My older four kids, by the time they got to secondary school, had an idea that they were at school to learn, that there was satisfaction in a job well done, and that skills and knowledge had advantages down the track.  I guess because of his FASD Seth doesn’t look past today and certainly has no sense of the big picture.  Telling him he needs to learn maths this year so he can do next year’s maths and maybe go on to do a computer course at College (which will require some maths) just doesn’t convince him. And even if his homework is relatively interesting and stimulating he is not easily engaged.

So in the end I have to resort to bribes and threats.  Mostly this revolves around his computer time, the currency that means the most to him. I’ll put a note on his computer screen saying “You may go on the computer as soon as you finish your cultural project”.  He’ll argue and whine and attempt to negotiate – “I’ll just play this one game then I’ll do my homework”, and I try to stay calm and consistent and remind him that if he quickly does his project now, with me helping him, he’ll be done in an hour and can go back on the computer.  Instead he gets upset, slinks off to his room or goes out on his bike, returns later and starts the whole argument again.  By the time he realises there’s no alternative he’s in such a cranky mood that he puts little effort into his work, needs to be guided through step by step and ends up with a very poor project which he has no pride in and usually ends up forgetting to hand in on time!

I’m feeling very frustrated with the situation, and wonder how we’re going to get through the next few years working this way. I can’t see Seth learning anything through his homework and his immature attitude seems to be worsening with adolescent defiance, not improving with the acceptance and wisdom of age which I noted in my older “neurotypical” teenagers when they got to this age.

Some people tell me that homework should be his problem not mine and that I should let the school deal with it by giving him detentions and suchlike.  But Seth isn’t good at understanding consequences and I feel like that will just increase his anxiety about school and his reluctance to be there. We step on eggshells with these kids.

Anyway, I’d best go off and finish the housework. Seth will be home from school soon and the two of us have a lot of homework to get through tonight.

Home schooling Seth with a toddler around was difficult enough, but we were renovating at the same time which added extra noise, mess and stress to our lives.  I was so busy most of the time keeping Angel out of trouble as our old kitchen and family room were slowly demolished that I often had to leave Seth working alone, usually on the computer, which meant he never got much work done.

When Angel went off for a couple of hours access or went down for his afternoon nap I attempted to spend some active learning time with Seth.  But wouldn’t you know it, that would be the time the builder would call me out to discuss some tedious but important aspect of the renovations. By the time I got back to Seth he’d lost the little bit of enthusiasm we had built up and I’d wear myself out trying to reignite his interest, usually to no avail.

Is this typical of kids with FASD do you think?  Seth is very difficult to engage, and he doesn’t possess a lot of curiosity about the world.  He showed a little interest in a few aspects of bodily function (typical of a twelve year old boy) so I went out and bought a rather expensive and exciting book (a DK book called “ALIVE – the ultimate pop-up human body book”).  I figured even if we just read it together and explored all the little pop-up sections and the working bits he’d learn something about how the body works, but getting him interested was like pulling teeth!  I got excited about stuff I hadn’t looked at since year eleven biology, but he didn’t share my interest.  Even when I traced around his body (onto a wall that would later be painted over) and we used the book to draw in the main organs  in his body, he kept asking me how long was it going to take,  when would Portia be home, could he go and ride his bike…

In the end most of Seth’s learning came from his interest in computers and cameras. If I could use either of these in the process of him doing an activity it would be a little more successful than if I didn’t. (Thank goodness for modern technology!)  He shares these interests with his big brother and they spent one day together in early December making a video for a competition run by Big Brown Box. Wasn’t Seth thrilled when they won the competition and he’s now impatiently awaiting the delivery of a new computer as part of their winnings.

As much as I enjoyed spending time with Seth during his homeschooling stint (but feeling forever guilty that I wasn’t teaching him enough), I must admit I was glad when mid December came around and we decided it was time for him to graduate from Primary school. Our State schools don’t break up till a few days before Christmas but the private school system tends to finish a week earlier – so that’s the timeline I followed.  The whole family went out to dinner, we presented Seth with a certificate and a book and he began his seven week break before commencing  Secondary School the first week of February.

