Autism??? Really? Continued denial would just be so much easier...
Once again, I am absolutely emotionally DRAINED. Parenting an atypical child is not for the weak, to say the least. Today I was given some MORE new information to process, so I'm back at the keyboard to get some of my thoughts written out, in hopes of releasing some of what is rolling around in my crazy-momma head... I just do NOT do well when I stuff things down. I'm not feeling particularly articulate tonight though, so I'm just going to start writing and see what comes out.
Up to the revealing appointment this afternoon, I'd been meaning to come on LJ and make a public entry about how WELL things are going lately. I've been feeling SO much more optimistic and hopeful about things with Rylan. So first I will give the *good* things a bit of attention, because there ARE good things going on with him, and with us. And they ARE worth noting!!
On to the not-so-pleasant stuff. The speech therapist agreed with me that just the fact that Rylan had sat with her in a little office therapy room and participated in a formal assessment for 45 minutes was really quite amazing. However, as we went through the results of her paperwork with Rylan, it is very clear that he is far, far, far behind where he is supposed to be, just as I knew. The difficult part is that his scores indicate that he is "profoundly delayed" in language comprehension, and "moderately delayed" in expression. He is the FIRST PERCENTILE for receptive language. He can say all the sounds expected for his age but has "disorganized expressive language", especially when engaged in an out of context conversation (i.e. when he's telling a story). She said that when the context was known (such as talking about a picture they were looking at) his speech was 90% understandable, but when he was talking about something from his own initiation, only about 10% was intelligible. This is pretty much what I expected. But seeing it on paper and hearing that my son is 'profoundly delayed' is really hard to digest.
The big kicker-- the SLP said that several red flags came up during her assessment with Rylan and when reviewing his file and that she thinks he would benefit from an Autism Spectrum Disorder assessment. FUCK. ASD was the niggling worry I've had and have been researching on and off since he was just over a year old. I can't go into this area too much more right now,as I'm just too wiped and I still need time to process it. I'll probably have lots of time to process it, as the referral typically takes 4 to 6 months to actually get into the program for an assessment.
The SLP came back later and dropped off a partially-filled out form that I will take to my doctor tomorrow to finish and sign. Just for my own reference-- Referral form for the BCAAN (BC Austism Assessment Network). Areas that the speech therapist marked as concerns:
*sigh* I'm so done with this day. Reading what I wrote above, I sound so calm and factual, but in reality I've been ranting and swearing in my head. A little crying thrown in for good measure too. This afternoon, watching my 4 year-old get up from a nap, spin the rotars on his helicopter for over ten minutes, and then go hide to poo in his underwear mere minutes after I asked him if he had to use the toilet---- I did cry then. I think we've been in total denial about the whole ASD possibility...
Up to the revealing appointment this afternoon, I'd been meaning to come on LJ and make a public entry about how WELL things are going lately. I've been feeling SO much more optimistic and hopeful about things with Rylan. So first I will give the *good* things a bit of attention, because there ARE good things going on with him, and with us. And they ARE worth noting!!
- Anemia-- I think we've got a handle on it. After fighting it tooth and nail initially, he eventually gave up the fight and actually adjusted pretty well to taking the new kind of iron supplement. He's been taking it regularly and we've all noticed a change in his appearance and behaviour. He actually cooperated really well with the second blood test he just had to ensure that he's absorbing the iron. I don't have the actual values, but a call from my doctor's receptionist said that the lab results were "good", and to keep taking the extra iron for a few more months. We're really happy to see more colour in his face, less fatigue overall, he's eating MUCH better and has even agreed to try a few new foods these past couple of weeks. He doesn't fade out in the afternoons quite as dramatically. He's also able to concentrate and pay more attention to details than he had been previously. The improved eating and concentration may just be a coincidental leap in development for him, but the timing is right in line with the iron treatment... I'm offering and he's eating a lot more iron rich foods, so I'm pretty confident that we'll be able to keep the anemia at bay from here on. One worry to take off the plate!!!
- Preschool-- This first year ended on a more positive note than it started, for sure. He never loved it, but did seem to get into a groove by the very end and seemed to learn a lot that I think will set the foundation for his future school years. His teacher even wrote me a reply email with a positive tone (for the first time in all of my communications with her). She said, "I am sorry to hear about the set back with the iron supplement. It will get sorted out. I am happy to hear QA will be a resource for you for the next year. Rylan is a happy positive little guy…yes impulsive sometimes and uses his body language rather than his words…but never with intention to be unkind. He did an amazing job with his experiment, lots of words and enthusiasm. In my experience I have seen many boys that struggle in their preschool years and as they begin school but as they approach the age of nine, everything falls into place. Patience is a valuable tool." (She's referring to the science experiment that he had to do in his last week. She's saved him to go last in hopes that he would understand the concept and be able to use his words appropriately-- and he did!)
- Toilet training-- Thank GOODNESS we've had some major progress over the past couple weeks. After he finished preschool I decided that there would be NO MORE pull-ups during the daytime. We had one really unpleasant day and lots of 'accidents' since then, but overall he's going on the toilet most of the day. It is still mostly me getting him/reminding him to go, but he's now (in the past few days) finally showing some self motivation and taking the initiative occasionally. That was the BIG missing piece. At 4 years and and 2 months old, it was beyond time for him to get with the program on this one... I tried to stay positive, but was really starting to resent him on the toileting resistence. I still have to keep myself from being bitchy about the accidents... I think he'll be wearing night-time pull-ups for a while yet, but the daytime progress makes me SO very happy. I was honestly starting to dread the possibility of Ariana being toilet trained before her big brother!
- Language--there has been a noticeable EXPLOSION in his understanding and use of language lately. He's communicating with us SO much better, which seems to have really improved his own satisfaction/happiness factor. We've had several playdates lately and the differences between him and his same-age peers is not as glaringly obvious as it used to be. He can now actually hold conversations with his little friends and they don't look at him quite so confusedly when he goes into the babble. There's a lot less babble and a lot more real words. I was really happy about this language progress, until we got the results today of his speech assessment. But the progress is still really exciting and hopeful!
- Overall fun-- Rylan seems to be able to roll with the flow of things so much better lately. There are WAY fewer tantrums and meltdowns with transitions and disappointments. He has the best imagination. He's just so fun to be around with his huge exuberance and zest for life. He makes me laugh all day long and I truly do love spending my days with him and Ariana (when they aren't being total buggers and I'm not losing my patience with them).
On to the not-so-pleasant stuff. The speech therapist agreed with me that just the fact that Rylan had sat with her in a little office therapy room and participated in a formal assessment for 45 minutes was really quite amazing. However, as we went through the results of her paperwork with Rylan, it is very clear that he is far, far, far behind where he is supposed to be, just as I knew. The difficult part is that his scores indicate that he is "profoundly delayed" in language comprehension, and "moderately delayed" in expression. He is the FIRST PERCENTILE for receptive language. He can say all the sounds expected for his age but has "disorganized expressive language", especially when engaged in an out of context conversation (i.e. when he's telling a story). She said that when the context was known (such as talking about a picture they were looking at) his speech was 90% understandable, but when he was talking about something from his own initiation, only about 10% was intelligible. This is pretty much what I expected. But seeing it on paper and hearing that my son is 'profoundly delayed' is really hard to digest.
The big kicker-- the SLP said that several red flags came up during her assessment with Rylan and when reviewing his file and that she thinks he would benefit from an Autism Spectrum Disorder assessment. FUCK. ASD was the niggling worry I've had and have been researching on and off since he was just over a year old. I can't go into this area too much more right now,as I'm just too wiped and I still need time to process it. I'll probably have lots of time to process it, as the referral typically takes 4 to 6 months to actually get into the program for an assessment.
The SLP came back later and dropped off a partially-filled out form that I will take to my doctor tomorrow to finish and sign. Just for my own reference-- Referral form for the BCAAN (BC Austism Assessment Network). Areas that the speech therapist marked as concerns:
- Difficulty with receptive language such as understanding class discussions or following spoken instructions.
- Difficulty with expressive language (expressing thoughts and feelings) or telling a story so that it can be understood and/or severe difficulties with speech intelligibility
- Impairments in social communication (e.g. language delay not compensated by gestures; cannot sustain conversation;repetitive/odd language)
- Difficulties in acquiring basic concepts functioning at least one year below grade level
- fine motor control/coordination difficulties
- Distractable, overly active, impulsive, needs constant supervision, difficulty remaining seated in classrom, interrupts or intrudes on others, impatient
- Poor cooperative play with peers; difficulty making/keeping friends; diminished sharing with others; reduced social/emotional reciprocity
- Significant delays in dressing, toileting, eating, hygiene, health
*sigh* I'm so done with this day. Reading what I wrote above, I sound so calm and factual, but in reality I've been ranting and swearing in my head. A little crying thrown in for good measure too. This afternoon, watching my 4 year-old get up from a nap, spin the rotars on his helicopter for over ten minutes, and then go hide to poo in his underwear mere minutes after I asked him if he had to use the toilet---- I did cry then. I think we've been in total denial about the whole ASD possibility...