I’ve recently heard about other parents giving their preschool or daycare providers an activity sheet to fill out at the end of the day for the parents. This is a way to share information about your child’s day.  I’m sure this is great for any parent to have, but even better for the parent of a non-verbal child. Henry goes to a playgroup (which is set up like a little preschool) one day a week and it’s made up of four typically developing children and four special needs children.  Henry loves going and is so excited when I go pick him up at the end of the day. He’s running around grunting or pointing to various items and when we get in the car his incoherent babbling continues. I know he is excited and wants to share with me about his day, and it breaks my heart he can’t just come out and tell me. Our ride home turns into a sort of game of charades or a guessing game of what he did that day, what he liked, or what songs they sang etc. I do get tidbits verbally from the teachers before we rush out the door, but these activity sheets seem like a great way to exchange more information. This way I can post it on the fridge, my husband can see it and then I’m reminded throughout the week. It is also a written record if he’s reacting negatively to certain foods, has tremors or sensory issues.

I’ve modified a form to suit my needs and I’ve attached it. Feel free to download and make changes that would work for your child!

I find myself trying to squeeze in a little speech “therapy” with Henry whenever I can.  And in the last six months or so the car has been a favorite place for this because, let’s face it, he’s kind of a captive audience. He’s all strapped in!

Henry has a love of stop signs and traffic lights, so that was an obvious place to start.  So many possibilities for prompting speech while on the go.. stop, go, car, truck, tree, school…whatever. It’s endless right?  (btw, I always wonder what people in other cars think when they see me at stop lights and such. I’m always talking and gesturing to him, pointing out objects or people. He’s hard to see, so I must look like I’m talking to myself!)

Anyhow, the funny thing that got him going was “house”. It started as a game, and I use the word game loosely because it was a lame attempt to distract him and get him to stop crying one day. I pointed out the window to a house and said, look, “house!” in a very excited voice. Then I pointed every time I saw one and did it in funny voices, or in a sing song voice. He found it very entertaining. We did this on one particular long and winding country road that was on our way home from therapy and other errands, and I did it every single time we took that road. He began to anticipate the “game” each time we drove down this road. After a few weeks, I pointed and waited instead of shouting out the answer…he said “ha!”. A couple of weeks later it became “how”.  Lately he’s advanced to “housh”. And this is now without a verbal prompt! As he mastered house, I now add a descriptive and make a two word phrase. “Yellow house”, or “small house”.

I was surprised today when we were taking a walk in the neighborhood and he pointed to a house and yelled ‘gee housh!!” (green house). Now, the house was indeed blue, but that’s neither here nor there. The exciting part was he made a two word phrase approximation, spontaneously!  I was beyond excited. It took over six months, but we got there!  ”House” I think has become a permanent word approximation for him and I don’t see it going away anytime soon. It just made me realize our kiddos are really paying attention all the time, taking it all in.  All of this apparent talking to myself is not a waste of time or energy  after all. Sometimes words come to them in the most unexpected ways…way to go Henry!

Can I take back what I said in my most previous post about our insurance company and the pleasant surprise of coverage? It turns out the information they gave our provider was wrong, and our OT and PT visits count against our total, even if they are on the same day. So his OT  and PT evaluation are taking away from the # of speech visits he has left for the year and I can’t schedule regular PT and OT therapy as originally planned. We just don’t have the money.

Based on the original information BCBS gave us, I restructured his schedule, I didn’t renew gymnastics, and I reduced his services from EI. Now they are saying we had the wrong information. I asked how it could be I get different information every time myself or his provider calls. Their response was, “that must be very frustrating”.  That’s an understatement! If I could fill this page with all kinds of swear words directed at BCBS I would. Just imagine that part. Insert profanity here.

Ok, so I found another product I love, but it’s not a speech product. I found these on sale this week on zulily and thought they were the best idea ever! I had one of those, “Why didn’t I think of that?!” moments.

These are easy pull on socks. There are actually little handles so it’s easy grip. Aren’t they cute? They come in all sizes so they are great for special needs kids and adults…all ages!

Henry has such a hard time getting dressed and undressed, but has shown a recent interest in it. He is in that “me do!” phase, and especially in this area. He can’t say “me do!” but I can hear it loud and clear! So I’ve been wracking my brain on how to help, without actually helping (because he won’t let me) and how to ease his frustration with dressing. He is a little behind on his adaptive skills so this is good for us to work on anyhow. He can’t seem to coordinate pulling the opening of the sock far apart to get his toes in. These appear a little looser in the opening and the handles of course will help.  Genius! You can find them at EZ Sox.

It’s been a full week since our return from Michigan. We all needed some downtime, including Henry.

Some of my prior concerns are coming true. Keeping up what Henry learned at Kaufman is a challenge. Obviously therapy here is very different than with Nancy, and it’s less intense, but the crazy part is Henry seems even less attentive and is producing less sounds in therapy now. He has too much freedom to move around and get distracted in my opinion…he’s two so who could blame him for doing so if given the chance? He’s also less excited about going at all. I can’t really figure it out, he seems to be rebelling and pushing back a bit. Maybe he’s just tired?