Just two days before Christmas our renovations were all complete including the new kitchen and an enormous under cover deck which is perfect for family gatherings and a great place for toddlers to play.  We set up a plastic cubby house for Angel and bought him a ride-on tractor with a trailer. After months of not being able to let him outdoors to play, except out the front on the asphalt driveway,  I could now just close the child-proof gate and let him wander in and out as he pleased.

Not for long though. Soon after that was Angel’s court case, and a decision was made that he would go into his Grandmother’s care after four weeks of transition which included increasingly longer overnight stays.  So during the end of January and the first few weeks of February Angel spent most of his time with his birth family, coming back to us for a few days at a time before returning to Grandma again.  He seemed fairly settled in both homes, although he was always very excited to return to us and cried quite pitifully when the worker took him away.  But the reports from his protective worker were positive and she felt he was building a good relationship with Grandma so when it went to Court on the 18th of February custody was awarded to Grandma and he returned home the next day.

Life is quiet without our lively little boy, and at times I miss him terribly, but I reminded myself that the outcome of reunification is what we as foster carers strive for.  But it’s hard parenting a baby for nineteen months then having him leave.

So now we’re taking a break from fostering and I’m having a catch-up time.  Portia and Seth have been at school for six weeks, and Angel’s been away for most of that time.  With the renovations complete I have a few building and cleaning and sewing jobs to complete which would be impossible to do with a toddler around.  I hope to cross them all of my list by the end of term as we’re going camping for a week over Easter and when we come home I’ll let the agency know we’ll be available for placement again.

In the meantime I’ve been doing a bit of extra training, mostly around infant care, although we’re looking at taking on a toddler to preschooler next time rather than another little babe.  I’m rather keen to try out all that training I’ve done (including  seminars by Bruce Perry and Kate Cairns) on reparenting the traumatised child and building up a relationship with an unattached child which will be much more pertinent to fostering an older toddler than a small baby.

Meanwhile, I have plenty of time to read my favourite blogs, and no excuse not to regularly post in mine!

I worried that it didn’t fit the recommended criteria for a classroom suited to kids with FASD, being fairly open and stimulating with a busy, flexible time table but I hoped that the very experienced and creative teaching would make up for that.  And in some ways it has.

Seth was homeschooled for half a year before attending this school after we pulled him from a state school. The state school just wasn’t meeting his needs and his self esteem and interest in school were definitely affected, but at that stage we didn’t have a diagnosis of FASD  (specifically ARND)  so we didn’t even understand what his needs were.

Our six months homeschooling was not all that successful as I had a lot of difficulty motivating Seth, keeping him on task and providing him with the peer socialisation he craved back at his old school with all the mates he’d known for five years. So this little school which two of our older children had attended happily for a few years seemed the answer to our problem. Seth settled in fairly happily, made friends, and started to develop a more positive self image and attitude to school.

But there have been some problems, mostly of a behavioural nature, and I’ve occasionally blogged about them. Seth, typically, is impulsive and not very aware of the appropriate nature of his actions. He’s not aggressive or violent, but he is a dare devil and an adventurer. He doesn’t see why he shouldn’t do things that are exciting even if they are inappropriate.  Being out-of-bounds, taking art supplies from the classroom, buying his friends drinks with money he shouldn’t have had, are just a few of the incidents he’s been involved with lately.

Nothing he did was done alone.  He always had other kids happy to join him, and maybe sometimes they even instigated the activities, but it seemed Seth was a common denominator.  What is more, once he was caught out Seth became quite angry and defensive and, if overwhelmed, he’d simply run.

The final straw occurred while he was away on a two night school camp.  We received a phone call on the second day asking us to come and pick up Seth as he’d got into a bit of trouble. He and another kid had been reported to “joke” about getting up in the night to damage a teacher’s car because she’d yelled at them.

Hubby picked him up.  Seth was upset and wouldn’t get out of the car once he arrived home, but I talked him round and he came inside but refused to talk about what had happened.  Over the next few days I tried to have quiet little discussions with Seth about all the incidents of the past few weeks. Some he told me about, others he denied, and some he just seemed to have forgotten!

On the Monday we had a lunchtime appointment with Seth’s teacher and the principal. It wasn’t good.

