People say blog posts are supposed to be short and sweet, so my apologies that this is neither....
I'm not sure where to even begin this post, it's not at all what I enjoy writing here or what I ever thought I would put to paper.... This is where I write about Liam, about his diagnosis of Albinism with Nystagmus and our families struggles and triumphs along the journey of parenting a special needs/visually impaired child..... So what happens when you have a child and a husband who are both in this boat together?
From day one I remember several occasions where I begged and asked God to show me what my son sees, through Liam's eyes, hence the blog.... I never expected that he would actually show me through my own two eyes, less alone those of my dear husband.
Brian first started complaining of blurred vision and headaches, with a little light headedness, a week and a half ago. The following day he had hit his head at work and then come home to receive a massive headbutt from our son. It was so loud I heard the CRACK in the next room but Liam was fine, Brian was bruised but after the initial sting he did the tough guy thing and waved it off. Morning came with a major headache but we went on with work and dinner and bedtime routines. Several days past of headaches and "resting" his eyes before someone notices that he was winking and rubbing his eyes a lot. His response, "yea I've had double vision non stop since the day we headbutted and i hit my head at work" .... To this my response was "what hit at work," as I hadn't been told before.
The next day he was off to the doctor, insurance or not (which he is on the "not" side of that fence) where his doctor sent him to a optometrist thinking he might have cracked the bone above his eye. I arrived at the appointment just in time to hear the doctor say the words " you have nystagmus".
Now if you've been following along on our wild ride on this blog, you know from our experience with Liam's diagnosis of nystagmus that we are now experts in the subject after all the long research hours and doctor visits. We also know that once started, nystagmus hardly ever just stops......causing double vision and blurred vision even legal blindness.
It is also something that is caused by severe head trauma or neurological disorders like MS, ALS, brain tumors, bleeds, etc.....
Since Brian wasn't born with it that rules out congenital, leaving us with acquired nystagmus and the list of causes for this are on a scale from harmful to fatal. None just good but some manageable.
So started the hour long questioning of the eye doctor, then the MRI which ruled out tumors, bleeds, and lessened the chance of it being head trauma.
This leaves us with neurological disorders..... And a day after Christmas appointment with the neurologist.
That my friends and family is where we currently stand, on the fine line of WE NEED YOUR PRAYERS.
So many have called, emailed, and text to see what we needed and how we are doing and we are so grateful! We love you all! But right now we just want to ask for your prayers. Brian is having to adjust to not driving and the constant vision loss of seeing double (and relying on me to read things to him and drive him around) as well as the fears of what lay ahead and what will happen if his vision is not fully restored. It's the same road we walked with Liam but yet so unfamiliar and different since, let's face it, Liam doesn't know any better and Brian knows exactly what he is missing.
It's a lot to take in, but one thing he has said is that he feels like he understands Liam and his sight so much better now having walked in his shoes... And through him all my questions about "how Liam sees" have been answered. Some I wish I had never asked, but glad to be able to see through Brian's eyes into Liam's. Through all of our eyes the world looks slightly different tonight that's for sure.
So we ask that you just keep us in your thoughts as we enter the crazy holidays and the great unknown, and we promise to update with more shortly...we love you all!
Oh and if you see my husband lurking around with an eye patch, be sure to toss him a pirate joke to lift his spirits. He will love it! :)
Saturday, December 1, 2012
One of the biggest issues we faced over the past 6 months with Liam was his sensory issues. A fellow mom of a child with Albinism said it was like raising a child with a sensory disorder like Autism; we quickly figured out what she meant by this too. Our vision therapist reassured us that almost every child with a significant visual impairment/blindness has sensory issues that often even land them on the autism spectrum though they do not have autism. This is due mostly to the fact that they are tactile little beings, meaning they rely on their sense of touch (and sound) to navigate their world. When that is disrupted, like in loud noisy rooms or with too much touching or not being allowed to touch other things, it can overload them and lead to meltdowns. To avoid this she told us she would be working a lot with Liam on sensory therapies. Slowly from the things we saw her do with Liam in therapy, we were able to construct sensory stimulating situations at home to keep practicing with Liam.
Some issues we faced starting out: dislike of messy hands, dislike of certain food textures, dislike of noisy nursery rooms and situations, dislike of swings or uncontrolled moving....the list just goes on.
Now here are some things we started working with him on at home that have really seemed to help with his sensory issues (which are mostly invisible now to the untrained eye but appear on occasion.) We are always careful to watch when we think the situation will push Liam to a melt down (like nursery still does, and large gatherings with non familiar family).
- Bubble baths- We had to really ease into this one with blowing bubbles and learning first to pop the bubbles. Once we did this he was easily comfortable with bubbles in his bath.
- Swimming- At first Liam would only go into the water with me if he was firmly attached to my chest, legs wrapped around my waist. I had to really work on facing him outwards and getting him to relax and kick the water with his feet. Slowly, he started to venture further away from me, frequently coming back to gain more assurance from Brian or I.
- Ball/Sand Pit- This was Gigi's idea when we first started out because at therapy Liam's therapist would get in the giant ball pit with him in her lap at every visit. Each time he would spazz out and claw his way out. Every week they would try again, easing in one leg at a time until his torso was in and he was fully surrounded by the little balls. We made our own at home with a cheap kiddie pool and a bag of the same plastic balls. (She said the balls were easier than sand but either served the same purpose.)
- Playing in the Leaves- When it's too cold outside to swim, a big pile of leaves will still do the trick. This is just like the ball pit, submerging him in the leaves or sprinkling them over his head. Only because he can throw them back on us, did he eventually begin to love this!
- Wrestling- It's simple but effective! The constant contact all over as he and his daddy wrestle along the ground, is a great sensory activity.
- Finger painting- One of my favorites! Read about it HERE.
- Swinging- This we also did each week at therapy because it removes Liam's sense of control and would always send him straight into a meltdown. To get past this, we had to start with small movements in the swing, and make encouraging sound affects like WOOOHHOOOO and WEEEEEE!! The minute he started to panic we had to remove him from the swing. Each session he sat a little longer, until finally there was a giggle....then another.....and another. Right now , 1-2 minutes is our max, but for that 1-2 minutes we giggle with enjoyment.