Our SLP here is great, and very open minded. I shared the DVDs we received from KCC and she’s in the process of reviewing them. I’m hoping in partnership that some positive changes can be made in the format of his therapy to make him more attentive and focused. It’s funny how once you see something done, your expectation rises to that level going forward, even if it isn’t totally realistic. I don’t expect our SLP here to be Nancy, or to use her techniques 100% because she has a lot of good ideas and experience too.  However, I’m hoping we can pull away the things that worked and implement them. It’s continuing to be an open discussion and I just need to be patient. It’s hard once you hear that little voice, you want to hear it over and over again! I’m not ready to go back to more silence.

At home, if prompted, I can get him to repeat sounds and words and sometimes even the phrases we learned last week. It’s part of scripting and what my husband and I need to be doing often throughout the day. In addition to scripting, I try to turn repeating words into funny games or songs. Otherwise, if it seems too much like “therapy”, Henry catches on and gets frustrated. He doesn’t want mommy to play therapist and I have to be careful not to cross that line. It’s hard because I have seen him gain words and then lose them again…I’m trying to help him retain all that he learned last week. I guess I thought there would be more spontaneous words coming out and a new focus in his therapy sessions and we just aren’t there yet. I have to remind myself that apraxia long road with lots of stops along the way. Patience, Linda, patience :)

I found this idea on pinterest the other night and thought it would be a nice activity for Henry to work on his fine motor skills and hand-eye coordination. I have been collecting arts and crafts supplies lately, getting ready for a winter indoors, so I already had pipe cleaners on hand.

Henry loved this!  We did it after dinner and before bedtime because it’s also a nice quiet activity.  First he just liked to touch the pipe cleaners and loved the fuzzy sensation on his lips. He also just got really into threading them in and out of the holes of the colander. This kept him busy for quite a while. I also used it as a speech opportunity. Henry had to choose the color he wanted by naming it first, and then saying “in” when he put them in the holes.

Once he tired of this we got silly  and made all kinds of fun things with the pipe cleaners…glasses, headbands with kitten ears, and a fuzzy black spider. From a sensory perspective he did great with all of it, he was just leery of the spider. Even though he knew it wasn’t real, he got the eebie jeebies and was a little shakey, but not crying  :)  But hey, no hand tremors during this activity and that’s always nice to see!   I will pull this activity out again on a rainy day .

Music to my ears!  Henry said his first “I love you” to me tonight! We have a routine of reading books before bedtime, followed by a couple of songs with him sitting on my lap facing me. Usually he signs or gestures along with the songs or offers up a sound here and there. Tonight when I started to sing he stopped me and started to sign “I love you” except this time he spoke along with his signs  … “I la ooh”. This is his closest approximation.  He has never put these sounds together in a row before spontaneously. Usually I have to say “I” and he repeats me… “love” and he repeats me..etc. So this was huge for him! Never mind that it is my most favorite thing to hear! I’ve been saying it hundreds of times a day for two and a half years and it’s pretty gratifying to hear it back.

As I’m typing this Henry is in his crib talking to his baby. He seems to be practicing his “b” sounds. I’m hearing something like this : “ba ba, baby, bye ba, bye bye, ba boo, ba ba ba… ” etc. He’s finding his voice for sure. I think he likes hearing it almost as much as I do…

The fourth and last day arrived and I was looking forward to more therapy for Henry, but dreading the end of the day having to say goodbye.  I have this knot in my gut wondering just how are we going to keep this amazing progress going once we leave.  I know I have to be realistic about it and I put way too much pressure on myself, but now that I can see what he’s capable of I really want this growth to continue. I know that a lot of it hangs on what happens at home, so I can’t help but feel this pressure.

But when I sit and really think about it, I learned so much here…I took notes, I’ll have videos to refer to, and great exercises for Henry from the OT. Hopefully his therapists at home will be receptive and willing to bring these techniques into his sessions too.  Everyone has his best interest at heart so I have to remain optimistic that we can do this as a team.

Back to Kaufman…Henry had another great speech session in the morning. He seemed to struggle a little bit as he got pushed a little bit harder, but he tried his best and really did great. We recapped the week with Nancy and discussed coming back for a follow up next year… we are thinking in the spring sometime. She suggested signing up for the summer SPEAK camp because it fills up so quickly, so we did that as well. I don’t know how realistic that is financially, but I hear such great things about it I would really like to try to make it happen.

We followed up with our last visit with Amy for OT. She had a stack of print outs outlining exercises to do at home to help his vestibular and proprioceptive systems and I peppered her with last minute questions. She’s so great! Finally, she did the spinning exercise with Henry again and said his eyes made movements later than they should and that he was having a delayed reaction.  She thought it was possible that’s why he has tremors after these kinds of activities start ten-sixty moments afterwards. It’s something to consider. She again suggested that we do some deep pressure and proprioceptive activity afterwards to see if it reduces the tremors. We will try this at home.

All in all another great day. We are sad to go and wish we could wrap up all of these wonderful people and take them home with us. I guess we will just have to look forward to our next visit!