They won’t have Seth back as they feel his behaviours require too much teacher supervision and intervention and impacts on the other kids too much. In a very democratic and free school like this Seth is not a good fit.  I understood but I was devastated anyway.  Where to now?

We had hoped that Seth, who is actually due to move up to secondary school next year, might have had one extra year at primary school to help him learn a little more and be a little better prepared for the transition to a new school.  Given that is no longer an option we’ve decided to enrol him at our local secondary college for next year and fill in the next term and a half with homeschooling again.  There seems no point in searching out another school for just four months, so again I face the daunting task of teaching a child with significant learning difficulties, this time with a distracting toddler running around.

The local secondary college he will be attending has to apply for educational funding for Seth on the basis of the various assessments he’s had in the past eight months.  The more funding he gets, the more time he’ll have allocated with a teacher aide.  I know he can only work with the constant attendance of a patient adult, so I’m hoping our application gets a good response.

The school will also modify the program for Seth. Instead of a second language he will be in a small group for remedial English.  He will have his own maths curriculum to follow (probably based on the grade four program) and he will not be expected to participate in the whole grade activities, although he’ll still be in the classroom. I will put together a kit about Seth specifically, and FASD in general, and have been promised all teachers in contact with Seth will be advised to read and learn from these, so I hope that does really happen.

I’ve also asked that they build in some structure to his recess times, explaining that such free time is when he gets into strife.  They talk about directing him into the optional lunchtime activities, such as roller skating in the gym, juggling class, handball competitions, and library sessions.  They will also keep an eye on him and monitor the kids he hangs out with, knowing how easily influenced he is.

Seth himself knows that unstructured time is a danger to him.  He admits that having unsupervised time goes to his head, that he looks for interesting things to do and that he gives no thought to what will happen afterwards. On that basis I hope he is co-operative about having his time structured for him.

Meanwhile, he is home with me all day with twenty four hour supervision, so he isn’t getting into any trouble at all.  We run our classroom fairly loosely, basing our time table on Angel’s sleep times and access visits (for which he is picked up and returned home, so I don’t have to leave the house) .  During these times I give Seth specific instruction in language and maths while we are both able to focus (I’m certainly a lot more focused than he is!) and then the rest of the day while the toddler’s roaming about the place we do cooking, crafts, reading, board games, walking and some shopping and cleaning. On Wednesdays he comes to Playgroup with me and either reads in the car or plays with all the little kids.

He takes regular breaks throughout the day to do a bit of gymnastics (the mattresses from his bed stay permanently on the family room floor) or skateboarding out in the driveway.  We are renovating at the moment and his latest fun game is to skip about on top of the joists of the unfinished deck, throwing in the occasional handstand. He is happy and contented, relatively co-operative and enjoying his days with Angel and I. I don’t know if this relaxed school style will make it harder for him to transition to high school in five months time, but I’m not going to worry too much.  I’ll just relax too, and enjoy this extra time with my sweet boy.

Well, I was momentarily flabbergasted as this is not typical of Seth’s behaviour.  Despite having FASD, stealing other people’s stuff has never been an issue although I have suspected him of sometimes taking the odd coins laying around.  Rather than making  accusations on those occasions I’ve given the talk about how I need to trust other family members not to take money I leave in places like the car, or the zip pouch on the pusher, so I was surprised that Seth would steal so publicly.

Before driving away from school we discussed the incident, and it seems that, despite a little embarrassment, he was not too concerned about what he did.  I felt better for it having been a group crime – he and another boy had each stolen a five dollar note while a couple of others watched out for the return of the office lady. At least it spreads the accountability around a bit.

Remembering a find I made while doing the washing a few days previously, I asked Seth what he’d done with the money.  He was a little vague about this, replying that he must have spent it at the milkbar or something.  “Surely you’d remember spending five dollars…”, I prompted (while recognising Seth’s memory deficits, surely spending a ‘windfall’ of five dollars on chips and lollies would be memorable within the last couple of days).  “I don’t remember ” he replied, with no concern.

“Well” I said to him, “I’m just wondering about the wet five dollar note I found in the washing machine the other day.  I guess it must have fallen out of someone’s pocket. I was wondering whose it was.” His eyes lit up and he exclaimed “Oh, yeah, so I didn’t spend it.  I can take it back to the office tomorrow”.

