What Get's Me Through: Part 4 Progress; The Sweet Mysteries of Life

Progress- yes - it is one of the pillars of survival for those of us with kids with special needs. Zach has made progress - in the strangest of ways. It is never quite what we wanted, but appreciated nonetheless.

Sometimes you just cannot see the forest from the trees. I realize after reading and talking with so many other parents that it is imperative to write down where Zach is at from time to time. Thus the blog is helpful in recollecting from how far he has come. I will not lie to you, I want to write to you how he is talking above all else. As much as my heart desires this, I have learned to prioritize other skills as being just as important.

Zach still does not have much in the way of functional language. I have noticed a few of the therapists referring to him as non-verbal, which I realize after being in this as long as I have, is really not accurate. He has no real functional language - he is not conversational nor has he yet to recognize the power of words; the critical reason for verbal communication.

Another critical skill, potty training, is touch and go. Zach is pretty much schedule trained for #1, as I have written before. But #2 still has yet to be conquered. He, if wearing appropriate attire, will pull down his pants and do his business independently and dress himself afterward. He will flush, and if prompted, will wash and dry his hands appropriately. This, along with his aim, has made him heads above half the people I used to work with.

As for motor skills, he is having some success. He is doing better at alternating his feet when going up and down the stairs. He is cutting with scissors fairly well. His coloring needs to be worked on, but he is enjoying doing crafts. He even surprised me with a recent independent track on his scooter. It was only for 7 feet - but I was excited about this nonetheless.

He did something that surprised me last week, while at Babcia Morphet's house: he sat down to play Candyland with Sophie and me. It was crazy how he knew how to pick the card from the pile, look at it, and discard. He had no idea, however, which piece was his and what to do with it. This is a goal I am making for him - for him to know how to play this game with just some minor prompts. It was really cool to see that he was interested in this.

And there are the things I do not understand. Like how he went over to the neighbors house and rang the doorbell for Lord only knows what reason. I was embarrassed as my neighbor came to the door after just stepping out of the shower and all I could say is "I'm not sure why, but Zach wanted to stop by and say 'Hi!' "Sophia surmises that he wanted to swim in their pool as he walked over to our other neighbors house immediately afterward and was looking longingly at their now-closed-for-the-season pool.

Then there is ice cream. Somehow, he managed to get into our freezer and get a pint of his ice cream out and go to town. I am still perplexed how he could reach it - there were no obvious signs of climbing like a chair pulled over to the refrigerator. Motivation can make many unlikely things happen.

And then the other day, out of the blue, we were standing in the kitchen when he grabbed my hand and said "Come". I followed him as he pulled me into the family room where we arrived at a bookcase. He then said "pick me up" and I did as he gestured for something on one of the bookshelves. I looked to see a toy which I grabbed and he responded with a "nnn nnn nnnn". I put the toy back and he reached towards the back of the shelf and grabbed for himself the tin where Buddy's ashes are stored. I have no idea how he knew where this was nor did I have a clue as to why he would be interested in it at first. I showed it to him and told him that it was Buddy's ashes. I put it back on the shelf, and he gestured that he wanted it back. I gave it to him, and he cradled it in his arms. He did this twice more after I told Steve he had to see what was up.

OK - I don't really care if you think I am crazy right now: I know what Zach was telling me, and so did Steve. I said to Steve so what do you think about that? And he responded with a "We are not getting another dog until Zach learns to poop on the potty. We are not having more than one thing poop in this house at a time."

Regression is a hated word in the autism world. Children acquire skills, and are also known to lose those same skills. Hopefully for every few steps forward there is only one small step back. I would never want to go through that initial horrifying regression of Zach's where he lost his point, his eye contact, his words ever again.

I recently met a family whose children were Zach's age when they regressed into autism. I cannot imagine having your hopes dashed so late into the development stage. It was heartbreaking for me to hear about for sure. However, they are moving forward. Mom and Dad are very involved and always seem to have a smile on their faces. You just don't hear them complain. They are very inspiring to me.

So, time marches on and hopefully Zach's skills will too. I am hoping for a Christmas where he gets the concept of the holiday a little more. And maybe the mystery of Zach might be a little more revealed. Holiday miracles anyone?

Christmas Wishlist

Hi all. So Thanksgiving hasn't even rolled around and the Christmas goods have already been on the store shelves for like a month. This marketing ploy has made it's way into the consciousness of some of our friends and family as I have received a few calls about Christmas presents for the kids, Zach in particular.

At our Team Meeting last week, I asked the therapists for some ideas - and boy did I get some. So I have created a wishlist for Zachary on amazon.com of the items the therapists mentioned. Please feel free to link through to the wishlist. On top of the list from therapists were a scooter, some beanbags, and the Puppy Pal Bingo game. But anything would be great!

I by no means am asking for any of my readers to purchase these things for us - this is only some recommendations for those who were planning on getting Zachary a Christmas gift and wanted to make it something purposeful for his therapy.

It might also serve as a list for other parents to peruse for the special needs kids in coming up with some ideas.

Team Meeting

I don't know what to say. I am overwhelmed. And for once it is a "good" overwhelming.

