Coming Up for Air?

we-love-a-child-with-fasd-6By FASD_Mum

And, breathe…

Five days.  Five days without one meltdown.  Five days without our son on the floor pleading with us to stay home. Five days without having things thrown, without anything broken.  Five days of this slight loosening of the grip on our chests.  Five days so far at his new school, and we are starting as a family to come up for air.

We know these are early days.  We expect to hit bumps on the road.  The week has not been easy for our guy, we see that on his face where he has been biting his lips which are sore and raw.  He has had so much to take in, so much to absorb.

And yet, there is a peace about him, a contentment that was not there a week ago.  He has come home each day tired but calm.  He doesn’t have much to say, this process is being internalized.  When we ask him, he says his new school is good and his lips are sore because of the cold outside.  We see he needs not to be peppered with one hundred questions.  We sit close.  We rub his feet.  And we wait for a meltdown that just doesn’t come.  We breathe in.  And we breathe out, a little more relaxed.

There are surprises. Already the education is breaking through. The first day he tells us they watched a movie, “The Tempest” by William Shakespeare.  He corrects my pronunciation of one of the German composers.  He pulls out a keyboard that hasn’t been used in ages.  He has been painting, bringing out games he has not played in ages.  He records a TV documentary about WWII and lays on the couch and watches it two afternoons in a row.  Plopping on the couch and watching TV may seem mundane to some, or even your parental nightmare, but in our house, this has never happened.  He has not previously chosen an educational program, and just watched it for an hour.  This is the sort of quiet that has descended that we are not sure if we can trust yet.  Perhaps, once it all stops being so new at school then he won’t be so tired and we may yet again see the after school ramped up behaviors.  Or perhaps not.  But for now, we have space to breathe deeper, lungs starting to expand.  We know enough to hang onto such moments.

Perhaps being around teachers who understand him, who listen as he sings, and who spot his growing distress due to the noise in the wood shop and who take him out to a quiet space matters.  Perhaps being in a place where he can pop into the sensory room at lunchtime and play with Orbeez matters.  Perhaps being allowed to wear hairclips in whatever way he wants to keep his growing hair out of his eyes matters.  Perhaps petting the school dogs and feeding the guinea pigs matters.   Perhaps not having to wear a tie or an uncomfortable blazer matters.  Perhaps not hearing loud bells ringing every hour and not having to face a huge scrum in the hallways several times a day matters.  Perhaps, and we hadn’t anticipated this, focusing on Candy Crush during the 30-minute drive in the car to get to and from this school matters as it is providing him transition time that he lacked before between home and school.

He is going to sleep on his own again, he doesn’t need me by his side to unwind at night.  He is not as oppositional, not so easily discouraged.  OK, he is learning some new vocabulary and occasionally using it.  A couple of the other kids who have less social boundaries bewilder him – he is not used to kids wandering during lessons, using curse words and not being sent out of the classroom.  But if something confuses him or throws him off, he recovers more quickly now.  Not everything is sending him into orbit.  I feel the hypervigilance we had been living under is slowly beginning to melt away.

Our relatives are rejoicing.  They tell us they have not seen us look like this in ages.  They see a glimmer in our eyes that has been missing for some time.  We are still a bit stunned.  Not yet fully relaxed.

People are asking if we wish we had done this switch sooner.  The answer to that is that we needed the past year so he could benefit from the expertise of a seasoned and experienced SENCO, deeper insights from teachers and the teaching assistants who worked so closely with him, and the pile of reports done by others they brought into in the secondary school to give us the missing in-depth specialist assessments – detailed pieces of the puzzle that we lacked previously.  These evaluations enable us to understand his educational profile better than those that we had in hand from the primary school.  They also provided the convincing body of evidence needed to enable the powers that be to make a quick decision to move him to special provision.  So his time in the mainstream school was useful to him and to us, even as it was hard.  But we are very, very happy to have found a place that seems to be better meeting his needs.

We are not sure what to expect this weekend.  I am guessing there will be a release of tension at some point.  Things may yet sail across the room.  We will do our best to get him some physical activity, to keep things positive, to keep pressures at bay.  I hope we can see him laugh.

But five days…I will hold onto that.  Who knew five consecutive days could be had without that heart-wrenching dysregulation that had become commonplace in our home?

I, for one, had not realized that we had forgotten how peaceful it can be to simply breathe without waiting for a crash or a bang or other signs of a small, pressured soul poised ready to explode.

I hope, I hope, I hope that we are breaking free of those times.  But I am sure we must be vigilant and protect these hopes from disappointment.  I am sure we are not out of the woods.  FASD is a hard, brutal taskmaster – throwing many hurdles in the way time and time again.  But five days…they mean something too, and we have to celebrate when we can the successes that come our way.

 

 

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8 thoughts on “Coming Up for Air?

  1. I’m so happy for you. I know that feeling. Nathaniel started SEN school in September this year. And the change is amazing. Yes still have some meltdowns, no its not perfect but after half term he went back without the mainstream meltdowns, without the build up days before because school was looming. He has had blips, he has had meltdowns at school but not long drawn out, ongoing. Being able to leave the classroom and go to a quiet space, or to see another member of staff to regulate has made so much difference. While walking to the minibus to go to school, he moans, asks why I moved him, complains that he has to leave earlier to go to this school. Says he does not want to go to a special school, he does not want to be special. But it’s just words (I listen and explain) not lash out, violent outbursts, not refusing to move, having to be carried. It’s so much better and as you say. For the first time he is learning, he is working at school, he is completing work. Long may it continue for both if our families. Hugs and love x x

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    1. So pleased to hear that Nathaniel is doing so well, those past days you describe sound so familiar. It has to help to have the pressures lifted and to be with people who understand. As you say, long may it last! All the best.

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  2. You are so lucky to find a nice school were the handle children with fads my 12 year old his find so hard. We’re to you stai I’m in Midlothian

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    1. Hi – it seems like it is a bit of luck for us, really. So sorry your child is having a hard time. I know how difficult that can be. I am sending you a private email.

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  3. and now im crying for you a with happiness not sadness. as parents we know our kids are not bad and here is your guy in another environment and all the good can finally come out. of course it wont all be plain sailing from here in but it should never have been the storm he has had to endure at school thus far. looking forward to more updates

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  4. I’m so happy for you and your family!! We are forever greatful for our kiddos special day school (we are in the US), she has been there almost a whole year now. At the beginning of this school term our kid got a new teacher. We were nervous about the new teacher, but this has been by far the best school year she has ever had.

    Our kiddo is much younger than your son, at only 6 years of age. She has been in some form of special education since she was 3 years old. It was actually her first teacher that asked us if she had ever been diagnosed as FASD. Since we have personally known our kiddos birth mom for years we knew for sure she was alcohol exposed. When we looked up what FASD was we knew it all made sense.

    I’m praying and hoping for you all that you continue to see improvements like we have. I’m going to follow your blog!! I actually found you because I was looking for images to use as my banner on my blog.

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    1. That is so good to hear that you were able to receive a diagnosis so early and that you have found an appropriate school…we were told by the head of the school our son is now attending that she feels the earlier the kids come to them, the more they can do to help. Would love to follow your blog when you are up and running! Thanks for reaching out. We’ve had a couple of hiccups here and there since he has made this switch (it’s a whole new environment for him, he’s on a steep learning curve), but we’re still very pleased with how things are going. The tensions at home have lessened a thousandfold.

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