray for Ty that he'd be chosen for these government fundings. There was only a small number of kids chosen and I knew we needed a miracle. I was so touched by everyone's willingness to help and think of Ty. His name was on the prayer roll in temples all over the surrounding states. :) Seriously, I was so touched for everyone loving and caring about my baby boy.

So, sadly, no news yet on if Ty was chosen for the program(s). I'm dying to know since it's been a while but we shall see. Patience is good for me to learn. However, I know that whatever happens, it will be for our good and we did all we could do. If he's chosen then that's amazing but if not, then it must not be for him and we'll continue to find what he needs and help him progress, no matter what the cost. That is why I have decided to stay part time next year to help pay for the things he needs. It's more than worth it to me. No question.

People have asked me how we've dealt with all of this and honestly, it's just another small miracle that can be added onto the list. I am absolutely fine with all of it. It doesn't change my Ty Ty in the least bit. He's still the exact same. Now we just have more doors opened to us and hopefully, more opportunities for him. It was almost empowering since I now can prove to the world that yes, he is and has been a hard kid!! And yes, he does need help and he needs it NOW. In the last 6+ months he has progressed greatly and I'm excited for that progress to continue and possibly accelerate with more interventions and therapy. The day of his assessment I wasn't nervous, scared or surprised. Heavenly Father calmed me and I was totally at ease. Also, what was neat was that every single time I prayed about it (when all this was going on) I felt the spirit SUPER strong over and over, which (for me) doesn't happen all the time. So comforting and I KNOW that Heavenly Father loves this little boy and is aware of his needs and will help me, help him reach his full potential.

So my next major long-term goal right now is to get him ready for (regular) kindergarten. I have until Fall 2015 :) Hopefully I don't have to hold him back because if I do that means him and Levi would be in the same grade and I don't want that. But we'll work really hard right now and just see what happens. Right now he is on some waiting lists for autistic preschools. It's just too bad because there is such a need for all of this yet such limited funding and too many kids!! Ty is #120 on one of the very best preschools in Utah called Giant Steps (which is free!). Right now he is projected to get in by Fall 2014. But hopefully sooner than that!!

The other day when I was very frustrated and about to lose my temper with him (again), I got an overwhelming feeling of pride- the good kind of pride (I hope? :) towards him. Suddenly I was soooo proud of HIM! I realized how much he's overcome so far and what he will continue to overcome! Instead of selfishly thinking of me, I thought of him and how hard this has to be on him. To not be able to view the world as we do and not be able to fully express yourself when your cognitive reasoning and thought process is WAY ahead of your mouth. I would be beyond frustrated as well. I realized that was a lesson Heavenly Father needs me to learn from him and remember. And use it to control myself. Not him.

One last thing I wanted to mention is my sweet little Levi. I now know why he was sent so quickly after Ty. He is here to help Ty- I have no doubt in my mind as to that. The other day when I was at the temple, it suddenly clicked and made perfect sense to my heart and spirit. To this day I still have NO IDEA how this child came into existence (yes, it's true- dates/numbers/birth control do not add up with this little boy!) which just further testifies to me that Heavenly Father sent him specifically to us at the specific time he was needed and not according our natural-man time tables. All of his therapists and specifically Dr. South, mention what a huge role Levi is playing as a constant, full-time peer model for Ty, especially as he is starting to catch up to Ty in some levels. As I was thinking about all this I could just imagine them talking to each other before coming down to earth about how they were going to help each other get through this earthly life. It brought tears to my eyes and comfort to my heart, especially the times I see them laughing and playing together. I know they are going to special buddies their whole lives. :)

Anyways, the purpose of writing all this is to remember Heavenly Father's hand in all of this and how He continues to lead and guide us- literally- step by step. A year ago I hadn't even heard of Early Intervention and look where we are now. Kids like Ty (high functioning) are lucky if they are recognized with ASD (autism spectrum disorder) by elementary school and Ty has had therapy coming close to a year already! I know he's going to be just fine in the end- do well in high school, go to college, go on a mission, get married, etc.- but that just means a lot of hard work to do now.

So that's just what we'll do. :)


Karina said...

I loved reading this! I have had 3 children work through speech delays with early intervention programs in 3 different cities. I think it really makes a huge difference for these little guys to have it. Good luck to Ty!!

tricia said...

I hope you hear back soon about the grant and get a lot more FREE therapy. What great parents you and TJ are to be so diligent and get Ty the help he needs. We are still keeping you in our prayers and hope it will all work out so he can get the extra help now.

tricia said...
This comment has been removed by a blog administrator.

smiles and tears from me
you are a great mom doing great inspiring things
good job, loved the last part about baby #2, what a blessing!

miriam said...

I was thinking the same thing about Levi the whole time I was reading your post:) The Lord does like to micromanage our lives sometimes, and to our benifit:) Tear-jerker for sure. We never know the adventure we are jumping into when we embark on parenthood.