Denial, Acceptance and the Future...

Ponderings for the day:-) This post may make no sense, but I need to work out these feelings I have right now:-) This post is also NOT written as an "I'm giving up hope" type of post.

We had our follow up review meeting from the psych assessment that we had done about a month ago. This was the testing that they did with Faith to look at her visual, auditory, speech, understanding, executive function, social behaviour, gross motor, fine motor etc...(when I get the final report I can be more specific).

It is kind of like a road map to see what Faiths strengths, weaknesses and the areas we need to work on are. It also shows us how to understand her and how to work with her to help her succeed in her life.

Over the past few months I have been seeing things that I was concerned about. I saw that there were delays, in many areas...I saw that she wasn't quite in line with other kids her age...and yes, I know that every child is different...

Knowing that this report was coming from a third party, who had never met Faith or us in person...but study and analyzed all the testings, screens, and videos from her last testing...made me feel better...that she wouldn't be swayed by our emotional attachments...it was a neutral assessment.

What we learned from this review was that we know are kid pretty darn well. And now, when people try to argue that she is "fine" and "every one is different" and "she is pretty average"...I can throw a report at them...not really, but it is documented in that report, that she is significantly delayed...and there is poor development in many areas...

I could have told them that - but it is nice to know that people can see that I have not been making up symptoms and concerns...it is our reality.

Faith placed mostly in the 1st -4th percentile for every area tested. Her strength was gross motor, which she placed in the 12th percentile. The average is between 25 and 75 I believe. Faith is SIGNIFICANTLY delayed....

Her organization skills are non existent, her memory is almost non existent, she cannot focus on one task for very long and "passively resists" doing things she doesn't or can't be bothered to do. She doesn't have good grasp of pencils and crayons. Cannot complete 2 step instructions that are not related to each other (so, Pick up that ball and put the car in the box, as opposed to pick up that ball and give it to me). She doesn't sort very well...etc...it goes on and on.

Now, before the comments come that say...she is just at the lower end, it will catch up, she will be fine or my kid was like that...you have to understand that she DOES have a brain injury. With this report I have finally come to an acceptance, even greater then before...that she DOES have a brain injury.

The delays that she is showing are CONSISTENT with the type of brain injury she received. This was EXPECTED to show up...we were told at birth, we would start noticing things around 18 months and on...we didn't believe them at the time...

Faith has overcome great odds. She should also have CP, but does not. She shouldn't be able to walk at all - She does. She is an amazing little girl who has so much strength and will to live that she will continue to blow peoples minds away!! She is going to be that kid who the docs all want to see and learn more about the brain from...She will be and has already been such a light in the medical community...so, I am NOT giving up hope for her...because we have already seen the impossible become possible...

However, I am looking at reality, and planning for the best for her future. We are looking at our options and how to receive as much early intervention as possible. We are talking about making some extremely hard decisions to make life for her easier and successful.

We have been told now to be prepared for learning disabilities. We have been prepared for behavioural problems and therapy. We are being referred to many new agencies now, because her struggles have become concrete. I am glad for where we live, I am glad for the services we have available. I am glad for God's hand and guidance and direction.

We don't know where we will be when school starts, or where she will be with her development. We may be able to send her to school with absolutely no issues, because the possibilities are endless...but we also may need to be prepared to fight for her, to fight for the right avenues to take, to fight for the extra support she may need.

It also opened my mind to think about the long range future...what is going to happen with her. I haven't really thought about it, because I was living in some sense of denial...but now it is concrete and what I have been seeing is correct. Is she going to be able to manage her own house, is she going to be able to live on her own...how about grocery shopping, or remembering to keep appointments...even something like organizing a house, or a list, or anything...

After the review I had an interview for the job I will be starting soon. They had changed the location to take place at the assisted living office...the organization that I am applying at supports almost 20 individuals to live on their own. They help with shopping, organizing, cleaning, cooking, making schedules, remembering appointments...whatever is needed...

I saw, for the first time, the fact that no matter what comes down the road for Faith, there is a successful future in store for her...she will succeed in life, she will continue to touch lives and make decisions...

I am thankful that I have gotten to this point...it was hard to hear it all, but deep down I kind of knew and expected this day to come.

So, we continue this journey of unknown turns and forks every few miles...and we are enjoying the scenery all along the way:-)