Friday, October 17, 2008

So, how is Ross doing?

Thank you all for the many beautiful emails and comments sharing in my joy over Riley's exciting evaluation results. Many of you naturally asked about Ross' evaulation, and about how he doing in terms of his delays. The overall answer is that he is making fantastic progress in some areas, and having some more substantial trouble in other areas.

His gross motor scores were thrilling and showed absolutely no delay! He is still wearing a DAFO on his right leg only, and he needs to keep practicing walking up and down steps, jumping, and general proprioceptive awareness. However, he is moving around and using all of his limbs just as he should be, which is a huge accomplishment for a kiddo who has CP and who use to have extremely severe torticollis.

His fine motor skills are coming along well, also. Actually, this week he had decided that he loves puzzles and has begun completing a ton of different puzzles on his own. He also feeds himself with a spoon very well, when he isn't using it to spread various foods in his hair.

Ross' evaluation was actually a couple of weeks ago, and I have held off on posting about it, because I have also been holding off on sharing something else that has been going on with him related to his evaluation results. Originally, I hadn't planned to post about this at all, because I was in an emotional tailspin and couldn't see or breathe each time I thought about it. However, I am much more "ok" with it all now, and ready to share. Your comments and emails have always been so supportive and kind, so I feel that I can post about what has been going on.

Ross has officially been diagnosed with Pervasive Developmental Disorder (PDD) which is on the Autism Spectrum. He is having difficulties with both receptive and expressive language, auditory processing, social and interactional skills, appropriate play skills, and sensory issues. He was diagnosed in August, and started receiving wraparound therapy in September. He is also still receiving all of his Early Intervention therapies, so he has quite a lot of therapy each week. In addition, he has had three private evaluations at The Children's Institute for speech, auditory processing, and sensory issues. Each provided more information about what we can do to help Ross, and each reaffirmed that we have already done all of the right things to meet his needs.

As an Autistic Support teacher, I have spoken with many parents about their child's diagnosis of PDD, and helped them to understand what it means. I have helped them to process through the stages of being sad, confused, angry, and afraid for the future. I have stressed to them that this diagnosis simply means that their child will need more intense therapy to learn to speak and interact with others, and that it is not a limit or restriction on what they will accomplish. I have explained that they should always assume that their child will be able to do whatever they want to do, and that this diagnosis will not limit them in any way. Yes, that's what I always said as a professional.

As a mommy, this diagnosis was a blow to my heart, and to my soul. It was far easier for me to hear that both of my sons had CP, as a result of their premature births, than to hear that one of my boys had a disorder that might impair his ability to interact with the world. I spent several days crying, several nights drinking wine. I cried to my mom. I got super busy and preoccupied with setting up wraparound for Ross and focused on the practicalities of meetings and scheduling, so I didn't have to think about my emotions. Then, I cried some more. Finally, I went to the one person who could really answer my questions about what the future would bring:

Ross. That's when I realized that nothing is going to stop this little boy from doing whatever he wants to do in life. Ross is barely two years old and has already overcome so much, and with much aplomb. He survived a pregnancy that was threatened constantly, where his placenta wasn't working correctly from 9 weeks on. He was born 2 months prematurely, weighing only 2 lbs 8oz, and yet his lungs worked perfectly and he screamed for food and gained weight like a champ in the NICU. He had severe torticolllis and plagiocephaly, and had to wear a helmet for 7 long months, and yet has no residual effects. He has CP and was delayed in all gross motor areas, and is already completely caught up and walking independently, wearing just one DAFO.

This is just the next step for him, and he will climb up and over it and amaze us all.


candice said...

You are such an amazing mom with so much strength. Ross and Riley are so lucky to have you as their mom!

Becky Adrian said...

Melissa - I have not posted for a really long time but I always read to hear news about the boys. You are such an amazing Mommy, teacher and friend and as I read your news and where you are with it I am impressed with your strength. I know that with you as a mom and Riley as a brother Ross will amaze us all with how well he will do now and throughout his life. Much love Becky

lys said...

You did a beautiful job with this difficult post. Hopefully it was cathatic in some way. Rossy will read it one day and say, "See Mom, I climbed all those big steps you were talking about..Now can I PLEASE borrow the car?" Love you all!

Emmie (Better Make It A Double) said...

What a beautiful post about a difficult topic. Obviously, the boys are lucky to have you as their mom, but it sounds like you're awfully lucky to have them as your children too.

CanCan (MomMostTraveled) said...

Your boys are BEAUTIFUL! I know they have made you so proud and will continue to do so as they grow!

Thanks for visiting my blog today.

Erin Tales said...

OMG. This brings tears to my eyes.

I was having a conversation with my mom on autism the other day. And she mentioned that she watched a based on true life movie that might really make your day. I wish she would remember the title. Let me ask her again. It was about a single mom who had two sons with autism and what they accomplished was more than other people (not the mom!) ever imagined. The mom always knew who sons would be great. I am explaining it so badly. But it sounded great...

Well :hugs: and I am sure you will have more good news to share.

Cybill said...

I "mourned" too when Nixon was first diagnosed. It was a really tough time.
SInce then I have come to realise that he is the same little man now as he was before the diagnosis. And with speech therapy he is becoming a bit more verbal every day. I am glad to hear you made it out of the "mourning" period and I'm sure that you will see alot of improvement with therapy!

Cindy G. said...

You said it beautifully. Keep looking to Ross. I just know he will continue to amaze you! Thinking of you. Love you, Cindy :)

Laura said...

You are a wise wise mommy. The younger they're diagnosed, the better the chance for a positive outcome. Best wishes to you and your family.