Tuesday, May 12, 2015

school rewiring stress


7 my boy goes to big school  /   rewiring

I was really at an all time low, especially since St Patricks Day.
I was so upset as L is amazing, he is everything a mother dreams of in a child, handsome, happy, strong, affectionate all of this, yet he seems to stay at a level for such a long time, progression is not something that comes easy for L it’s a snails pace progression, this upsets me as all the work, effort and time everyone to do with L puts in, it’s still not enough to speed things along, it stays at a pace that drives me bonkers. I don’t want to rush him by any means and im not looking for a fix but you do get worn out with phases, esp shit smearing phases and aggression phases.

I remember after L’S first ever seizure seeing huge immediate improvements in L’S intellectual development. His eye contact improved, his receptive language skills improved, he vocalised more all of this but yet I taught it was coincidence, and how could something so horrid actually benefit a small child.

I remember thinking another time that L must have had a seizure as something was not right when I found him in the morning, but he must have been well over the seizure as very little evidence he had one, again, improvements, major ones.

This seizure just gone, I knew for definite that these seizures are like a rewiring job on L’S brain as the huge improvements where not only visible to me, but to all who know and work with him. He’s like a different child, he seeks interaction and seeks kisses and cuddles. He is flying with P.E.C.S exchanges for everything, food, toys, everything. He is more tolerant THANK GOD of his brother and his mental tone of squeals, crying and laughing. He is trying different food textures, he is trying to do so much more for himself, his vocalising and interest in vocal sounds is really a huge thing, he now puts his hand on your lips and throat to feel the vibrations when you sing, he is just a different child.

It is so strange how our bodies work. A seizure is such a traumatic, frightening and heart stopping event and yet it is doing my son the world of good. I will never understand this and I still would never wish another seizure on my son but I’m not so frightened of them any more, I’m comfortable knowing that it is in a strange way helping him and not harming him at all.

I was so proud and happy to watch him playing with my friend the other night. He gave kisses, cuddles, and interacted with her for ages, he gave her amazing eye contact, he has known her for 2 years and she would never pass by him and not greet him, yet she knew she would never be greeted back, and now he’s on her lap cuddling, looking for tickles and shock of all shock, he allowed her to squeeze his HEAD, this was never allowed by anyone but me and his OT, he requested her to squeeze his head. I was gob smacked. This was huge.

I’m so happy that L is coming on so well, I’ve been waiting for this type of progress for a very long time, we all have. He has his EEG in May and I cannot wait to ask some questions and hopefully have a better answer to what is actually going on with him.

Big boy going to school

So we won the fight to keep L out of a mainstream school but lost the fight to keep him in his resource centre/playschool.  L was to start in an ASD unit, this unit is an hour away from me, and because I refused a local school they refused me transport.  Cause like how dare I put L in the most appropriate school for his needs like, oh the cheek of me.  I did receive some shitty grant though but yea was a pox. 
So he enrolled on August 31st and started Sept 1st, yes it was THAT mad.  You’ve no idea the shit we went through at this time.  L loves school; the drive however is killing me.  L misses a full hour of school every day as I have to bring K to school and R to playschool before L can get to school, did I mention its an hour away.  Exhaustion, but he loves school we will persevere.  My friend starts working with L every day as he is a psychologist.  He helps me out by doing some of the driving with me.  Thank god as it was impossible. 

NEVER ENDING

I got some of K’s stuff going on, her appointments are killing me, she’s killing me and all going on in back round of it all killing me.  , I got Lunatic john’s results from the hospital, all clear so that was a huge stress laid to rest and a major relief. But with good news comes bad also. The doctor went over the history again, he pointed out that R is very loud and over hyperactive. He especially pointed it out to me after R almost smashed his flat screen computer monitor and then broke his blood pressure thing (again) and as he was picking up all the stuff from his desk that R flung off it, he explained that R does not eat enough to burn off so there fore he is burning off his muscle tissue also. If he does not calm down and start gaining weight that he will need to be put on a special drink to help him gain weight. They are very concerned with the over hyper activity and have mentioned those lovely magic 4 letters, adhd and will bring him in and monitor him every 4 months. The squeal and loud shouting is also a behaviour associated with ADHD and spectrum disorders but they have completely ruled out asd. So yet again I am faced with more problems.
Great, just the news an already stressed out, exhausted, emotionally, physically and mentally drained mother wants/needs to hear, I think G is just praying that he grows out of these behaviours and he calms down and is just problem free, in my heart I am too, but in my well tuned brain, I know what’s coming in a few years.  Assessment of need is looming, AGAIN. On a good note lol, L also got results back from the hospital, ah yea, one hospital in Galway and the other in Dublin; I’ve been clocking up some mileage these days. L is cast free and will get away with one round of Botox, thank god as those casts where like deadly weapons. L knocked me on conscious with those things during a playing session one morning; imagine if it was R’s head, well actually L probably could more than imagine it being R’s head LOL


I’m trying to stay positive and keep my head in a good place but it’s hard, really hard. I have a lot of baggage with me that is really hard to leave behind. I have major guilt issues, failure issues, confidence issues, so much going on inside this head of mine. 


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