I think the timeline between posts on this blog are so distant because Ben is doing so well. I’m afraid to say it out loud as it tends to jinx his progress.
Two weeks ago, Francois and I (somewhat simultaneously) decided that it was time that Ben have his own room again. He hasn’t had his own space since he was an infant as from birth until the moment we got overnight funding, he slept in our room. And often on my chest or in my arms on the couch. Now that we have two lovely nurses that accommodate his sleeping pattern (also known as “without a sleeping pattern”) – it’s time to give him that space back.
Practically overnight, we cleared out our extra room that we had been using for storage, swapped beds with Avery so we could use her day bed in his room, purchased furniture, decorations and voila! After placing his personalized “B” from his Ma Tante Chantal outside his room door, Ben had a bedroom. He had.. HAS a space of his own.
Overwhelming but exciting! Best part – he laughs when we take him down there now; like he knows it’s his. I could cry just thinking about it. Such a milestone moment for our family!
It’s been a while since I’ve posted – almost four months which in the life of a Bug is eternity. In the case of my Bug, not so much but still much as happened.
Ben qualified for Nurse Next Door and has been doing really well. He now gets to sleep within his own patterns and lives without two frustrated parents wishing him back to sleep. He has two lovely night nurses who cross their fingers that he sleeps through the night but if he doesn’t, happily play, feed or settle him. When Ben falls asleep at 6:00 p.m. we no longer panic to keep him awake in fear of sleepless nights and instead he gets to sleep when he needs it.
My mom became Ben’s official Development Specialist with GRIT. After lots of list making, pros and cons considering and thought sharing, we decided to keep Ben in GRIT as we feel his specialists have great ideas and suggestions for Ben’s development. We decided that school was (or is for the time being) not the best environment for him, that restricting his programming to three crammed hours was actually hindering his development and some other things that don’t need to be publicly shared were not in Ben’s best interest. Since changing the way he is presented opportunities – time of day, interaction, and really following Ben’s lead he has progressed tremendously. He has demonstrated an increased interested in his standing frame, started reaching and removing things from buckets – moving them into new places and even testing out food again. (thanks Mom!)
He has gained weight. His doctor actually stated that he didn’t need to weigh him last appointment because he was looking round. Yah right! But the sentiment is nice!
He has increased his daily intake by almost a full 8oz (a bottle!). I actually had to call Home Nutrition and ask for an increase in formula!
He is starting to move his arm as if to wave when you say good bye.
AND his vocabulary/sound making has become much more expressive.
Lastly, we purchased a new piece of equipment that we received on Thursday – the GoTo Seat from FireFly and Ben appears to really enjoy sitting in it. We’ll see if there’s a “honey moon period” with it but so far, so good.
I am writing you this morning as I am extremely frustrated by the approval and decision making process regarding services requested for my son. We, as a family, absolutely do not ask for anything more than we need or our son requires and ensure that we do not abuse the system put in place to support children like ours but we have come to a standstill with our contract with Family Supports for Disabilities.
Our son Benjamin has a rare neurological disorder called Ponto Cerebellar Hypoplasia Type 3; I’ll spare you the details as I’m sure you will just Google it if you’re interested but what it has meant for us and more importantly him, are countless nights of not sleeping. I’m not exaggerating when I state that our child does not ever sleep in a pattern or that he is up for hours at time each night. In addition to that, he is supplemented food through a gastrointestinal tube which puts him at risk for aspiration and choking due to reflux and sensory issues. For the past five years, my husband and I have tagged off and on to support Ben at night, taking turns sleeping the couch, watching Elmo with him for hours at a time or simply just playing with him but it’s come to a point where we are feeling burnt out. I feel we have made a good run at trying to do it ourselves. But the worst part of our exhaustion is how it relays to Ben; he definitely can feel the frustration when he’s been up since one in the morning and we’re tired. We try our best to be patient and accommodate him but for lack of better word – we’re pooped. This is not a normal circumstance. We want to be the best parents for him, provide him the best quality of life and to ensure that he’s happy and to do that, we’ve applied for over night respite assistance and have even registered and qualified for the service from Nurse Next Door (a private company) to watch Ben through the week 10p.m. – 6 a.m.
However – FSCD will not approve the funding needed which I do not understand. How is my child not considered as valuable as they funding requested?
I understand that FSCD may look into using the Supports Intensity Scale for future assessments and when that happens, Ben will without a doubt receive the financial supports he requires based on his medical and behavioral assessment alone but until then, I don’t believe that asking for overnight respite for him is much to ask; it will allow us to be our best for him during the day when we can engage him in his community, include him in social activities and allow him to have fuller days. How is that not worth what we’re asking for?
Please point me in the right direction…. a direction that allows us to provide nothing less than the best support possible for our son.
Ever really wonder why I’m tired, cranky, overwhelmed, angry, inappropriate… tired. Did I say tired?
Unless you parent a child with special needs, it is difficult to truly understand what we parents go through; I am certain you can sympathize because your two year old is horrible, your daughter won’t eat her vegetables and your future NHL’er didn’t make the cut. It’s not quite the same. Not less important, just not the same. I am frustrated by society’s response to my child… let me run some of the things that drive me nuts.