I questioned him then about how they were found out and whether there were other consequences to their crime, apart from paying the money back.  It seemed one of the “watchers” felt guilty the next day and told his mum what had ensued so she’d rung the school.  Seth and the other young boy were drawn out of class separately to explain their case and given a little talk about stealing and trust, but there were no disciplinary procedures except to talk to their parents about it and to return the money.

I discussed this issue of trust with Seth for a while but I found it quite frustrating as he just didn’t seem to care or understand that others at the school may not trust him now.  I even did a bit of role playing suggesting an example of a friend who won’t let him near his bag in case he steals from it, but Seth just thought that was silly….”My friends know I won’t take their stuff”.  He was more troubled when I pointed out that he won’t be able to collect and count the money on “special food Wednesdays” any more so I laboured that point for a while in the hopes of him developing some sense of the consequence of his misdemeanour.

Then I asked him “So if you weren’t planning to spend the money, why did you steal it?” and he replied, ” It was exciting and we wanted to see if they could catch us!”

Although this is what I’d expect from my dare devil son, it worries me like hell because he’s not even a teenager yet so how’s he going to be in a few years?  It’s enough of a risk for any young teenager, being egged on by his peers and wanting to impress, but how much harder for our kids with their fetal alcohol affected brains to make the right decisions when they don’t see the consequences and are impulsively seeking an adrenalin rush by taking exciting risks?

It reminds me of an article I read a while ago, possibly recommended by a fellow blogger, which described so well why kids with FASD are seen to have an under-developed conscience.  This helped me to understand better how a sensitive and empathic child like Seth, who has a great deal of compassion for animals and children suffering or in need and is always so apologetic if he accidentally hurts somebody, can show little remorse for some of his actions and how they affect others.

I was glad the teacher (his classroom teacher thankfully, the only authority at the school who Seth responds well to) had dealt with the incident in a low key manner, as blustering and punishing would simply have set up Seth for defensiveness and anger and caused behavioural difficulties with further repercussions.  She later told me Seth’s response to being withdrawn from class and spoken to was quite appropriate, and he was quite ok with the kid who had “dobbed” them in, understanding that it was the right thing to do.  He admitted that stealing was wrong, but didn’t really indicate why he thought so.  She certainly didn’t feel that it had kept him awake at night as it had done the other little boy who didn’t even take the money!

Seth’s been going well these last few weeks since school resumed after the term break but, with the school production and a two day camp coming up, there will be breaks to his routine and extra unstructured time so I hope he manages to keep on track through all these changes.  I’ll keep you posted.

Six pages into the report which detailed the assorted cognitive areas she tested I read the words I’ve been expecting for years….

Seth’s profile can be most explained by alcohol related neurodevelopmental disorder [ARND]….

Apparently a definitive diagnosis cannot be given without confirmation of maternal substance abuse. Although there is no doubt his mother drank heavily throughout the pregnancy, we don’t have written evidence of this.

But here at last is an explanation for all the difficulties Seth has experienced throughout his school years and hopefully I can now say to teachers and any others who have contact with my son, “this child has fetal alcohol brain damage, this is how it has effected him, and this is what you need to do to ensure he has the best opportunity to learn” (and hope they will listen to me).

When Seth entered our lives barely six weeks old and less than seven pounds, despite being born pretty close to full term, we had no idea of the distress and joy this little boy would bring to our family. It started as a one week voluntary placement by parents both suffering from alcohol dependency who were unable to deal with the constant crying of their baby suffering from alcohol withdrawal. One week turned to two, then Human Services became involved as the parents weren’t attending access visits or responding to the social worker’s calls. Weeks turned to months and Seth saw his family only twice after entering care. They eventually faded out of his life altogether. I have had some written correspondence with his mother. I think she is glad her little boy is in a safe, loving home away from the alcoholism and domestic violence that would otherwise have been his experience.

I was the one to take baby Seth to the Children’s Hospital to test for Fetal Alcohol Syndrome (FAS). The geneticist who performed the examination reported that although he didn’t feel that Seth had the facial appearance consistent with FAS, his small size and the history of alcohol exposure were very suggestive of it. Six months later a pediatrician’s report stated that Seth was

at moderate to high risk of having some difficulties associated with FAS/E [Fetal Alcohol Syndrome/Effects].

