Saturday, August 30, 2008

Occupational Therapy: Day 2

After 2 weeks break, enjoyed his OT, and Steve got to go with us this time. Jake really likes Ms. Cindy, and I personally think that she's a genius. I really enjoy talking to her. I told her what the Dr. Causo said, and how I was greatly confused and surprised by it. We spoke about it at length, and she explained that I should get with Dr. Michaels (her husband) about it and we could discuss what we needed to do, and when. She assured me that none of it was an emergency and expressed concern that we had had a LOT of things happen at one time and it was OK to just sit back and take it all in.

Then I felt like we had a breakthrough. I expressed my feeling that, even though Dr. Causo felt that we should rule out other causes of Jake's issues, my GUT FEELING is that they will find nothing, and that Jake is just an autistic kid who doesn't show ALL of the autistic symptoms. Cindy basically said "you may well be right.. Jake doesn't show all the symptoms because you have always worked with him, somehow noticed his delays and deficiencies and made up for it, with sign language, etc." She then tried to make our heads blow up real big telling us what good parents we are, and that the babywearing, the attachment parenting, and the socialization has made all of the difference with Jake. So maybe his symptoms have been "masked" by good parenting? I hope so. Friday's visit was probably the most positive visit with anybody that we have had so far. Not just because we were rewarded with praise for our parenting choices, but because my gut feelings finally got some validation. Thanks miss Cindy.

Due to a friend's recommendation, I have become interested in RDI as a plan for helping Jake, although I had not had time yet to explore it very much. I asked Cindy if she had heard of it, and it just so happens that she's working to be certified in this method! She says that Jake is a prime example of the type of child who would be helped by this method (for example, a child with very limited body regulation skills) and wants to include him in her certification process. She would be using video of them interact to speak to the experts who are doing her certification, and they would help her fine tune both her skills, and the way that she interacts with Jake. I think that it is a great opportunity for him.

Again, it was a very positive session and for once I am feeling excited and hopeful.

Tuesday, August 26, 2008

Developmental Specialist: What?!

This morning was Jake's appointment at Dr. Causo's office of Neurodevelopmental and Behavioral Pediatrics. Dr Causo was very gentle and nice, and I liked him a lot. That didn't mean it wasn't a nightmare of a visit.

First of all, Jake decided that he wasn't going to cooperate at all. Dr. Causo did all of his own preliminary stuff, height, weight, blood pressure etc, and Jake decided then and there that he didn't want to be there. Initially laying on the floor, and finally breaking down into hysterics by the time the Dr. tried to test his ear drums with a device that was nothing more than gentle ear plugs on a probe. The rest of the examination was done in an exam room and was the most thorough that Jake has ever experienced. It included reflex tests, a blacklight to check for skin abnormal ties, lots of what looked like muscle resistance and joint tests (we didn't talm much over the screaming). The entire time Jake kicked, screamed, cried and scratched. Manny was with me as well, and wanted me to hold him and nurse and was upset by his brother's antics, so the little guy hung onto my leg and tried to climb me while looking into my face in utter confusion and cried in just the most terrible way. This ordeal lasted for an hour or so.

Jake finally came around when we were finished with the physical exam. He played a bit with Dr. Causo with blocks, and was overjoyed when the Dr. got out a set of rubber stamps and put green smiley face and compass stamps all over Jake's arms. Both kids were eventually satisfied with crackers and drinks while we went through the question and answer session, and I filled out the CHAT questionnaire. Then it was time for the Dr. to tell me what he thought.

This is where he says "blah blah blah, high functioning autistic... blah blah's your diagnosis... blah blah blah enjoy your occupational therapy and speech therapy, he'll be fine."

Oh no wait, thats not what he said at all.

What he did say: "I think that Jake has something going on neurologically that is creating autistic like symptoms. All of the tests will show that he is autistic, but I am not comfortable with just that diagnosis. I don't think that he is autistic, he does not act like an autistic child. He does have some of the symptoms, but he just doesn't fit the autistic or PDD-NOS profile."


He went on to say that because Jake has always had and still has very low muscle tone, we're possibly looking at a brain injury/brain damage sort of situation, or possibly a metabolic or genetic disorder. Of course he could be wrong, and Jake is just a kid who, by some coincidence has congenital hypotonia AND autistic like symptoms, but again, he doesn't feel comfortable just letting it go at that.

