Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Early Intervention

Taking a break

with 7 comments

Today I’m taking another break from the essential.  I did it yesterday, and I’m doing it again today.  Yesterday Pudding didn’t go to her weekly speech therapy session.  Over the weekend she’d had a nasty allergic reaction, and then another reaction to the Benadryl.  She’d had a bad night and though I sent her to her half-day of school, I called in sick to the therapy session.  I think it was the right move, by afternoon she was fading fast.  She was content while drawing on her Aquadoodle mat, but anything else was beyond her.  Her body was out of sorts, and she needed the day off.

In less than an hour I’m supposed to be at a class with Cubby.  It is a toddler group through the local park and community recreation service that we’ve attended twice so far.  It is great in theory: developmentally appropriate play with his peers.  It is exactly what he needs.  The problem is that is starts at 11, and Cubby is ready for a nap by 10.30.  Today he went down for a nap at 9.30, last night was another bad night.  I can, and have kept him awake for the duration of it.  I’ve watched him refuse to follow the play of the leader, refuse to interact with the other children, and throw a temper tantrum when he couldn’t do what he wanted.  I’ve watched that every week, and I know I’ll watch it every other week until we stop going.  I suspect, though I don’t know for sure, that he would do a lot better if this class took place at 9 or 10.  Normally I make him go anyway, because he needs to spend time with typically developing kids.  Normally I make him go anyway because paying for this for him means that we can’t afford the adapted gymnastics class for his sister.  I weighed up both of their needs, and put him first for once.  Normally, I don’t want to admit that I made a mistake, so I make us go anyway.  And all the other mothers tell me he’ll get better, and he’ll grow out of it, and normally I just nod and smile weakly.

Normally.  You see, Pudding and Cubby having bad nights is pretty normal around these parts.  We still do what needs to be done, go to therapy, go to playgroups.  This week though, we need a break.  Tomorrow we have Cubby’s full evaluation by Early Intervention.  This week Spectrummy Daddy has to go to Afghanistan for a few days.  This week Grandma is coming to visit.  Soon, but probably not this week, we’ll hear about where we might spend the next 2 or 3 years of our lives.  All of these things are throwing our routine out of sync, all of these things need to be prepared for in different ways.  This week is no normal one, even for us, so I’m cutting everyone some slack.  Most of all myself.  Pudding won’t stop speaking because she misses a session of speech therapy.  Cubby won’t become more autistic because he isn’t in a room with other toddlers.  I’m taking control of what I can, and taking a break.

I’ve had a couple of emails lately from readers who are new to this.  Who are feeling overwhelmed by all they have to do, all they will have to do.  I get it.  I’ve been there.  Occasionally I’m still there.  I’d love to say that feeling goes away, and perhaps one day it will.  I don’t know for sure though.  So I respond to them what I tell myself too: give yourself a break.  “Normal” service will resume in good time.  You can do this, just give yourself a break.

Written by Spectrummy Mummy

October 5, 2010 at 10:33 am

Take my advice…

with 9 comments

Written by Spectrummy Mummy

September 21, 2010 at 6:59 am

The Good, the Bad, and the Ugly

with 12 comments

Yesterday.  Wow!  I wouldn’t like to do another of those any time soon.  I’m still exhausted, and feeling a little sick.  Forgive me if this isn’t the most peppy of posts today.

Yesterday morning was Cubby’s screening by Early Intervention.  I was worried I’d called too early.  He has a lot of language, but there is something a little off about it.  That was my main concern.  During his last assessment at Kennedy Kreiger, he showed some atypical and repetitive speech patterns that gave the researchers cause for concern about his social communication.  He passed the EI screening for language effortlessly.  There is such a broad range of abilities at this age.  They moved on to screening other areas.  No problems until we got to problem solving.  He failed both tests, and launched straight into a tantrum when he couldn’t do what was necessary.  It is pretty typical behaviour for him, but I just hadn’t perceived a problem in that area.

The good news then, is that he will now go ahead to the eligibility panel and probably to a full evaluation.

The bad news is that there could be a cognitive delay, or at least motor-planning difficulties.

The ugly was when I had to go immediately to collect Pudding from school.  Her teacher, Ms. S., greeted me, told me about Pudding’s day, then asked how Cubby was doing.  She was greeted with the ugly cry from me.  A couple of quick hugs, some consoling words, and we were on our way once again to Pudding’s speech therapy.


No premanent damage- he'll still play the piano, or guitar, or drums...