By this stage Seth’s early distress and dysregulation had abated and he was now a sweet, happy almost one year old who had a special spot in our family. We applied for Permanent Care so he could remain in our family forever. Whatever the future brought, we would be there for him.

During his infancy and preschool years Seth demonstrated timely development in most areas with a few problems around speech and, later, fine motor control. As we accessed services to help him in these areas I continually questioned the possibility of fetal alcohol effects, but the professionals did not seem to know their stuff too well. Replies were usually like “but he doesn’t have the FAS look” or “He’s bright enough, he has a normal IQ” and at age four and a half he did fall within the average cognitive range when tested with the WPPSI-R (a common preschool IQ test). We continued to attend to individual difficulties as they arose.

Preschool and the early years of primary school went along smoothly enough. Seth was always a little behind his peers in any academic areas, but he was a sweet responsive boy who caused no trouble in school so he didn’t attract attention. I noticed he was harder to engage in reading and word games, number puzzles and suchlike than the older kids had been. But he was an active boy who loved bike riding and climbing and performing handstands and cartwheels along the footpath, so his resistance to anything requiring brain power just seemed part of his personality.

By the time he was eight or nine however, we started to notice some puzzling aspects about Seth. Not only was he not learning to tell the time, he didn’t even seem very aware of the time throughout the day, unsure whether it had been lunchtime yet, or when it was time to come inside at the end of the day. Even the seasons and months of the year seemed to baffle him. Time spent on simple maths facts and times tables while walking to school or driving in the car were repeated day after day, with no sense of him getting it. What is more he was less cooperative about spending time on these activities and sought ways to avoid them. At school his teacher found him reluctant to try new activities, hard to motivate and hard to keep on task.

We organised for an educational assessment to be done when Seth was nine and a half and at the end of third grade. It indicated his IQ was in the low average range and that he had some specific learning difficulties in reading and spelling with poor visual memory and weak processing speed. The report concluded with a number of recommendations and suggested classroom strategies which I was able to take back to the teacher. Over the following school year some individual intervention in phonic based reading was provided at school and at home I put him through a similar phoneme based program called Phono-graphix. We did see a little improvement but by the end of grade four Seth had slipped even further behind his peers in all academic areas.

At this point I was really starting to feel concerned for my little boy, now ten and a half years old. Not just because he was doing poorly academically, but I could see his self esteem falling too, and he was often frustrated and confused in the classroom. Some behaviour problems were also starting to emerge in that Seth was becoming a little defiant at school and would sometimes run off from teachers when they were disciplining him. I had a few discussions with the Principal but felt that the school was not able to meet his needs. But then I wasn’t really sure what his needs were.

As Seth started fifth grade I felt trepidation for the coming year. He seemed unsettled, complained about not being able to do the work, told me he was dumber than the other kids and chose to work at home with me regularly (over the years we had often had the occasional ‘home schooling’ day to give him a bit of a break from the daily grind of school) . After an interview with his teacher, who had taught him the previous two years and was really concerned for how difficult he was finding school and how much he was dragging behind his peers, I made the decision to withdraw him from school for a while to try full time home schooling, and pursue a diagnosis of a Fetal Alcohol Spectrum Disorder (FASD) in the hope of finding some answers to the difficulties he was experiencing.

That was one year ago. Home schooling was not completely successful. Seth changed his mind so many times. He would remember the fun times, break times out in the playground with his friends, socialising in class, friends that helped him with his work and he’d forget how discouraged and frustrated he’d been.

Sometimes he would beg me to let him go back to school. He would nag and nag all day, completely unable to focus on any activity, fall apart in my arms, but I knew returning to the state school was not the answer. Their overworked teachers, large classes of 28 kids and lack of interventionist resources meant they could not meet Seth’s needs. If he let me, I knew we could be successful with home schooling, but he resisted most days. He was difficult to motivate, needed my constant attention to get a task completed, refused to get involved with local home schooling groups and hated all the assessments the paediatrician was putting him through in our attempt to gain a diagnosis.

We were starting to doubt whether this was going to lead us anywhere but we stumbled upon a service that we hoped might give us the answers we were looking for. I’ll talk about this more in my next post.