Sunday, June 26, 2011

Acceptance

So, I said I wasn't going to post again until after Joshua's assessment tomorrow unless he started crawling before then.  I guess I lied.  He isn't crawling yet.  He is soooooooo close, but just not quite there yet.

I went for a long drive today (Ok, it was 20 minutes, but that IS a long drive where I live LOL) and I was by myself which is a rarity.  I was going out to Target to buy Joshua some things for his "big boy bed" and he stayed home with Rod.  And while I was driving, I was thinking about things and how I feel like I have reached a point of acceptance with all of this, and that is a really good thing.

I read things that other HIE parents write on the forums I am apart of and I can hear their desperation and their fear coming through in their comments, and I understand, I have been there, that used to be me...  But it's not anymore and it really feels better to be on this side.

Does that mean that I don't worry about the future anymore?  No, of course it doesn't.  We still have so many unknowns in the road ahead and that can be scary.   The difference between now and then, is that I think I have accepted this journey for what it is.  I have recognised that many things are just out of my control and that my energies are better focussed on things I can change (or might be able to) rather than the things I can't.

For example, when Joshua's head circumference was not growing as fast as expected in the early months, I used to measure his head obsessively.  Willing it to grow, frustrated that it wasn't, freaking out about the dire consequences that this could have.  I put so much time and energy into obsessing about something that I could do nothing about.  Now, I accept that my child has a small head.  I accept there is nothing I can do about it.  Does that mean I never worry about it?  No..  I still worry a little bit..  more about things like whether or not other children are going to tease him for having a small head, but not about the big horrible words that pop up in google, like "Mental Retardation".  Microcephaly?  *Shrug*  No big deal.  Just a label.
It used to stress me out that Joshua was "failing" his developmental assessments.  I desperately wanted him to "pass" and to be "normal".  Well, he is not.  There is lots of stuff he can't do that he should.  And despite that, he is still an awesome kid.  As Rod says, "there is still nothing that we know for sure that he will never do".  Joshua is just writing his own book rather than following all these "Ages and Stages" mumbo jumbo.  The key word in this book is PROGRESS.  Consistent progress, slow and steady progress...  it is far more important than being able to tick all the boxes at the "right" time.

In the early days, I used to feel like everything was going to be ok.  Now, I have come to realise that everything IS ok.  It just isn't the ok that I was thinking about then.  Maybe it was positive thinking, maybe it was denial, but I used to tell myself that Joshua was going to be perfectly fine, he was going to be "normal".  Now I know that he isn't "normal", he is not going to be one of these children with HIE that make a complete recovery and live happily ever after.  And that is OK.  We are making a new kind of normal.  And it is not that bad!  Sometimes it feels like we are neither here nor there.  Joshua is not severely affected so we don't fit in with those folks, and yet, although not severe, he has still been significantly affected, so we don't really fit in with the "My miracle child is meeting all their milestones" group either.  I don't mean that in a nasty way either, I am just saying it like it is.  Many people seem to believe that the only good outcome for a HIE child is the one I just mentioned, where the child makes a full recovery and suffers from no lasting deficits.  I want people to know that is not true.  I want people to know that you can have a child with microcephaly, you can have a child with developmental delays and that it is not the end of the world.  Sometimes I want to shake people and say "Look at my kid!  He is not perfect, but he is perfect to me!"  Don't act like this is a terrible place to be, because it isn't.  Look at this face....  Life doesn't get any better than this!


I am going to finish this up now with a little quote from a piece I recently read on facebook...

I love my child with an intensity that you can only imagine.
If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me.
Celebrate with me, rejoice in who he is and who he will become...
but forgive me if from time to time I shed a tear for who he might have been.

Tuesday, June 21, 2011

Blood, sweat and tears!

That is what milestones are made of around here.  Well, not too much blood, but sweat and tears, for sure.  It can be really hard to watch your child struggle with things that should come easily to them, things they should have been doing months ago.  Especially when they are visibly frustrated, upset and angry about their inability to do what they want.  I was going to post a video of Joshua from today, in his bed, desperately wanting to reach out and get something off my bed side table (his bed is currently in my room)  He was trying so very hard to pull himself up on the toddler rail so he could reach out for a bottle of baby lotion.  He wanted it so bad, and I was encouraging him but he was crying his eyes out.  Trying so hard, and then throwing himself back on the bed crying, then getting back up to try again.  It can break your heart.  But yet we keep pushing through, onwards and upwards and each day we are a little bit closer than the last.

