Monday, August 2, 2010

We have some new words

No... not more of those words! We have had enough of those thank you.

Our new words include things like Attention Deficit Hyperactivity Disorder, evaluations, phonological learning disorder, poor fine motor control, occupational therapy, difficulty, delayed, psychologist, unable to, below age level, high intelligence, struggles, medication, Adderrall, proprioceptive input just to name a few.

Over the course of the last school year we had several meetings with Liam's teachers as we all knew that he was struggling to learn to read, pay attention and sit still. So in April we had a Psycho-Educational evaluation done by a psychologist. We were not surprised by most of the results. Liam's results spanned both sides of the scale. One one side he tested in the 96th percentile for intelligence, testing at nearly a 16 year old level for some areas. On the other side he tested in the 20th percentile and shows signs of a learning disorder. He was also diagnosed with ADHD. Around the same time he was also evaluated by an occupational therapist at school and shows signs of fine motor control issues that are causing him problems with handwriting.

Over the next couple of months we explored various options, including medication for the ADHD. We were able to test out Ritalin during the last 2 weeks of school and saw some improvement with Liam’s focus and attention. But we also saw some anxiety as we tried to get the dosage correct for him. By July we had gotten in to see a pediatrician, and we are now testing out a different, long lasting ADHD medication - Adderrall. It’s only been a week so far, but we have seen huge improvements in Liam during the day. He’s calmer, he’s focused but he’s still the fun loving amazing kid that we love. None of his personality is being lost or obscured by the medication. The down side is that since most ADHD meds are amphetamine based they do interfere with his sleep. So he is falling asleep later and later right now, even later then me the other night! But some minor side effects are worth it. Even Liam notices a difference with the Adderrall and is happy with how it is helping him.

Now that we have the medication under control (at least for now, we may still tweak it) we are focusing on the learning disorder side of things. The phonological awareness disorder means that Liam has trouble with the sound structure of words. He doesn’t understand that the same letter can have 2 different sounds depending on how it is used in a word. So words like CAT and KATE cause him great confusion. How can a C and K sound the same, and why does the A sound different in each word? He has a great memory, so we are working on a rote learning and phonics approach for word recognition. We know that it will be a long hard road, but we also know that we can conquer it together.

We are also exploring using sensory inputs to help Liam pay attention. We discovered by accident that rhythmically squeezing the pads of his fingers gives him enough input that he can sit still and not need to fidget. This accident got us through a 45 minute funeral mass. It also works to squeeze his arms from his wrists to his shoulder and back down again. Deep pressure therapy is used for a variety of disorders and we are finding ways to incorporate it for Liam. We are also looking at other aids like a Move ‘N Sit cushion that will help position him for handwriting activities while also giving him some sensory input.

We have 4 weeks of summer left and the Liam will be starting grade 2. Grade 2 is an important year where kids need to learn to read so that in grade 3 they can read to learn. We are looking into after-school reading programs, and Liam will get extra time with the school’s resource teacher. We don’t know yet who his teacher will be this year, but his Grade 1 teacher has offered to come (she won’t be at the school this year) to meet with his new teacher and us before the year starts so that we can hit grade 2 running.

And the last thing that we are dealing with is an opthamologist appointment in 2 weeks. Liam got a 2nd prescription for his glass a mere 6 months into his previous prescription and his right eye continues to turn in. So we will be going to the local children’s hospital to see a specialist and find out if any next steps have to be taken. ***SHUDDER*** Given my eye issues, I’ll be opting to stay with friends if it ends up that he needs surgery. I’m not as strong as my good friend Heather.

We are forging ahead, finding support and getting the tools in place that we need.  This post has been a long time in coming.  The first was that family needed to be told what was going on.  Could you imagine finding out that your son/grandson/nephew was going through all of this because you read it on a blog at the same time as the rest of the internet?  Yeah, we didn't think that was a good idea either.  The second was that it was hard for me to write.  Even though we've been dealing with all of this for a few months now, it's still new and I'm still a bit raw.  It's hard to think of your baby struggling.  But I've pulled up my big girl panties and I've got my "get 'er done" hat on, so here we go!


Unknown said...

Andi - I just wanted to say that the start of this journey is always scary, and it sounds to me like your son and mine have some of the same issues. :) Just wanted to reassure you that things get so much easier when the supports are in place.