We just had Zach's team here at the house for an hour and a half. All seven of them. And they all seemed interested, too. It was one of the best and most productive meetings I have been to in such a long time - even (especially???) compared to my old work days.

I looked around the table at some point, and, well, I just wanted to ball my eyes out - for joy that is! I know, I am so corny/emotional/sensitive. It's just I have had a hard time with faith lately; faith in a supreme being and faith in people. I realized that this particular team has restored my faith in people - and that helps me to believe that the big guy upstairs might be looking out for us.

One thing I have learned from all of this - when someone else cares for your child, which might be a job, but one that a lot of people don't want to do, you find yourself calling them family and not therapists. I mean, seriously, these people and their efforts are just another form of love, pay or not. And when someone loves your kid, I mean, uughh, there are no words. There is no bigger way of endearing themselves to me than to be nice to my kid.

I feel like we have added so many people to our lives in this capacity - people who I will never be able to find fault with because, quite simply, they did something special for Zach. Many of you know who you are.

Hopefully, soon, I will be able to post pictures of the basement therapy area - another act of love. It's so great to have joy in our house right now.

If you are a therapist and happen to have stumbled upon my blog, please realize that there are a lot of parents out there that appreciate what you do. And there might be some who don't. But what you do is so-o-o important regardless of parental attitude. If you are really trying to do what is best for that child, than I guarantee you are making a difference in that child's life. And if some parent isn't showing you the gratitude - please let me thank you for the child who might not have their own voice to do so right now.

Go TEAM ZACH!!!!!!!

Rest

Longing for soft sheets.
Constant slow motion running.
Will we sleep tonight?

Speech Therapy and Autism in NY

It has recently come to our attention that the New York Regents is attempting to reduce the minimum educational standards for students with autism. We have serious concerns about this issue. We have heard that the NY State Regents are interested in making integrated classrooms bigger and eliminating the minimum speech therapy standards for students with autism. We are also told that these standards are being lowered for fiscal reasons alone.

We find this unacceptable as do many other parents with children on the spectrum. Current educational efforts are already lacking for many of these students. There is no alternative to our public education for children on the spectrum, especially now that the Governor has vetoed the autism insurance reform proposed legislation. We are confused why New York, once a progressive state with very high educational standards, is deciding it no longer wants to be in the forefront of modern educational movements. One of the many reasons that people choose to stay in New York state were the once wonderful public schools and programs for children that they offered.

We are deeply disheartened to hear that the services we already have had to fight for our son, may be further watered down to meet some financial goal.

Time and time again, I revisit in my head: are there better places for services? I read complaints from parents from all over the country. And you also hear from time to time about such and such city that is everything and anything. I have a hard time believing it though. I think someone, or maybe even a few families, get lucky, and then everybody starts moving there, and the voila, the pie gets diced up pretty small and now things aren't so great.

When in Connecticut recently, we asked about services there. Again, we heard much like we have about everywhere else: it depends. There are more laws on the books pertaining to covering autism there. There are great top notch research universities that study autism and I believe end up affecting the culture in the area. But each individual case is just that.

So if you are in NY, and love someone with autism please check out the following website to learn how you can help with the proposed cut to services. An email or phone call to one of the Regents would be greatly appreciated! Time is running out!

Autism Action Alert

Just when you think it's safe to be Catholic

So I have gone through all the sacraments personally, with the exception of nunhood and death. I have learned the major parts of the Bible and the Catechism. I go to Mass. OK OK. Not every week, but I go a lot. OK OK. It depends. I am struggling with the concept of faith again in my life and I have missed a lot of Masses. But I still consider myself Catholic.

So we (Catholics that is) have taken hits because of the way the fools dealt with the pedophiles. Mind you - it is a well known fact that pedophiles join lots of vulnerable groups to get access to children: other churches, the Boy Scouts, clowns, heck even teachers themselves have been infiltrated. It's a bad thing, but don't let that make you believe that Catholics believe it's OK to molest children just because a few idiots tried to cover it up. It just aint so.

I didn't see a lot of US press on this, but thought it interesting:
Muslim suicide attackers massacre Catholics in Baghdad church

OK - so that is a terrible thing and I am certainly not trying to Muslim bash. Lord knows the Crusades don't make the Catholics looks too good. Heck, let's take a look at Yugoslavia and the Serbs for a second... OK Find it curious that the American press did not make much of it. Yet if there was some idiot priest somewhere who grabbed little Johnny's buttocks that would be the headline on tomorrow's paper.

Let's get one thing straight: the Church is not about abusing young children, some stupid people in the Church protected the idiots, but I don't know a single Catholic who joined the group because they didn't get accepted into NAMBLA. This behavior sickens most Catholics. Don't confuse some of the stupid people who do stupid things with the ideals that bring people to the institution.

Yes, it can be really hard to be a Catholic at times.

But after all the penance, the public ridicule, Vatican II, that Italian priest whose sermons went on and on and on, it's going to get a lot harder:

Catholics to learn new wording for Mass

Oh gosh - the one place I could go and mindlessly pass through the ritual while contemplating bigger things, and now I am going to have to pay attention and learn something new. uugghhh