Tag Archives: grandparents

Bubbling fountains of exhaustion…

21 Apr

Plumbing/H2O conservation event

I am exhausted from having to spend time (that I should be spending with my child) defending/explaining myself as a parent to other people and managing unreasonable expectations of other people.

I’m thinking of printing up some wallet cards- on one side they will say “My child has ASD. Your ugly, judgmental expression and attitude is making him scream louder.” On the other side they will have a host of facts… There will probably be some snide comment about Rainman and of course something about Autism being a spectrum. Possibly the definition of  spectrum as it seems to evade the people who latch on to Rainman as the diagnostic criteria.

But it’s not just strangers.***

A great piece I read recently for grandparents with a newly diagnosed grandchild with Asperger Syndrome mentioned how to behave if they don’t believe the diagnosis and how to find more information about Asperger’s. It’s a perfect letter, even in it’s very broadness.  I’m amazed on a frequent basis how many people (friends, family, acquaintances***) tend to ignore the diagnoses and trials we have faced in the past 6 years. It’s a type of denial that from afar seems like the most loving, generous acceptance, but from this perspective is just plain ignorance and refusal to accept the reality.  Every article I have read about special needs parenting and grandparenting speaks of mourning the loss of the dreams one had for their imaginary perfect grandchild.

Blech.

I get that it needs to happen for many people and it’s part of the healing/mourning process. But I also think that lots of parents with a special needs kid don’t get the luxury of going from everything is fine to a diagnosis and having time to process any of it.  We are entirely too booked to spend time doing anything other than supporting our kids and most of us don’t just wake up one day and say “Johnny is sort of ‘off’ compared to his peers”, it’s an ongoing and lengthy process.  It’s also incredibly isolating in so many ways.  Grandparents and other relatives*** adjusting to a diagnosis, if they share the information, receive sympathy and support which is wonderful.  As a parent who has been through the wringer, I wish I didn’t feel like dancing around singing “I told you so! I told you so!” in full operatic blast at the people who called us names and labeled us and suggested we improve our parenting skills rather than pursuing a label and help for the broad and invasive symptoms our son was having. I wanted a piece of paper that has his diagnosis, I wanted it framed and a mini laminated one for my wallet. One that says “See, I’m really an awesome parent to the world’s most amazing little boy who happens to have ASD” (It would also have a little *ASD is a neurological condition and not a result of poor parenting or non-corporal discipline” and possibly a genuine, heartfelt “Na-na-na-na. So there. Pfffft.”)

If I could I would enact a law that would make people apologize for the hurt they bestowed upon the exhausted parents, and the child.

I think one way I can make lemonade out of our scary and horrible 20 week ultrasound (we had a bunch of red flags either for Down Syndrome or genetic disorders incompatible with life, turned out to be due to a scheduling error. Yes, my hair did start going gray on the spot) in that it made me examine the expectations for my child.  Alex’s hydrocephalus and initial kidney reflux made me examine the expectaitons once again.  When he was a year old the early intervention case worker asked what our goals- short term and long term- were for Alex.  Nobody wants to go through any of this special needs stuff, but really, understanding one’s expectations and setting goals for your child and for yourself are crucial.  I understand the need for Kubler-ross’s stages in processing these things, but to be blunt: I don’t have time to hold your hand. My kid needs both of my hands 24/7/365. I can steer you toward sources that can help, but frankly I have been on my feet 24/7/365×6 (except for the few months on bedrest when I was called selfish and uncaring because I did not appear at one birthday party) and the only me time I have is the 15 minutes in the shower where I really just lather up and cry so my kid doesn’t have to ever think that the tears are because he is different in so many ways.  They aren’t. They are because I am exhausted and when I have opened up about our trials and tribulations and our triumphs I am told I am too negative or obsessive or I just talk to much and I go on and on (I do. Guess what? Kids with Asperger’s usually have a parent with many traits. Definitely applies here.)

