"Stryders Journey"

Stryder is only two, so most people think that a child that cannot speak at two, is not that unusual. I really didn't have a concern either, but after the initial evaluation, I have learned there is a lot to be concerned with. Of course, one of the most common things we hear is "My child didn't start talking until they were three," or "it's because his older sister does all the talking for him." That is just not the case.

Stryder is able to copy your tone or the tones of any song exactly. For example, he can sing his ABC"s but the words are "DA DA DA DA, DA DA DAAAA..." If you ask him to say the letter sound he can, except the K, G and Z. Stryder LOVES to learn and tries so hard. He will sit with you and read and learn for hours, not like most 2-year olds. He has sa very high attention span for his age and even plays games made for 6 and older. We even think he can read since yesterday the SLP brought out index cards with new words that he has never seen and he did the signs to them even before she said that word. We were in awe, and this wasn't the only time we have seen this. He has even done it with the EI, but with numbers.

Stryder knows his colors, although he cannot say them. Red is "EH" and happens to be the ONLY word he can say with a vowel first. Yellow is LALA and Green is NI. You can ask him to show me the red car and he will, brown, red, orange, any color.

The only words that Stryder can say clearly are Mama and Dad- all of the rest stem from those and ba and ne. Cookie is LALA and no matter how hard the SLP or we try to get him to change it, he can not-he is not able to make the K sound at all.

Other words that we know:
Car: BA
Truck: Ba
Jeep: NEE
Star: TA
Cow: Moo
Cat: MEME
Hi: HA
Bye: BA
Cup: BA
No: MU or most recently uuuuuu DU
Ice Cream: NENE

There may be a few more that I will add here as I get them. Most animals are the sound effects taht they make and not the actual name. He is also learning to sign and has picked that up very well, although his fine motor skills re very weak, another concern. He is not able to do the number two with his fingers but he can make a peace sign. He can sign airplane but not I Love you, which are the same except the angle- again it's a communication issue.

The SLP has said she has never experienced anything like this because he is not able to do a lot of things, even with practice although he can do things with his tongue that kids with Apraxia usually cannot do. His words are always the same, not changing at all, showing that it is not a muscle control problem. His words also have the right amount of syllables and the correct tone and emphasis on the right places.

Stryder has some flash cards that he practices everyday with very easy words such as Tea, Me, Tie, Bay, New, No, etc. As we go through them, he cannot say the word, but when you break it down such as Bay, he can say the B sound and then you say BAY he will say MU- something completely different.

The SLPgot him to use the K sound for the first time today by having him open his mouth and stick his finger on his tongue. He wouldn't bite his finger and the only way to make a siound was the K sound.A huge step for him and we are hoping with practice, it will get better.

I know the SLP wants to be positive, like me, but when you see the symptoms and signs and the eagerness, we know deep down there is something more than what is showing on the outside.

Stryder has started to show signs of clubbing of the fingers, which is a side-effect to some other diseases, one of which is Cystic Fibrosis, which we already already knew he didn't have. Some of the other side-effects he has are turning blue in the mouth and lips and shaking of the hands. There are 88 possible things it can be, but none of them are good and range from the best being an organ transplant to the worst being early death. I started looking at the list of possibilities but gave up after finding that some are horrible. I will await the test results.

Stryder also has loose stools, showing that at the very least is mal-absorption issues. He runs and plays just like every other child and even has better coordination. He started walking at 8 months old and hasn't stopped. He is very happy and that is the ultimate goal, no matter the outcome.

After today's call with the genetic counselor, there are other things that I should "not" be worried about: discolored brown/grey almost birth-mark like spots on his body, sweet syrup smelling urine, and other misc things that I never gave thought to. They said they will be testing for those too.

Speech delays are the most obvious sign, although the clubbing of the fingers is not something that can be seen too. He gets frustrated when we don't know what he is saying, but he is the most compliant little boy. He is not affectionate at all, but he does not throw fits and when you tell him not to do something or to do something , he will. When the EI gets books or games out and makes him choose, he will choose both, showing that he doesn't want to do the wrong thing, He is so eager to please.