Read the rest of this entry »

Written by Spectrummy Mummy

September 14, 2010 at 10:13 am

Making the call

with 8 comments

I finally made the call to Early Intervention, the second time around.  I’d been putting it off, telling myself it was too soon to tell.  Somehow though, those yellow flags are adding up, and I need to make the call before they turn red.  This time, actually making the call was easier.  I already had the number.  I already know the process.  I can use the right language.  The lady was lovely, assuring me it is never too early to call (it isn’t!) and that if Cubby doesn’t qualify now for services, we can follow-up again any time before he turns 3.  I was matter-of-fact.  Echolalia.  Good eye contact.  Following directions.  Hand-flapping.  Fan-staring.  Sound sensitivity.  Tactile sensory-seeking.  Spinning.  Bouncing.  Articulation.  Pragmatic language.  Sibling study.  I reduce my beautiful, blue-eyed charmer to these terms.  It is all that needs to be said.  I say it calmly.  She listens attentively, answers reassuringly.  I try not to look at him as I speak.  The whole conversation takes just a few minutes.

And when I get off the phone and I turn to him, that is when I let myself cry.  I don’t want to do it again.  What are the official statistics these days?  1 in 110?  1 in 70?  Not 2 in 2.  Not my girl and my boy.  Both of them.  I already feel that they don’t get what they need. It isn’t fair, but I can’t rage.  It could be so much worse, I know.  I’m being melodramatic.  I know it isn’t a diagnosis.  I know it is getting help.  Help that we need.  Help that might make a difference.  Help that we might not even qualify for.  It is just the first step, the first of many.  I path I’ve traveled down before.  This isn’t a disease, my kids aren’t broken.  Theirs is a peculiar mix of strengths and weakness, a mysterious pattern that is known to us.  It is familiar now, so it isn’t as scary.

He doesn’t notice that I’m crying.  He is playing with his new bus.  Appropriately.  Making the brrm-brrm noises as it passes over the carpet.  He looks just like any other toddler.  Am I projecting my fears onto him?  Could he just be imitating his sister?  Is it something I’m not doing right?  Is it something I’m doing wrong?  Just like the first time, I wonder if it is right to make the call.  And just like the first time, I feel like it is.  I don’t want to walk this path again, but that isn’t my call to make.

Written by Spectrummy Mummy

September 8, 2010 at 7:54 am

Cubbyhole

with 6 comments

Now, some of you may have noticed that there is another little person in my life who doesn’t get as much of a mention as his big sister. There is a Cubby-sized hole in this blog. It isn’t right. He deserves his own write-up.

I’ve been putting off talking about him, because I don’t exactly know what to say. Every time I write a post on WordPress, there is a place for me to ‘tag’ my posts and this puts them in a category. I don’t know how I’d tag my boy, and I don’t know what category I’d put him in. I used to think Aspergers was a binary thing, you have it or you don’t, but Cubby is pint-sized proof that this isn’t the case.

When Pudding was diagnosed, Cubby was only five months old. At the time I was angry with myself (and the world) that I’d missed things in Pudding that were suddenly so obvious. I was determined not to miss anything second time around. But Cubby, like his big sister, hit all the developmental milestones. Just like her, he was born liking fans and lights, and tactile sensory-seeking. Just like her, he developed separation anxiety at a very early age, and seemed over-attached to me. And just like her, when I mentioned these things to the doctors, they told me this was normal.

Even Dr. P, Pudding’s excellent, perceptive, developmental pediatrician has yet to see the signs in him, but referred us to a sibling study to monitor his development.

We’ve had two sessions of the sibling study at the Kennedy Kreiger Institute. Each one is a grueling seven hour assessment, and both times we’ve had to split the session over two visits. The first evaluation found him to be developmentally on target, but with joint attention problems. Joint attention is where a caregiver shows something to the child, and he or she acknowledges this and responds accordingly. Joint attention deficits are considered to be the first indicator of autism. Cubby had some joint attention, but hadn’t mastered it. We went to work on this, and by the time his second evaluation had taken place, he had age appropriate joint attention.

We aren’t allowed to breathe a sigh of relief though, because this time around they found problems with his social communication, something that had been one of his strengths at the first visit. At age 16 months he knows and uses many words, he is developmentally ahead, even putting words together, but there is something about his use of words that is slightly off, or atypical, to use the word which frequently describes our children.  I’m working on his pragmatic skills, and teaching him some basic sign language, which enables both sides of the brain to be engaged in communication.  Perhaps we can get him back on track with this too.  Or maybe there will inevitably be another sign emerge, and then another.

Only time will tell.

For the moment, he makes great eye contact, shares his interests and imitates in play. Our local Early Intervention services will only provide therapy if he has a significant developmental delay, or has a formal diagnosis. Saying that I think he could be spectrummy just isn’t going to do it!

The A-word isn’t so scary the second time around, but that doesn’t stop me worrying about my baby boy. This time we know what challenges may be ahead, and how hard it is going to be to meet them, with our increasingly limited resources.

In January we’ve got our appointments for his assessments, perhaps by then things will be more evident. Until then, he just doesn’t fit into a cubbyhole, he can’t be categorized. He just is who he is, and we love him for it.