Which brings me to the 2nd most exhausting thing : having to manage other people’s expectations. Those folks living in semi-denial (they seemingly accept your child by ignoring their differences completely- lovely and sweet but it brings a whole new element of feeling like one is living in the twilight zone as they brush everything off and saddle you with a virtual straight jacket while your child gets himself into dangerous situations and they just smile and tell you to stop being paranoid and overprotective as that’s what all boys do.).  They don’t accept the reality, they cannot form any sort of support whatsoever. They can’t even watch your child safely for an hour so you can go to the gyno without holding a puking an infant during the exam or so you can just let go an nap without worrying about every little noise.  Because they, in their denial (for lack of a better term, I also think of denial in many cases is better described as intentional ignorance) can’t possible babysit for your kid because they don’t really see your child in all his/her real, rawness. They see the child they expected, particularly in the case of kids with invisible differences.  They may comment on your parenting as a potential trigger to the child’s differences. Every minute of everyday of my life, since we were trying to conceive, has been dedicated to my son. I would love a day off, or an hour where I don’t have to divide my senses to accomplish tasks and keep him safe.  The reality is that without the attention we have given him, he wouldn’t be in school. He wouldn’t be communicating with any of the other kids in any positive way. He wouldn’t be able to sit and focus on some of his favorite activities.  Explaining that he is not cured and this is a very real thing that requires this much attention and having to defend our decisions as his parents is so exhausting.   The only thing keeping them from accepting our kid is themselves.  Their intentional ignorance (they have as much access to resources as I do, they can ask if they need guidelines or information, but they never have) is based on their expectations.  We are burdened with their expectations, thankfully we aren’t further weighed down with our own as we know better.

When Alex was born we were burdened with the expectations of a relative who expected Alex’s birth and the following months to follow what she had imagined, but no adjustments were made for actual circumstances (high risk, prematurity, c-section, NICU stay, and weak immune system and RSV/flu season quarantine) and who suffered for it?  The handling of those expectations, the intentional ignorance (it was decided that we were paranoid neurotics because we wouldn’t visit with anyone with a cold, flu, or mono or visit hospitals with our preemie. We were listening to the guidelines given to us, and frankly common sense, and passed the information on to family and friends to protect our premature infant), still does damage to Alex and to me and to my husband(and some people have still not bothered to read a single article that would tell them that we were rational and being good parents, not neurotic germaphobe freaks).

We don’t need this extra stress, we have plenty.

So my advice, if a relative(near or far) or friend has a child diagnosed with anything, ask about it.  Do not pretend it is not there and do not pretend it is the end of the world or make light of it.  Please do not base your opinion of our parenting and our child on some other person’s experience.  If you really want to help, if you really want to continue our relationship in this new leg of our personal journey, then don’t say “if there is anything I can do”, the best thing is to just ask about our child, or this new path we are on. Just ask if there is anything you can read to learn more, so you can understand and help when the parents or child need it, even if the help that is being begged of you is as simple as a receptive ear.  Throw your expectations out the door. Even if you have experienced something firsthand, you have not experienced it from my unique perspective, or that of my husband or child, so put those expectations of all of us far, far away.  It can help each and every one of us. It can make our little world, your world, and the world at large, better a more peaceful and enriching place.

So, if you are a parent of a special needs child, or a special needs parent of a non-special needs child, or if you are a special needs parent of a special needs child please speak up! I’d be curious to hear what you have to think.  I’d also love to hear from extended family members (anyone’s family!) who have had a child diagnosed with a neurological/developmental disability and how you have handled it (for better or for worse, it can only serve ot teach, right?)

Big hugs all around…

xo

Bek

***p.s.  This, by far, doesn’t apply to every family member or friend in our lives. I guess it is those squeaky wheels that get the grease (or the can of whoopass, as the case may be).  If you have never even had the slightest thought along the lines of “I knew this would happen” or “It’s because they are isolated freaks” or  if you have never felt slighted because we did not participate in something that was focused on you or anyone outside of our mini- three person tribe,  then this stuff probably does not apply to you…  And you get an extra special thanks. Wish it were more, but yeah, you probably just read this and well: THANKS.  Big hugs.

No mess and low stress….Kid-made card idea…

6 Jun

Oh no!

Originally uploaded by CleverGirlBek

Here’s a recipe for frustration:

ADD/ADHD kid + ADD/ADHD mama + craft supplies + desperate need for child-made greeting card

Ok, so he drew a perfect tulip at age 16 months. Before he could walk.

He couldn’t walk until 22 months so most of the really shockingly advanced stuff happened before that momentous occasion.

Still, I like to give the various grandparent’s handmade cards….