Not what I was expecting at all. Somewhere in the middle of him telling me this I had the sudden need to move my bowels. After a quick trip to the restroom, we resumed.

I have on my desk a note from Dr. Causo's prescription pad. The first thing it says is "static encepholopathy." Static encephalopathy is "a disease of the brain which doesn't get any better or any worse." From what I can figure out from a quick google search, this is often used to describe children with Cerebral Palsy, FAS or brain injuries. Then the prescription asks for "Brain MRI with and without contrast, EEG, EKG, [something] lab, amino acid and organic acid, chromosome analysis, FISH and autistic panel and fragile X" It also calls for physical therapy and orthotics for his feet. The Dr. feels that his feet turn and need to be corrected.

After that I'm not sure what he said except that he will send this report to Dr. Micheals and that he will be interested to see what the test results show from the school system (I took him a list).

So, from what I can gather, and I may or may not be wrong (because my mind is reeling a bit) is that the worst that can happen is Jake could have a neurological or genetic problem that is degenerative. Then besides that there's the possibility of a metabolic issue where dietary changes are in order, the possibility that Jake has mild Cerebral Palsy or another brain injury that happened in the womb or at birth and nothing will really be changed as far as therapies and treatments go. Or, maybe he's just a kid with autistic tendencies and having the shit scared out of me (literally) right now was just "precautionary". The doctor just felt that we should rule everything out.

Not what I expected at all.

Monday, August 25, 2008

Special Education Evaluation

We went for Jake's arena evaluation for the county school special education department today. He did really awesome, especially considering that we went at 12:30 which is close to when he used to nap (and occasionally still does).

There was a psychologist (who I really liked instantly), a preschool teacher (Kathy, my childhood friend), a speech therapist (Amber, my cousin) and a parent mentor (who I spent the most time with and who I also liked a lot)... As usual I will remember their names later. The mentor took me into the next room while the other three ladies did whatever with Jake. Every now and then we would hear bursts of laughter from the other room. Jake was definitely keeping everyone entertained. Unfortunately, while I was standing up to soothe Manny, Jake saw me through the window and remembered my existance. He broke down and cried and I had to go into the toy room with him for the rest of the time. He was still being pretty funny, although he was getting tired and frustrated.

It was a pretty positive experience. I answered all the questions I've already answered 100 times in different places. Everyone was very nice and said that we've done a great job with him so far. They commented on how peaceful and kind my kids are, and that made me feel good. They will compile the information that they got today along with information that they'll pull from the pediatricians etc and we will be meeting with them on September 26th. Ack, a whole month?

The mentor suggested that I call St. Marks Preschool if I am interested in getting Jake in school. It is an integrated preschool with both special needs and neurotypical children. My good friend's daughter goes there, and I had called them last year, however they didn't have any openings at that time for NT children and I had no "proof" that Jake had ASD. I called and left a message. I would definitely like to see what it is all about. I think that Jake might do better now that he is older. He is learning to follow instructions a TON better and helps me around the house several times per day. Having him in an environment with other children and adults who are professionals at working with special needs kids would take a little of the burden off of us to work with him all day, especially since I feel like I have no idea what I'm doing most of the time. The school year has already started, so I'm not very hopeful that they will have openings. We will see.

In other news: Jake needed a change of style and a more "big boy" haircut. This morning I gave him a fauxhawk! He looks so OLD now. He hates haircuts and usually sits and cries while I use the clippers. He actually did a bit better today and there were periods where he wasn't crying.

While looking at the picture of his new do on the computer, he started touching his spikey gelled up hair. He looked at me and said "porcupine!" Way to use your imagination dude! I swear I had not mentioned the word "porcupine" all morning. That was all him. (by the way, I got a new camera with a good video recorder, so expect more and more videos of Jake!)

Saturday, August 23, 2008

Speech Therapy Day 3

Jake was happy to arrive at Tips today for his third speech therapy visit. He seems to really like Elizabeth, and she has fun with him rolling around on the floor and playing. We only have thirty minutes, and that's too bad. It just seems to short.

Elizabeth said that this week she wants us to work on choices. "Do you want this? or this?" Jake does not respond at ALL to questions, especially choice questions. He also never answers "yes" even if you ask him if he wants his favorite things. He simply reaches and gestures. I have gotten so good at anticipating his needs and reading his cues, that I barely need him to talk to me at all. How frustrating is that? I try to live the Attachment Parenting lifestyle and learn to read my children's' cues, and it almost seems like its backfiring on me? What?!

