The Joy of Standardized Tests and Your Developmentally Delayed Child

I recently had to collect some of Finn's old standardized test scores to send to the Department of Persons with Disabilities.  I did not to look at them because I have learned over the course of last three years, that they don't mean anything to me.

Finn had his first standardized test at age 6 months.  Sounds crazy, doesn't it?  Early Steps did the test and the two sweetest ladies worked with Finn and me.  At this point, we knew Finn was delayed, but at such a young age, its tough to prove it as milestone ranges are large.

We actually wanted Finn to "fail" this test because we knew he was delayed and "failing" the test would mean that he would get services.  Of course, I would prefer that he had not developmental delays and we would not have even had to take he first step and get him tested, but since we were there...I hoped he failed (but not too badly).  He ended up barely failing.  I think the ladies had to help him fail and to them I am very grateful. 

Finn has had multiple evaluations and tests since that time and my best piece of advice for when your child is going through these tests and you are handed the results...don't get down.  Take it all with a grain of salt.  If your child is improving over time...that is what matters.  We have had wonderful therapists do the evaluations right before certain cut off points to make sure Finn scored lower so he could continue getting the services he was getting. 

I will be the first to admit that I have had meltdowns over his scores.  I mean, at Finn's real age of 33 months, his expressive communication age was equivalent to a 16 month old.  Its really hard not to let that bother you. 


Sometimes you may get an Early Steps coordinator or a therapist or some other evaluator that asks you ridiculous questions.  I will never forget one Early Steps coordinator we had that came to the house.  She asked if Finn says any words.  I said no and she bubbled in the answer.  The next 10 -15 questions were all related to expressive verbal language.  I was welling up with more tears with each questions and I finally said if you have any more questions regarding Finn's verbal language, please don't ask and just bubble in no.  This was so frustrating and I was emotionally exhausted before the test was over.  This is not typical of an evaluator and if you run into this scenario tell them to stop and ask for someone new.

We have been told many times in Finn's life that the older he will get the broader the separation will get between his peers and him.  It makes sense - when you are comparing kids at 12 months.  The other child may be at a 12 month level while Finn is at an 8 month level, but at 33 months - Finn was at a 16 month level.  The difference grows exponentially over time.


I have made peace with this, but I also don't let this handicap Finn's potential.  Often times, doctors or therapists or school psychologists tell parents what their child's potential is.  Don't listen.  Be real with everything, but also hold high expectations for your child.  I think so many parents give up when they get bad news and its detrimental to the child...you have to help your child reach his or her full potential and no one knows what that is. 


I love going to Finn's neurology appointments.  That statement sounds pretty crazy as I'm typing it, but its true.  I love his doctor.  He is so honest and he listens to every detail we have to say.  He does research before we meet with him.  It's so refreshing.  He always sees a huge leap in Finn's development when we are there and comments on it throughout the whole appointment.  He says the minute you see Finn stop progressing...that's when you have a problem, but always push him to progress.

So, in closing, don't take these tests too seriously.  Look at them to see what you need to work on, but don't let them define your child or how you interact with your child.  Don't let the test results break you.  Keep praising each accomplishment, no matter how small it may be to other people.  Cheer loud and often! 
 

Isn't it Always the Little Things?

Some times those little things aren't so little...sometimes they are enormous.  Yesterday, out of no where, Finn said "Where daddy go?"  He then said, "I want daddy."  He was clear as day and I sat there shocked with tears streaming down my face.

I tried to get him to repeat, but he had moved on to wanting his "hoo-hoos" aka shoes.  It was tough to go to sleep last night.  I was beaming brighter than the sun!

This morning, on the way to get his hearing aid molds done, he said "I want more."  It sounded more like "I unt morey" but I knew what he meant - he had just finished some potato sticks (yes potato sticks at 8:00am).  Yay!!!


When you child is given a such a rare diagnosis, you have to take everything doctors tell you with a grain of salt and understand that you can still push your child to be everything he or she can be.  Children with Finn's syndromes have such varying issues - both medical and developmental.  Just like with any "typical" child, you cannot compare one child with a syndrome to another with the same syndrome.

We have gotten excited over so many "little things" in the past from Finn pointing his index finger, to chewing food, to throwing a tantrum, to drawing a straight line on a piece of paper, and I just know we will be having many more celebrations.

Don't let words get in the way of you providing all that you can provide for your child.  Don't listen when someone wants to tell you what your child's potential is.

Our house is a wreck. I'm exhausted and live off of caffeine and vitamins.  I quit a great paying career.  I go to bed with my voice hoarse at night from talking so much trying to get Finn to repeat after me.  We have medical bills the size of mortgage payments (sometimes multiple mortgage payments) every month.  And all of it is worth it to watch your children progress and learn something new every day.  The other stuff doesn't matter at all, spending time with my beautiful family and sharing these amazing experiences is what life is all about.

Kids Toolbox

I cannot wait to get to Clearwater and check out this store.  Kids Toolbox is designed for special needs kids and their parents/teachers and from what I can tell, the prices are very reasonable.

In addition, they hold $10 classes for special needs children on Sundays.  Coming up is art, followed by music, and then karate.  The ages for these classes is 5 to 11, but the lady I spoke to on the phone said younger children can participate as long as their parents stay with them.  They just had yoga which I would have loved to take Finn too.

They also have free parent seminars one a month.  The next topic is ASD and the topic following that is on how to stay calm.

For more information, check out their website:
http://www.kidstoolbox.com/