Previously, I posted that I hoped Joshua would crawl by his first birthday.  He started army crawling at 11.5 months which was a big break through, and since then he has been getting faster and faster and able to cover more and more ground, but at 13 months, he is still not crawling on all fours.  I don't think we are too far away though.  I have been working with him on crawling intensively over the past few weeks.  He is getting himself up onto all fours quite frequently and rocking like a mad man, but my mission has been to show him how to use those arms and legs to get moving.  So, I quite literally get down on my own hands and knees and move his body for him.  Arm, Leg, Arm, Leg.  I know it is starting to sink in, because in time he starts trying to move them voluntarily.  As part of this "crawling therapy" I have also been working with him on pulling up on things.  To do this, I help him to crawl on his hands and knees over to an object and then show him to put both hands up on it.  I then show him how to move his legs in until he is kneeling and holding on.

My strategies are definitely working.  Today, he army crawled over to his ball pit, put his arms up on it and then struggled with his legs until he managed to bring them in and kneel at the side of the ball pit and play with the balls.  I am seeing a lot of new things over the past week or so actually.  For example, he is now able to hold himself on all fours and then lift one arm up to do something (play with toys in a box etc) Today, Rod was laying on the floor and he army crawled over, put both hands up onto Rod and then pushed himself back into a W sit.  He went down and up that way several times.  After he masters crawling I am hoping that he will begin to get himself into sitting independently.  (proper sitting, not a W-sit).

Next Monday Joshua will be having his next developmental assessment.  I just had a look at the 14 month ASQ-3 Questionnaire (which is used for ages 13 months 0 days to 14 months 30 days) and it is not looking too good.  I know I said that last time about the 10 month old assessment and it worked out better than I expected, but I am serious this time.  Many of the Categories I scored him at a 0...  For example...  Gross Motor....  If you hold both hands to balance your baby can they take several steps without tripping or falling?  NO.  When you hold one hand just to balance her, does your baby take several steps forward?  NO.  Does your baby stand up in the middle of the floor by himself and take several steps forward?  NO.  Does your baby climb onto furniture or other large objects such as large climbing blocks?  NO.  Does your baby bend over or squat to pick up an object from the floor and then stand up again without any support?  NO.  Does your baby move around by walking, rather than crawling on his hands and knees.  NO.  The other developmental areas are much the same.  If it is not a straight zero, then he might score a 5 in a couple of categories...  (which means out of 6 questions there was one 'sometimes' answer.   It wouldn't be quite so bad if he was assessed with the 12 month old questions, but it states that 13 months old comes under the 14 month old questions...  (It hardly seems fair...  LOL)  Anyway, I was concerned that at the last assessment he would be referred out of the Children's Development Team and into Carpentaria Disability Services.   She told me that for that to happen he would need to score 15 or less in 3 or more areas..  So, I will be shocked if that is not the case this time.  However, I am not concerned about this prospect anymore.  This past term of Baby Group at CDT has been quite disappointing, I really got nothing useful out of it from the therapists that were running it this time.  I am hoping next term it will be back to the PT we had last time and she is excellent, though the advantage of him being referred is that we will likely receive better services.  (More detailed one on one therapy etc..)

My other concern with Joshua at the moment is with his legs, or specifically his ankles.  I feel like they are pronating quite a lot.  This was the case at his last assessment but at that point in time I was advised to provide him with hip support while standing to ensure that he was bearing weight equally through both legs and that hopefully that would fix it.  I don't think it has, if anything I think it is looking worse, so I am really starting to wonder if he would benefit from Ankle-Foot Orthotics (leg braces).  I am going to bring this up  next week with the Physio, because if she agrees then I would like to get the ball rolling as our next hospital appointment is on the 8th July.  And given his current progress, I think pulling up to a stand independently will be on the cards in the coming months and with the way his ankles are at the moment, he lacks stability.  Here is a photo of his ankles.  You can see they are rolling in, especially the left one.  He also curls his toes under while he is standing.


It makes it very hard to stand up.  The other thing I am noticing is that the muscle tone is his right leg is starting to become quite prohibitive at times.  For instance when he is working hard to support himself with his arms that right leg is locked tight and virtually impossible to move (bend).  I know his exertion when he is trying hard to do something increases his tone, and it should improve as things get easier for him to do, but at the same time, this is the first time I have really noticed the tone preventing voluntary movement while doing something.

In terms of his hands and arms, he is definitely using his right hand a lot more.  Where once it used to be more of a "decoration arm" it is now doing a fair amount of work, despite being developmentally behind the left arm.  

I am planning to ask both the Physio and the Doctor at our upcoming appointments about whether or not they feel Joshua will receive a Cerebral Palsy diagnosis.  It certainly doesn't change anything, but I am one that likes to just say it like it is.

So, I will update again after his assessment next week.  Unless of course anything exciting happens before then...  like..  CRAWLING. :)