So, by her example, if Jake wants something to drink, I say "Do you want milk, or juice?" and if he doesn't answer me, I should withhold the drink and try later. I think. I'm not sure if that is right. I'm still a little confused. Besides, Jake would rather starve to death than answer a simple question. Today we bought some of his favorite foods.. his VERY favorite being blueberries. He wanted me to open the fridge and pointed to the top shelf. All of the fruit was up there, so I thought this was a good time for a challenge. Even though I knew he wanted blueberries, I took out the blueberries and an apple, holding both near my face to encourage eye contact. "Blueberries, or apple?" I asked. Jake looked me right in the eyes and then looked at the blueberries. Normally there would be no question. I had to resist and still ask "which one, blueberries, or apple." I felt really silly. HE knows that I knew what he wanted. I asked him "Please use your words, say 'apple' or 'blueberries'" He just reached for the blueberries. I asked him again to use his words. He walked away.

We repeated this episode several times during the day. The blueberries still sit on the top shelf, untouched. Jake would rather go without than to ask for something. I even put his precious stopsign on top of the bunk bed just to see if he'd ask me. After a few minutes,he realized what game we were playing and walked away.

Elizabeth also said that Jake needs to be engaged for about 75 percent of the day. Wow. Jake hates being engaged. After about 5 or 10 minutes of constant engagement, he starts to pinch and pull. After 20 minutes or so he will break down, often crying for hours. Then again some days he wants my undivided attention, ALL DAY, just like other three year olds. I really love those days, though they are few and far between.

Am I up for this challenge? Do I have my doubts? I'd say yes to both questions. I've had quite a few bad moments today though. A nagging voice in my head keeps telling me "You can put yourself through hell, it won't do any good, he's never going to talk to you." This voice sounds similar to the one that told me that something was wrong way back when he was a year old or younger. I don't like that voice. Sometimes it is right. I know I sound negative, but here in this blog is where I tell how I really feel.

Again, I'm feeling like every bit of this is "my project." Steve is so supportive and helpful, yet I'm the one who researches on the Internet for insight on everything. I'm the one left with the responsibility to locate doctors, make appointments and decide which avenues to take. I'm the one who reads the materials and researches the various facilities and public and private programs. Steve works hard to provide benefits and income so that I can pick and choose who sees Jake, and although I'm flattered that he says that he refers to me for most of the parenting decisions and trusts my judgement, that leaves a heavy burden on me. What if I make the wrong decisions? What if something I do is a HUGE mistake?

Meanwhile, do I spend 75% of my day engaging Jake? I'm willing to give up my own endeavors such as the occasional dog grooming and the sewing business, no problem, but engaging Jake can be so exasperating, and often causes me to lose my temper, or causes him to break down and cry.. begging for hugs and cuddles from a mom who is just tired, or who needs pay attention to Manny. And what about Manny. How can I engage Jake for 7.5 out of ten waking hours and remember my other son, a nursing baby who still only sleeps for a couple of hours at a time per night? Its all so confusing.

I have been told up to this point that Jake is "fine" by just about everyone: friends, doctors, my husband, my family. We developed certain routines, certain coping mechanisms, and created an entire lifestyle around coping with how Jake was. We were pretty restricted, and knew that there were certain situations that we just couldn't cope with with Jake en tow. Now that he's being challenged, it is becoming more and more obvious how behind he is in so many ways, and it is just eating me up. Denial was easier. This kinda sucks.

I could probably rant longer, but I should probably figure out how to turn this blog more toward the positive. This blog is devoted to the subject of how I am dealing with Jake and his issues, and sometimes it just has to be this way, I guess. Here is the only place where I can concentrate all the feelings into one place. In my real life this subject is diluted by life. The trips to the grocery store, the laughter, the music, my recent obsession with the Wii Fit and getting in shape despite myself, the fact that Jake, Manny and I all have colds, and nobody is sleeping, the planning of birthday parties and cookouts, playdates, sewing, dinner cooking, kids clothes shopping, watching a baby guy grow up and learn to clap, stand by himself, and talk. So please don't think that just because this blog doesn't sound so cheerful at the moment that I'm living life as a depressed mama walking around in a funk all the time, because I'm not. It just is what it is.

Thursday, August 21, 2008

A Bubble within a Bubble

Yeah yeah.. I deleted my latest post for pure meanness. Sue me.

