I struggle at times with thoughts of Asher's future, this is no secret. I try my best to live in the present, but worrisome visions are always lurking. Sometimes it's not so hard to push the thoughts to the back of my mind temporarily, but then there's those times when the future slaps me in the face and I can't stop thinking about it.
Take for instance when his neurologist made grand statements about all the things Asher "obviously won't be able to do". That one set me back, let me tell you. And just when I was coming around from the blow of that appointment, I was hit again when we had Asher measured for an adaptive stroller last week.
Those of you outside of my CP/special needs circle are probably wondering what an adaptive stroller is. Well, it's basically a pediatric wheelchair, somewhat successfully designed to look like a stroller (ours will be the same base but different seat from the one shown here). It will allow us to push Asher around outside (although we won't use it much until Nolan is walking and we can retire the double stroller), but - more importantly to us - can also be transferred to a different base at home. Essentially, it allows Asher to have supported seating not only outside, but at home when he is engaged in the two main activities of a two year old - eating and playing. The chair is a great thing for Asher. It will hopefully make his life easier and allow him to use his arms better without the worry of having to control his trunk too. We are also incredibly blessed that we have funding for it - it would run us around $7000 so needless to say he wouldn't be getting it otherwise. BUT (and there's always a but) it's initially a hard thing for us to accept that our child actually needs this, no matter how helpful it is.
Harder to swallow than the chair fitting itself, however, was when the conversation turned to wheelchairs and ramps and a wheelchair adapted van (down the road). No one was trying to be negative or assume Asher won't walk, but these people don't know Asher well, so from their perspective they were being realistic. Jordan and I are not naive or in denial, but he is only two after all, so we try to hold onto a little hope, no matter what the reality may actually be. This conversation made my mind swirl and that's when the future came crashing into the present and I haven't been able to successfully separate the two since.
So I haven't been in a great place. And what do you need most when you're already down? To be kicked of course! And that's what happened when I saw an article about how studies show that physically and mentally disabled kids generally don't have friends. Within a few lines I was sobbing and stopped reading because the thought of it all was too much to take. "That will not be my kid" I thought. What if it is?
But then, just when I needed it, I was given some sort of sign. That same afternoon when I went to pick up Rio from school, one of the older classes was outside playing. This class happened to include a little girl who has a motorized wheelchair (one of the reasons we love Rio's school so much is that it is inclusive and accessible). I have always seen her around the playground but not noticed her friend situation. Given the article and the horrible stats I had been made aware of, I took a good hard look.
Surely not surprising, when I did look it made me cry. Not for the reason you may think - but because I was relieved. Not only was this little girl playing with three friends, but her wheelchair was a key part of their play. "Did I hear someone call for a taxi?" she happily exclaimed as she sailed past me to pick up a friend and cruise them across the playground. She had no idea of how she had just made my day and helped my heavy thoughts disappear for the moment.
So just when the future looks grim and statistics tell me horrible things, I am given a reminder that things will not be as hard as my crazy, imaginative brain keeps telling me. We will adapt. This future of ours might include more equipment for Asher than we'd planned, but I think it'll also include just as many friends as we'd hoped for.
I love your posts like this. The posts where the sure tell signs of your honesty, humanity and strength pour out in every sentence. I know you are experiencing a more challenging motherhood than the average one on this earth and it’s so obvious that you do an amazing job by the way. By learning from your own laughter and sorrow of life’s unspoken cruelty and blessings; you empower your children to do the same. Cheers to Peace, love and freedom.
ReplyDeleteI could not have expressed my feelings better. This is exactly how I feel about this post and situation myself. As long as you teach your children to be inclusive, their peers should follow along. It would be sad if they didn't. You are an amazing mother and family. Asher is so lucky to have you as his role models - of course Nolan and Rio are as well. Chin up. Things will be ok. Keep trying to be positive.
DeleteAnn
Thanks so much ladies, that means the world!
Delete((hugs)) I think you were my first email after the chair arived at my house to which I locked in the wood shed! Thank goodness for the seating clinic I will try and send you a photo tomorrow but Janet (PT in seating) knows what type we have it might work as an extra thing to buy you some time while waiting for Nolan to pick up some steam on walking! It fits into our umbrella stroller (so your double one would fit it too) and it has all the support K needs!
ReplyDeleteJanet did say I have to make my mind up in the spring as to what we are going to next for K even though she is milder then Asher in gross motor, it was also the visit that Janet had seen J, at this point we will wait until July to figure out what we are going to use as we need to talk to Penny (ortho surgeon) about J the world adaptive double stroller was mentioned.
I now dread our next neuro for J got some paperwork in the mail quoting neuro, moderate receptive language delay (ok this I know) cognitive delay, autistic features, anoxic event and the words that made me go WHAT CP on J's report didn't she say in november it wasn't. I think at this point all I want is a straight answer, MRI went good found out fridays are not concious sedation (or howeer ou spell it) but the friday kids are anesthetic kids, minus a slight blip it all went good!
Tracey,
ReplyDeleteWhen we are overwhelmed like this, and then again and again, I think it best to retreat for a bit. Maybe 10 minutes of sobbing on the bed and then a warm bath and cup of tea and permission not to think of anything the rest of the day. Just keep going forward. You are resilient and amazeballs and you know these predictions don't have to be true. Hang in there.
I read the article a few weeks ago... and it made me feel equally awful too. Both for the children that don't have friends (all children that for whatever reason, don't have friends) and because it reminds me of the 'category' that we live in.
ReplyDeleteI find you have to brace yourself for certain appointments because they are focused on "your child won't be able to do..." fill in the blank... Then a couple of days later, they amaze you with their ABILITIES and you let the negativity go.
It is nothing short of fantastic that Asher is getting what he needs, without you having to take out a second mortgage. I can't imagine having to pay for the AFO's, casts, botox etc... that we have been able to get with ADP and my benefits.
How wonderful that you had that little girl to bring up your smile.
Thanks for your support ladies!
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