But my kiddo who has some language, neuro, and sensory stuff going on along with ADHD has a hard time sitting still and following even very general (or specific, trust me, I have tried everything) directions usually will just wind up with a giant table full of glue (see glue tip below!) and no cards will be made… I found that the easiest way to make anything with him is to do it in 5-10 minute increments… I do realize this is not teaching him to sit still and focus for very long, but at this stage of the game we are working with smaller goals (and we don’t always reach those smaller goals, so they aren’t “too small” ….they are just right…). He also tends to only see everything as a finite whole. So this is teaching him steps and details…

Anyway, I sat him down with a marker and a stack of blank cards (by the way, if you think you are going to make a slew of kid cards, why not buy a giant box from http://www.doubleupaper.com ? They are fast and the prices are great…For the price of 6 envelope and card packs from a chain craft supply you can have over 200 sets…I keep a case in my famed plastic containers- so they stay fresh and don’t absorb any smells (my husband makes tacos once a week. I love tacos but I still want to hermetically seal everything in our home first.))

See what I mean about ADD? I need mapquest for all of my tangents…Not that it would be *that* much help… :-)

Anyway, I sat him down and had him make smiles or a “c” or “u” on each card.

He did about 10 of these before he went to town making dots and destroying the magic marker tip….

He got up and ran around for a bit and then was willing to sit down for a few to do some more… I busted out the self-adhesive googly eyes and had him put eyes on the “faces”…. He did 15 of those (good for fine motor skills and dexterity, I believe)…

The next time he sat down he drew the mouths/smiles on the extra 5….

15 cards in no time flat (if you tally all of the time together and subtract the breaks)…
and nobody became frustrated, and both of us has a huge sense of accomplishment at the end of the project…

(and the grownups loved the cards… it must have been a nice change of pace for them to be able to say “wow a smiley face” rather than wracking their brains having to figure out what kiddo had drawn as he is king of the abstract these days…)

Kaboost! Wahhhoooo!

30 Apr

Over the past couple of months our family has been eyeball deep in home and family reorganization… Because my health and physical ability has changed so much and boyo’s needs are changing daily, I am so much more aware of the things that help me, that give me a little more flexibility or a boost with one set of needs so that I can save my energy and strength for where and when it can have a greater impact. So, the next couple of posts will be about gadgets and tools that are helping me and/or helping boyo…

This one is a new favorite….We have been through a zillion baby/child seating devices- bouncy chairs, high chairs, portable high chairs, boosters… Boyo is at this point where he really wants to be a big guy and is very sensitive about using any implements that say “baby”. Today he told me that he is with the 3 year olds in school, so he is a baby. Any which way I sliced it I knew he wasn’t going accept that his birthday is 5 days after the state cutoff…. I’m learning lately that, with his delays and his sensitivity about being grouped with much younger kids, it’s really important to not totally bug him out with new things (he doesn’t transition easily or in some cases at all) and more than ever helping him feel like a big guy makes him behave like a big guy. So I am really learning about the delicate art, the dance, of keeping the little guy supports that he still needs, behind the scenes…

Anyway, part of this is, as he is still a smaller kid in size, is outfitting every area in the house with step stools. We recently started eating dinner outside every night, as a family (more on that later this week). I bought this gadget as an alternative to a booster seat as my mom’s dining chairs are a little, um, different…They do not accommodate any baby/growing kid gear…

I found an ad for Kaboost in the back of a local parenting magazine and ordered one immediately. It’s awesome. By far one of my most favorite kid gadgets. Almost any chair can be used on it… It comes in brown so it blends with Oma’s earth-tone rich environment. I am ordering a 2nd one this week as I want one for her house and the one for ours. The only downside to it? You do have to lift up and maneuver the chair and pull the springy arms of the kaboost out and get it all together- not a big deal, I’m guessing, for most folks. But this maneuvering is a bit difficult to me with this current body, so our Kaboost stays at home, on one chair. I wouldn’t call this issue a flaw (trust me it’s me and not the Kaboost!) but that is the one thing keeping me from taking one everywhere. When out at the rare restaurant meal boyo can use a regular booster. But for everyday I find the Kaboost to be a sanity saver for us and it encourages big boy behavior at the dinner table which is something that puts this in my top 10 gadgets for growing kids…

Here’s the link to amazon- more information on kaboost and images…. KABOOST Portable Chair Booster Chocolate

%d bloggers like this: