Feeling Lost
sandraanddrew
member
I think I'm writing this just to vent honestly.
My son is just over 2 and barely has 25 words. He was assessed by Speech in July and placed on a wait list for a speech group, which starts in 2 weeks. However, the therapist recommended that he be assessed for ASD, something which I had already begun to suspect. At that point he was making very little eye contact, wouldn't ask or indicate that he wanted help with anything and was displaying very ordered play. Within 2-3 weeks of the speech assessment his eye contact improved and became typical for his age and development. He started asking for help and the ordered play all but stopped. By the time he was seen by the developmental pedi, the Dr. felt there was little to no risk of ASD (his words) but still referred him to the Autism Clinic (which we are on the wait list for and probably won't be seen until Jan- Feb.) The Pedi also ordered genetic testing, all which came back negative this week.
At this point, every professional we've seen has said they are unsure of why he is so delayed in speech. DS is at a point where he is getting frustrated trying to communicate. I just feel so lost at this point and am unsure of where to go from here. What makes these feelings worse is that I am an Educational Assistant in a Lifeskills classroom, working with a group of 3 students with ASD. I'm just praying at this point that we see some progress when he starts Speech.
Thanks for letting me vent.
Re: Feeling Lost
Something that early intervention told me in the process is that they deal with many kids with various delays every year. The majority of the kids they see are completely caught up by their third birthday. When he starts speech therapy, you'll likely see little improvement in the first few months, but once they find the therapy that is right for him you likely will see progress. When my child started with EI, he had less than 10 words, made hardly any eye contact, and couldn't sit still for a minute for an activity. A year later he has hundreds of words, speaks in 5+ word sentences, makes eye contact, and will sit still for a craft for 15+ minutes. It did take months of little/no progress in therapy before we started seeing some real changes though. Give the process time and try to be optimistic. If you don't see any improvement after 4+ months of speech therapy, certainly get a referral back to your developmental pediatrician.
If you've been told by a developmental pedi that he's at low risk for autism and genetic testing came back negative, those are all good signs. I know it's so much easier said than done, but try not to think about the worst case scenario. Some kids are just late bloomers when it comes to speech.
If he's getting frustrated by not being able to speak, have you started teaching him sign language? This helped with the frustration tremendously.
Thanks. The reason I'm nervous about Speech is that it's not one on one therapy. He'll be part of early language speech group. And it only lasts for 10 weeks, five of which he doesn't even go. Only DH and I go on odd numbered weeks and he goes on even numbered. So really he'll have 5 individual sessions and that's it. We are on the wait list for individual speech but have been told to be patient because its a 10-12 month wait list.
I hate the way that Ontario's Preschool Speech and Language Program works.
We tried signing with him (as did daycare) for a few months but it seemed to frustrate him even more. When DH, myself, or daycare would say the word and do the sign, to encourage him to use it, he would slap at our hands or say no no no no, cross his arms and start sobbing, or just walk away. At his assessment with Speech, the therapist recommended stopping signing for the time being as it was upsetting him.
I just don't know what to think.
At the age of 2, my second son had zero words. Zero.
Later diagnosed with childhood apraxia of speech and nearly 2 years of speech therapy later, he is on track expressively and well ahead receptively.
I spent a great deal of time worrying about ASD. I had concerns with eye contact, lack of interactive and imaginative play, he would ignore his name being called most of the time. Other things too, but I'd have to look back in my journal to remember the details now.
Most of my concerns resolved by the time he turned 3. I still watch him closely and keep reading and learning what I can about childhood development. But now, looking back, I have to wonder how much of his behaviour was driven by the apraxia. Was he, knowing that he couldn't adequately communicate verbally, choosing activities that would relieve him of that pressure?
I was on these boards quite a bit during that time and remember the kind words of encouragement that others posted. So I'm posting this as a case study of a kid who hits some of those MCHAT red flags, or those gut check moments when you think "what is going on with my kid?" that, with effort, have essentially resolved.
Parenting is no walk in the park.
ETA: I'm in Ontario too. I chose to engage private speech therapy as the wait times for the sponsored speech were excessive. I augmented my private speech (which we did once a week for 1/2 hour at a time) with a public service that included home visits for 45 minutes of basically floor time activities with integrated work on speech. Ask your doctor's office for a referral for programs in your area. There are 2 in my local area, I live in Central Ontario.
We had something similar happen with my son too. He had some sensory issues as well which didn't help the delay. We started OT and saw improvement for a bit but seemed to plateau. I called my service coordinator and expressed my concern that I wanted to add one more session of speech. She offered a speech group that met twice a week. Between the time I made the call expressing my concern to the time the group started (maybe 2 weeks) he had another language explosion. It seems like my son's speech develops like that--he'll improve really quickly, it plateaus for a while, then another explosion occurs. With the second language explosion, it brought him to an age-appropriate level for expressive/receptive language. The only thing he struggles with now is articulation.
While I agree that the speech groups aren't quite as helpful as one on one therapy, I wouldn't discredit them too much. They really have been helpful for both my kids--other children seem to be very motivating for them.
We had a similar reaction when we tried to teach my DD sign language. I would do the sign, try to do the sign for her, but she'd slap my hands, cry and shut down. In the past month it suddenly clicked and she signs all the time now. I wouldn't put pressure on him to sign, but I might use it when I say words without any expectation that he had to do it back. Just add it in your everyday life and he might surprise you.