I suppose I am really on edge trying to figure out what has gone wrong. Jake has lately had so many really great days, and the past two he has been stimming like crazy, carrying around his precious stopsign (that had been lost in the box for what seemed like forever), babbling nonsense and using almost no sensible language, running back and forth with his eyes rolled back in his head, and breaking down several times per day into a screaming heap.

Is this roller coaster just a part of "normal" 3 year old behavior? Is there a trigger in his diet or environment? Is it because I'm being harder on him.. asking him to pick up after himself and giving him lots of directions and jobs? What is up with these HUGE ups and HUGE downs?

Sometimes he seems to have these lows just before he jumps forward in his development, but then sometimes there are lows for no reason that I can understand. Then I read horror stories of children "regressing" and never coming back.

Mostly I feel like I'm the only person in the whole wide world that sees these things and worries about him. It makes me feel like I'm insane. Am I making things worse? Am I making things better? Am I cut out for this job? Trying to get inside his head sometimes takes me back to the time in my childhood when I felt like I was alone in a bubble. Now I'm in my bubble with a little sidekick thats in his own bubble.

And occasionally I catch some sleep in between the worrying.

Monday, August 18, 2008

More progress than we can handle?

Today Patty S. from the school system special education department called. She scheduled an arena evaluation for Jake on Monday. She seems like a super nice lady. The preschool and special ed center are at my old middle school, and I found out that my cousin is the speech therapist, and the preschool teacher is someone who lived on my street growing up. That's kinda cool.

Its kind of nice that all of this is happening at once, because Jake won't be too involved with TIPs should we decide to switch to the free services offered by the school system. We're just going to play it by ear from here. I am worried about the prospect of preschool after our previous nightmare experience, but if Jake would go and enjoy it, I would certainly send him. Otherwise, I may push more towards the homeschool while taking advantage of the programs offered highway.

Since Dr. M and his wife are both on vacation this week, we got a 2 week break from appointments, however next week looks pretty crazy: Monday: Special Ed Evaluation, Tuesday: Dr. Causo for medical evaluation, Friday: OT at 9:30 and Manny sees the doctor at 11:10 then Saturday is speech therapy. I knew it was going to be like this, but its hard not to get overwhelmed, especially with all of the decisions to make. I feel like its 100% up to me to get him everywhere, to decide what measures to take and my decisions are going to effect the rest of his life. It is a lot to think about and I want so badly to be doing the right things.

On a more cheerful note, our family vacation was a stupendous success. If you have tons of time, you can look at one hundred pictures here. Jake played with the other kids, Manny started crawling and cruising, and Mom and Dad really felt like they had nothing to do. It was a great feeling.

Sunday, August 17, 2008

Speech Therapy Day 2

Elizabeth is still getting a feel for Jake, and for us as well, I think. Steve was able to come to the session on Saturday. I'm really glad that he did because sometimes I feel like I'm constantly correcting him because I can't always remember the information that is given to me until I see him doing something contrary to what the therapist says. Its so much easier for him to hear it from the therapist and not secondhand from me.

Jake and Elizabeth painted and played and we just sat back and watched. She gave us some more information and suggested that we think about getting Jake an augmentative communication device. I always think of Stephen Hawking when I think about those things. At first it really frightened me when she mentioned it, because I thought that she meant that Jake may not ever talk. But she seemed to think that it would be something he would rely less and less on. She said the units run from $3000 to $10,000 but insurance will usually cover some. I've been trying to read a little about these online and Steve wants to ask for more information next time.

It is very obvious that Jake is frustrated with his own lack of ability to communicate. Today he was signing and saying "water" to his Dad while Steve was working in the yard. Steve thought that he wanted water, so he told Jake to come upstairs and ask me for some. When I opened the door Jake seemed pretty distraught, but I handed him some water (as Steve had told me that Jake needed water). Jake absolutely fell apart and cried and cried. It was just lucky mommy guesswork that led me to figure out that he had wanted to water the plants outside, and was asking for water to do so with. The heartbreaking part was that he didn't even seem angry that he didn't get what he wanted, but seemed more frustrated and disappointed in himself than anything. He sat in his room and stared at the ceiling and cried and said "water, no no water, water, water water, no no drink water." It really seemed like a blow to his self esteem.

I'm anxious to ask more questions and have more sessions with Elizabeth.