Heather said...

Oh (((((Andy))))) and (((((Hilary)))) and ((((Liam)))) too!!

You know I know where you're coming from on everything from the OT issues to the eye issues (and you know I'm just as squicked out as you are by the eye surgery!). If you need me, you know where to find me!

One hint for the air seat cushion (which my kid has had for years now) - any sporting goods store or even the sporting goods aisle of Walmart or Target will have air cushions you can use for this purpose that are generally MUCH cheaper than the ones you can buy in a therapy specialty shop.

Also, if you haven't already, look into "fidgets" which are actual things Liam can use in lieu of squeezing his fingers for that input. Kiddo's OT started using them with her in the classroom last year and they really helped her stay focused.

Lastly but not least, with the ADHD and sensory issues, you might check into a program called "How Does Your Engine Run?" which is also something my kid's OT started with her this past year. It has proven helpful in getting her to be able to recognize when she's too "revved up" or not revved up enough, and has given us an easy vocabulary to use with her too (like "Kiddo, I think you need to slow your engine down").

I don't regret having the eye surgery for Kiddo and in fact, part of me wishes we'd agreed to it sooner, rather than pursuing all the nonsurgical options first. It definitely improved her vision and we're not seeing nearly the turning in alignment we had been seeing before the surgery. Not that that makes it any easier, I know - it is still NO FUN to go through. (Which reminds me, Kiddo has an eye doc appt next week...)

Hang in there. I know you and Hilary will do everything you can for Liam - you two are great moms!!


Anonymous said...

Andy, I have only known you guys for about a year now, but I have gotten to know all three of you. Hilary and yourself are among the best parents I have ever met, Liam is a lucky boy and Connor and I are lucky to have met you all. I am now pretty seasoned at all of your new words we have been going through some of the same issues as well as different ones since Connor was two years old, but my only advice is to stay consistant and dont give up because it DOES get better, you would never regonize Connor three years ago and I cant possibly put into words how much Connor has grown, matured and learned. He has changed so much he no longer has anxiety and behaviour issues over learning to now being a very good student, he is proud of himself instead of all the behavour problems we were having (with Connor he used to be very agressive), our diagnosis are different but some of the problems are similar, I completly understand how you feel and I value your friendship as well as Connor and Liam's friendship I am always here to help and offer a break if you guys ever need one! xo you guys are doing a great job!! Liam is so fun and a pleasure to have around. Judith

Debi said...

Andy...we are there with you...Spencer was Dx'd ADHD Inattentive with Sluggish cognitive tempo. He too tests out at very high intelligence levels but struggles with short term memory and working memory which makes math really difficult. He reads and comprehends at an 8th grade level. He has many 'low tone' OT issues. Handwriting is atrocious. Anything more than a 3 sentence paragraph he is allowed to type his answers and reports. He has an active 504 Plan and we are making all sorts of adjustments for school now. He was evaluated this late spring and the huge report was so over whelming...I think her report was 16 pages long. Spencer has taken some form of Ritalin since the end of 2nd grade. Most recently we are talking to a pediatric neurologist and Spence is now taking intuniv. It is not a stimulant. We noticed that Spencer was getting angrier and angrier on the stimulants. Also, sleep.Give him melatonin 3 mgs about 1 hour before bed...he will fall asleep like a baby and stay asleep. It is OTC here and it is chemical that your brain already makes. I can send you some if you can not get works great for Spencer. I have a ton of stuff I can send to you should you ever want it. With a background in Special Ed and a child with ADHD etc...I have a good stock of info. We too use a wiggle seat in school mostly for that feedback and support for the low muscle tone.

Fatcat said...

Any chance you could homeschool him? Most of these issues seem so much less severe at home.

SassyCupcakes said...

I feel for you. This has got to be tough and it can't be easy trying to sort through all the info to make the best choices for Liam. So many parents are too scared to even have any assessments done. You really are doing a great job and should be proud that you're facing this head on. Liam will be awesome whatever choices you make, don't forget that.

luna said...

just wanted to send you all some love and support as you work through this and help liam prepare for grade 2. thanks for sharing your story with us!

Andy said...

Thanks everyone! It's so awesome to have such great support!!!