Tuesday, August 24, 2010

Moving towards Acceptance

This weekend when I was out for my ladies night, my good friend Courtney and I were discussing my new sticker for my car "Welcome to Holland".  I was so very excited to get this sticker and display it proudly.  Its almost like a secret club that only if you live in Holland, would you get.  I will share the poem with you, just click here. So its really not all that secret but I am finally coming to a place of acceptance and understanding.  The interesting thing about this discussion with Court, we were comparing how it made us feel the first time we read it.  For her, the poem really hit home when they told her in the delivery room that they thought her daughter had Down Syndrome. (I hope that is really accurate Courtney!) For my journey it wasn't so clear cut, the realization of Walker's delay.  So instead of getting off the plane directly in Holland, we have been rowing to shore in a two man row boat and looking at the coast thinking... hmmmm... this isn't Italy after all! (you really have to read the poem to understand my reference here... so go read it, here!)

This post is really fitting for me today since we just returned from a visit with Walker's neurologist. Its been almost a year since we last visited him, mainly because I kept pushing it off. When we last met with the genetitist, he suggested we have the neurologist do a spinal tap on Walker to get blood cells which could then be tested for more rare disorders.    

The problem is that Walker is still a mystery to the medical community.  His MRI and all genetic testing come back normal. Dr. Brain (neurologist) explained that this happens 30 - 40% of the time.  They just can't explain why a child is cognitively and physically delayed. As time goes on, there may be newer things to test for or other things may become apparent.  But he did agree that there is no rush for a spinal tap, since it really wouldn't change anything that we are currently doing for him.  I point blankly asked him, if he is then considered in the MR bucket (Mentally Retarded) and he replied yes.  I also asked if a lower IQ would inhibit his physical capabilities and he explained yes. Walkers reflexes are good so they don't believe that there is a physical reason he is not moving on his own etc.

As I said I am moving more in the direction of acceptance and although I may have sounded matter of fact in his office, I just had to be straight forward with the questions that are lingering inside myself. Of course, with this comes more questions and worries.  Like, what kind of a life will he have? What kind of a life does that mean we will have? What impact will this have on Sawyer?    

I know that all parents have worries, but take it from me, when you have "normal" children your worries are where will they go to college? will they get along with other kids, when will they want to drive? etc.  Once you have a child with special needs your worries are more constant, every day.... like what is the life expectancy? how can i afford to take care of them after I am gone? This worries of course may be thought about for "normal" children, but its more of an in your face situation when looking at Walker everyday.  Little things, like at breakfast, "will I have to spoon feed him for the rest of his life?", or at bath time "how am I going to pick him up and put him in the tub when he is a teenager?" Its not that I want pity or a badge of honor, it just means that some days my mind is else where and I don't always want to be the bummer of the party when people ask "so how's he doing?". I think that this is a life long transition. Each day comes new challenges, and new questions or the same old ones, but I know that he is loved and he loves! 

I wish I could end this blog with some spiritual or uplifting phrase about his purpose on earth or guiding forces but the truth is I still  haven't quite figured that out yet. There are still more lessons from Walker that need to be learned.

Thursday, August 19, 2010

Food issues

Some time ago, not exactly sure when but at least over a year ago, I decided to put Walker on a diary free, soy free and gluten free diet.  He had always had reflux, even when I was exclusively breastfeeding, and I was looking for some answers to his non gaining weight issue.  The diet seemed to really help him, once we got through the whole detox part. Lately, however, I have been questioning this diet for him.  I feel that he hasn't really ever moved past the baby food stage, due to his motor capabilities, but what things can we do to spice up his diet and maybe motivate him to start chewing? With so many restrictions its not as simple as just pureeing up what we have for dinner and giving him that.  Its a process to cook, mash and freeze his foods.  Some days I am just to plain lazy and opt for the ready made baby food jars.  However, my wallet really feels the impact of those days! I am wondering how I can slowly put these items back into  his diet and what the ramifications might be? I  just don't know where to begin!

Monday, August 16, 2010

Good and bad

Good days and bad days, we all have them! Some people have more than others, some have them all in one day with the pendulum swinging back and forth. While you are in the middle of a bad day, its hard to see the other side. When Walker is having a bad day, the whole house is having a bad day!  Its not because he is such a tyrant that it explodes everywhere, its more because we cannot help him figure out what he wants or what he needs and we are exhausted!

Communication is something that most of us take for granted.  I used to morn the fact that I have never heard him say "mama" or wonder if he will ever tell me he loves me. But now, I am fully understanding the frustration that he must have at not being able to tell me what he needs. Last night he was very tired, and we put him in his bed, but after thirty minutes of him rolling around in there I figured he must still be hungry or thirsty. When I brought him back out and offered him a bottle he drank it but was screaming the entire time.  He was throwing his body around  and stiffening his legs.  He was obviously really, really mad!  So I put him in his chair, mashed up a banana and offered him that.  He relaxed and ate, (but still was a little grumble)

These moments come often and sometimes everyday. I can see how frustrated he is and how mad he becomes when we don't know what he is trying to say! His speech therapist and us at home are working with him to do some simple signs or reach out for options, but I am not sure cognitively if he gets it.  I am worried that he never will!  What kind of a life is that? I fast forward ten years, and think, "man, how am I going to handle a teenager like this?" At the same time, I wonder, is he signing in his own way and I am not seeing it? Its hard when you are tired and trying all the tricks in the book to stand back and recognize if he is in fact doing something to tell us. I just hope with repetition and time we both can figure this out!  I would like more good days than bad for him!

Saturday, August 14, 2010


I've been a little quiet over here, and also on my other personality page, but the truth is I have just been in a real funk and didn't want to spread the germs!  Not sure what the deal it, well, maybe I do , but am not ready to disclose on the wonderful world web!  All I can say is that "this too shall pass".

On happier notes, Walker is off from school for two weeks, then everyone goes back and it will be just the Poo and I.  Hmm... not sure what we ever shall do with ourselves!  Ha!  But my first order of business once he is back in school is to actually go and spend an entire day just observing his class.  I never pictured myself a helicopter mom, but everything that I envisioned for him as huge pluses to going to preschool early, I am not sure is being done.  I don't want to jump the gun, especially since he is getting a new teacher and she will have to get the whole class in order.  So I figured if I can go in, sit in a corner and take notes, then go back with my suggestion I may not seem to pushy, (right?).  I just want him to be engaged more so then he would be if he was home. That is the point of school! 

I will keep an open mind, but I know and strongly believe that I am his voice! It is also my job to make sure that he achieves his highest potential and if that means I make some waves... so be it!

Monday, August 2, 2010

Hugga Bebe

Just have to take a quick moment to give props to a new product that I recently got for Walker.  I had seen it on a fellow bloggers post who recommended it for children like Walker that have little trunk control.  I had been eying it for a while but wasn't sure if he was too big for it.  So after reading her post, I figured I would give it a try.

It came the end of last week and it is great for him!
Its an insert that goes inside most of anything.  Its called Hugga Bebe and it is pretty inexpensive. Especially since this activity gym has been sitting in my house for almost three years and he hasn't been able to enjoy one minute in it!

Don't tell  his P/T but he is actually pushing up with both of his legs!!  This is amazing since he hates to weight bare!  Sure he has a stander but this is something that I am not afraid to leave the room for a minute with him in it!  

The only downfall is that it is hot, and Walker is a hot and sticky kid to begin with and its August, so his time in it is limited just so that he doesn't come out a wet sweaty mess!

I am very excited about this and so is he!