You put your kids to bed, kiss them, say good night. I prepare four different medications, a vitamin and administer them all at different times while trying to keep my son asleep also while his g-tube is stuck between his legs and wrapped around his thumb. (not even kidding, my husband just came in and told me he cut a hole in Ben’s shirt because the tube was kinking and he didn’t want to set off the alarm while he was asleep)
Full day of fussing, cranking, crying, swinging, flailing, biting, puking. Followed by the same type of night.
The same “support” person pushing for the same goal year after year and then checking with my mom to see if we really don’t see the value in it.
The smell of thrown up PediaSure Plus. It’s better than normal puke but the smell is everlasting.
Cost of Ben’s specialized rain stick: $300 after shipping and duty because it’s not available in Canada. Cost of a regular rain stick $10.
Additional costs to prescriptions because it has to be specially mixed, brought in or purchased from a dispensary.
People who tell us it couldn’t have happened to two “better” people or more “experienced”. Don’t even get me started on the “God only gives us what we can handle” crap.
Movie day at Ben’s school.
Questions like – “Can he hold his own toothbrush yet?” “Will he ever walk?” “He’s really 5 years old?”
Charting progress in reference to milestones.
Ben crying for food, downing a bottle and then throwing it all up. At 4 am. Needing new clothes, new blanket, new chair. And then his little sister waking up to his cries.
Extra medical insurance for travelling requiring a letter stating that we’re not going to a destination for medical purposes.
Lost friendships from people who don’t understand that not only do I not want to go out every weekend, or come to your Tupperware party but that the only way I’m going to visit with you is if you come over, bringing coffee and make a rule that showering is optional.
Inclusion. I think it’s an important thing. I’m a huge advocate of it. My son will not be continuing his “education” beyond this year.
Nurses thinking I’m challenging them when I tell them they won’t be able to draw blood from Ben. Don’t try. And if you do, please be advised that you’ll have to explain yourself to Ben’s doctor. He’s scarier than I am.
My son does not have scoliosis. I know it’s probably more confusing that he doesn’t but I’ve told the doctor a million times and he still asks how “it’s” doing every time we have an appointment.
People saying “it’s okay” when Ben is being a turd. Just because he has a disability doesn’t mean he can’t be somewhat accountable.
Parents who hinder and enable their children. Disabled or not. Encourage and push your child to be the best person they can be. I will never understand or support an excuse to be mediocre.
“At least you have that one thing we as mothers are always asking for. A baby forever.”
Crowded bath tubs.
AT equipment in the bathroom because you can’t leave your child alone for five minutes to take a shit.
“You’re such an inspiration.” Let me tell you – I am not. I am a mother who adores and loves her children and would do anything for them. I hope you would too.
I am sure there are other things I can add… I feel like this is one of those “stupid things people say to parents with disabled children” lists. In all seriousness though, we are just the same as you but we experience things differently. The best thing you can do is listen, know how I like my coffee and forgive me when I suck. I’ll make it up to you… one day. I promise.
Benjamin understands presents. What a very ideal kid thing for him to get! 😉
It was the first time I’ve witnessed Benjamin recognizing wrapping paper or bags and then paying attention as someone unwrapped whatever treasure was inside for him and it was awesome. Such a lovely experience on the most perfect of days.
Whenever Francois and I have a discussion about Ben and his sleep patterns, we are always asked how we manage. Our answer is the same and something a long the lines of “It’s been six years of not sleeping, you get used to it.” I think that speech is has become a little less convincing.
We are used to it but our bodies are not as well adjusted as they were even a year ago let alone six years ago when Ben was a baby. Our bodies are tired, our patience well worn and my eyes are suffering in the form of big black bags I cannot get rid of. We used to tag each other out but now, we take turns sleeping on the couch with Ben so the other can sleep. Three all nighter’s in a row used to be a rare occurrence and now it’s become the norm. Ben has fallen asleep at nine and then up by one every night since Wednesday. The past three nights, not going back to sleep at all. It’s beginning to take its toll.
We base many of “tomorrow’s decisions” on his night because it directly influences our night and even though we try to be considerate of each other, it’s hard not to want to punch your spouse in the face while they’re snoring away and you haven’t yet been to sleep. We started with two nights respite in October and I think it’s time to up the anti (already have the doctor pushing for it anyway); maybe we’ll get some sleep in the new year?
Ben has not been feeling well lately and though is on what could be a permanent anti-biotic for his constant ear infections, guess what… he has a massive ear infection. My poor boy just wants to curl up on his mom (or Nana when there) and spit, drool or flick his mouth (which is how he self stims/relaxes). Last night, we’re curled on the couch with Poppy watching a Curious George Christmas special and she turns to me, asking if Ben is sick. I told her yes, which is why he’s so quiet and curled onto Mommy. She then tells me Ben is her big brother but that she is bigger than him. Yes, that’s true Poppy. A few minutes pass and she tells me that Ben is different – he’s not a baby but he’s small like a baby. All her words and again, true. “Mommy, Ben is our special boy.” Yes, even more true. Then she curls up along his back and plays with his hair and tells him she loves him.
She adores him, is his best friend, little sister and protector…