Big Ho!

Christmas was extra special for us this year because Henry was light years way from where he was last year in terms of understanding the holiday and being able to express his excitement. His sensory issues have also improved and that made the holiday much less stressful. He was excited about everything…from the lights to the trees, to the music, the books and the parties. And of course, Santa!

Last year, one of Henry’s very few approximations was ho, ho, ho. (otherwise we had mama & dada (as repetitive babbling) and ha, for hot). I remember being really excited about it and then it disappeared. This year we could get a ho, but for some reason, not a “ho, ho, ho”. By the end of the season after working hard on it, we could get “ho, ho”.  Apraxia is such a strange thing. Anyhow, what was funny is that in Henry’s mind everything about Christmas was “ho”. Santa was ho, Christmas was ho…etc.  Christmas trees were “ho tee”,  seeing santa or sitting on his knee was “ho knee”…and now comes the really funny part.

Henry got a book last year about Santa eating too many cookies and sweets at each house he visited… so much so that his buttons popped off of his jacket and he couldn’t make it back up the chimney. This was one of Henry’s favorite Christmas stories and we read it again and again. After a week or two, Santa went from being “ho” to being “big ho”. Then if someone or something was big or oversized, it was a “big ho”. Now I get what he was saying and I think it’s rather cute, but imagine what strangers are thinking when he points to someone, Santa or otherwise, and shouts “Big Ho!”. (this happened). It’s just one of those things I will never forget.

Apraxic kids use approximations all the time, and sometimes they come up with some pretty funny ones. This is my favorite so far!

I hope you all had a happy holiday!

Community

Aside from necessity for work, I was probably the last of my friends to really get caught up in the internet, social media and all it has to offer. Much to the chagrin of my very tech-y husband, I still don’t have a Gmail account. I would set up a facebook profile and then after a short time cancel it out of annoyance and frustration at the whole concept. I did this at least three or four times. I tried to resist it,  but finally caved in order to keep in touch with my nieces who barely even talk on the phone anymore. Now it’s, “just facebook me”. It is also the main way I share photos and updates with family and friends these days.

I’ve been struggling with how technology is taking over our lives, especially when it comes to communication. I worry that ten years down the line no one will be really talking to each other and we will all be living in our own little lonely online bubbles. I worry what it will mean for Henry. I worry email will completely replace the handwritten letters and cards I love so much, or that Henry will lose his love of books because they become obsolete.  So, sometimes I’m on my soapbox about these topics, and like I said, I’ve tried to fight it…but it’s a losing battle.  Now I am online probably more than any of my friends. This blog is my case in point.

What I’ve learned over the last year is the amazing power of the internet. Before Henry’s diagnosis, I was never one to be on discussion boards or join groups. I didn’t really have a place in that world. I was still learning about blogging too and was naive about it’s power in connecting people. It states the obvious when I say that the web brings the world together and makes it a much smaller place.

I may be giving my age away here, but back when I was in school (man I sound old) we didn’t have access to computers or internet. We went the library and we checked out books, looked up things in encyclopedias, and we looked at newspaper articles on microfiche (remember microfiche??). My point is that information came slowly. Information travels so quickly now, in seconds! You don’t have to be an expert in the field and have your book published to share your story. You don’t have to blindly trust your doctors. You can find alternative therapies and read what has worked for other parents. This is an incredibly powerful tool, one that I’m sure some doctors don’t appreciate most days. I, for one, am extremely grateful.

It’s essentially what led me to understand what apraxia is, what I have to do, how to get it diagnosed and treated. I found apraxia-kids.org and ASHA amongst others. It helped me find Nancy Kaufman, her seminar, and eventually her clinic where I believe Henry’s first breakthrough was made. It opened me up to families all over the world going through the same thing with their child, which was a tremendous source of comfort, never mind information!  I found women who I could relate to, who understood my anxiety and fear and hopes for Henry in a way no one else could…and they in turn supported me like we had known each other for years. I have never actually met these women in person. And much of this was due in part to Facebook. Facebook. Who knew?  There are stories like this everywhere now. I guess it’s all in how you use this powerful thing called the internet. We will never go back to the way it was, I know that much. For those of you on this journey, or one that’s similar, take a moment picture it without the internet. Crazy right? I really don’t know where I would be… or rather Henry. It scares me to think about it.

I am in awe of  the apraxia community I have found online, through apraxia-kids and Facebook in particular. I may have become a little cynical in my old age, because I am still surprised at how people reach out to one another, selflessly and with warmth and generosity. Everyone is busy these days, especially parents of children with special needs. When someone takes the time to answer a question or share in one of those little victories that only those with kids with apraxia can understand, I’m thankful and elated. To all of those people and also to everyone that checks in on Henry’s progress and reads this blog and/or leaves comments…thank you. Truly. It’s amazing isn’t it? How we have all found each other traveling down a similar road.

I still love books and libraries, #2 pencils and nice stationary… I prefer phone calls to text messaging and greeting cards over e-cards, but I give up…I surrender! The internet has won me over and is one of my biggest allies in fighting apraxia, so thanks triple “w”!

Transition meeting

So we had our transition meeting with Birth23 and the school that Henry will potentially attend. I misunderstood this meeting in that I thought it was an IEP meeting, but I guess that comes next.

I was really braced for the worst, and I was really nervous for some reason. I wish I could go back in time and tell myself to chill out and not worry so much.  It ended up being kind of a breeze, and nervous nelly over here thus became suspicious it was too good to be true.

I walked out of that meeting feeling like we were going to get everything they had to offer Henry… the max of 4 days in morning preschool, private speech therapy every day, private OT possibly once a week, group OT, Speech and PT daily. I expected to have to battle them in response to comments like, “Well we just don’t really have that in the budget” or “Maybe we can give him 10 minutes group therapy once a month”…something horrific like that. I have heard horror stories about these things…I didn’t just come up with this all on my own :)

Basically the meeting was a round table discussion between myself, Henry’s dad, his three EI therapists, the preschool teacher, and school SLP, OT and PT. Henry wandered around the classroom and played, and I think he also charmed everyone there!

Henry had some of  his tremors during our visit and the OT happened to catch them. They are very interested to hear what a neurologist has to say about it and believe me, we are too! I wish we could get him in sooner to see one, it feels like we have been waiting forever! Yale and Hasbro are currently like Fort Knox.

I came prepared with copies of his prior evaluations and reports.  The SLP seemed particularly interested in the one from Kaufman.  I was pleasantly surprised at what the school had to offer. It felt more like a private school than a public school. I was also surprised at their awareness of apraxia and sensory processing disorder. I guess I shouldn’t have been, they work with special needs children all the time. All I had to go off of was the confused expressions I got from friends and family when I tried to explain it all to them. No one I know, myself included, had ever heard of apraxia. It’s not exactly common so I was relieved that they have had a few apraxic students in the past. It impressed me that they planned on coming to his playgroup to observe him and also would attend a few of his private speech therapy sessions. They also assured me there is great communication between all of the team members and that they would be working on the same goals at the same time, private speech therapy included. It sounds like the program is extremely well planned and would be a great fit for Henry.

I believe we meet again in March to finalize the details and at that point I will find out exactly what services Henry will qualify for. I hope the outcome is as positive as it felt that day!