Saturday, August 9, 2008

Speech Therapy Day 1 -- Evaluation

The speech evaluation was a very short session, only 30 minutes long (and I've forgotten the speech therapist's name... sorry, brain full, come back next week). Again it was mostly an interview/observation. I reiterated that Jake's speech development seemed to be on track until he started making sentences, around age 2 and 2.5. She mostly asked me questions, but also asked Jake to point to "the baby that is sleeping" and "to the thing that you ride (tricycle)" on a poster. Pointing to things is one of Jake's least favorite activities. He flat out refused "NO!" before, after much prompting finally jabbed his hand in the general direction of the correct object, then walked away.

The therapist determined that Jake is about one year behind in all things speech: cognition, language, communication, etc. She wants us to come back on Saturdays and 9 AM. The sessions are actually a way of setting up a home program, that is, she will give us things to work on, and we'll do that with him at home.

We are leaving for vacation on Sunday going to Prizer Point in Kentucky. There we'll meet with my best friend and her family. They have 3 girls, one of which is only 4 days in age difference from Jake. Of course I'm nervous about everything, hoping that everybody has a good time and doesn't get too stressed. We have a nice bungalow rented and my family is actually arriving two days before everyone else. Hopefully that will give Jake time to settle in to a routine. I hope that Jake, Steve and Manny get some rest and relaxation.

Tuesday, August 5, 2008

Occupational Therapy: Day 1

Of course I was nervous as always taking Jake to see Miss Cindy at Tips for Children. Jake liked playing with the toys, but wasn't interested in anything Cindy said. He got downright P.O'ed when she tried to get him to do things for her. We talked a bit and mostly had an interview/observation day. I really like Cindy and I think we have a lot in common. I'm not sure if Jake shares my enthusiasm, but I hope that changes over time.

I'd love to say more about today, and I'll try in a minute (rant first please), but I honestly have information overload. It seems like I've filled out the same paperwork 100 times, I've answered a million questions asked by the doctors and professionals, and I've scheduled a half dozen appointments for this month. On top of that everyone (family, Steve) wants to drill me "what did they say?" "did she have a prognosis?" "what does she think of Jake?" "how long will he have to do therapy?" I have even more questionnaires sitting here on my desk. Linda, the office manager at Tips was asking me when I could bring by the prescription (that I forgot) and I suddenly felt like I needed to run out of the room. I told her I had to call her back and promptly left. I really felt at that moment that if I was asked one more question or if I needed to schedule one more thing, even a trip to the bathroom or a diaper change, I was going to explode.

We are planning on going out of town next week for vacation (thank the Universe) and the next week Miss Cindy will be on her own vacation, so Jake's therapy will start the last week in august, a couple of days after he sees the Developmental pediatrician. Cindy said that the diagnosis may be confusing and complicated, but that will be OK, as the therapies are up to the therapist, and I truly think that she is knowledgeable and I trust her to give Jake and I the tools that we need.

She noticed that Jake still seems very low toned and clumsy. I told her about the video on this blog and she asked to see it. She seemed to react with a bit of shock, saying "Oh no, thats not typical at all." only hammering in my own belief that we could have been helping Jake MUCH sooner. Alas... Well, at least 'maybe' some of the therapy will indeed be physical/medical, and that will help with our insurance coverage. Meanwhile we will be paying the $100 per hour fee weekly, or as much as we can and waiting for the insurance company to reimburse us. Going "out of network" has been the best thing we've done, but puts a bit of extra stress into the situation.

I'm sure there's more I could say, only I'm really at a loss today. This was a really hard visit and I wasn't expecting that. I was expecting the beginning of the "miracles" that I've heard others who begin OT and speech therapy talk about. Instead I'm confused, angry, and extremely discouraged. I watched the therapist check "no" on almost everything on her paper, and realized how truly deficient Jake's development is in so many areas. Cindy seems confident, and I truly hope she can work magic with Jake, but Hope seems hard for me to come by today. I have been reading a bit on a message board for adults with aspergers and autism and I'm amazed when these well spoken and intelligent people say that they had these same issues as small children. I really really want to believe them, but days like today I have a hard time doing so. I know that I will never let any person, money issue, or selfishness of my own will ever come between Jake getting what he needs as long as I am alive.. but just what does the future hold for him?

Enough typing through my tears. I think that Mommy needs an attitude adjustment in the form of a nice glass of wine.