Therapeutic Listening

Nate's occupational therapist has suggested we try Therapuetic Listening. http://www.vitallinks.net/index.shtml ...so we are gonna give it a whirl. It really is just indtrumental music while he is playing and it does seem to help his concentration. It was funny- our therapist said, "Now don't worry- I know I promised you I wouldn't bring over any heebie-jeebie tools and methods for Nate.". LOL...I told her she can hit him from whatever angle she wants as long as she doesn't feed him or inject him with anything!! We are open to trying almost anything if it can help our guy learn new skills.
Nate has been doing great this week with his puzzles and piggy bank. These are both great for gaining fine motor skills. He also has been stacking things (a skill he lost or refused to do) and playing 2-3 steps games.
We finally have a concrete date for our DAN! doctor visit (instead of just phone consults). July 30th is the date. I can't wait to get him tested for ALL KINDS of things and find out what poisons are in his little body. I am prepared to be shocked as I feel really strongly about this.
He is off to speech therapy today- if we can make it there with all the snow!

EEG is clear

Well, it has been a busy week. Neve's doc appt went well and the ped is completely on board with my alternative schedule. Score one for the little guy.
Nate's EEG results came back normal- we are thrilled to hear that. Seizures are not something I am ready to think about. I wasn't too worried in the first place since his sleeping patterns are beyond normal and he is always well rested- but hell, what do I know.
Nate did great with therapy this week, and Little Gym too.
We got word that the move to WI is a no-go. I am already house hunting here in Columbus to find a better fit location wise for our family.

Ready to Rumble....

Nate had a great weekend. He had Little Gym on Saturday and it was the FIRST class where he didn't cry AT ALL- zero breakdowns!!! WOo-hoo!! I was so proud of him. He was happy and running around like a madman. I also have "figured out" that another little boy in his class is on the spectrum. I am slowly starting to talk to his mom as I am pretty sure she thinks I am a stalker as it is..lol....but I know her son is attending the school I am considering for Nateman so she would be such a valuable resource.
Nate also started making a new consonant sound- the "guh" sound. We are hoping it might be the start of "GO" which we say all the time and try to prompt him with. We shall see......
So tomorrow is Neve's 2 month appointment and I have my "presentation" ready. I am creating a (guided) alternative vaccination schedule. Let me say I am NOT anti-vaccinations. I am not saying that vaccinations cause Autism anymore than Cheetos do....I really doubt we will know in my lifetime, but it does just make SENSE that overloading their little bodies all at once with all that crap can't be good. Especially when we have a history now of Autism in the family as well as MS. I am expecting a fight though. I do not know our pediatrician's stand is on this matter. Tomorrow will be the big discussion. My girlfriend suggested something to her ped and the ped walked out of the room refusing to discuss it further. I would have found another pediatrician IMMEDIATELY- and that's probably what I will do if my current ped tries to dictate what I MUST do for my child. SO.....I am bringing a proposal, if you will, of what I have planned....but I am also gonna throw a pair of boxing gloves in the diaper bag just in case. I dare ya, Doc.

PECS, PECS, PECS

Nate had a great day at Speech Therapy. We are really gonna buckle down on his PECS book..I am posting a pic of what it looks like. We will add pics all the time as he picks them up and eventually he wil use the sentence strip. We are hoping for the best since he picked up the overall idea of it pretty easy the last few months.

The journey is so painful, I hope to never reach the destination....

A
I have to say the first emotion I felt was Anger, I was angry that this had happened to me,I had been so careful,I made an appointment with my doctor, when I was barely a month along, I took good care of myself, I ate well,and didn't abuse my body with drugs or alchohol, or smoking.I felt such rage at first, this was not fair,some women neglected themselves, and didnt care for the child inside,and their child was perfect. Why not mine?
U
Unbelief..... denial...........you name it, I felt it. This was not happening to me, I would wake up in the night, and it would hit me, my child has autism, and then I would plug my ears, trying to stop the voices in my head, I would bury my head in the pillow, refusing to believe this was happening to us. It took me a long time to let it sinkin, and to this day, I sometimes forget, and then the realization hits me, and it knocks me to my knees again. It takes all my strength to getup. But I do, because I have to, I have to be there for my child.
T
Of course the tears, tears of rage, panic, frustration. Gut wrenching tears in the middle of the night, somehow it always seems worse in the night. The house is quiet at last, and there is time to think, to ponder, to pray. Tears though are such a relief, without their outlet, Iwould have gone crazy. But, I have held them back so many times, in a store when someone makes a cruel remark, or a child who approaches mine, then backs off with that 'look' on his face.I refuse to cry then, because I still have my pride, and it although it is tattered, I cling to it like a security blanket.
I
Isolation, oh yes, the isolation. Friends seemed to disapear into thin air, when they found out.Sometimes I wanted to scream "It's not catching, " but they wouldnt hear me, they were too busy planning playdates with other children who weren't as hard to handle as mine. The phone stopped ringing too, and people would turn away at the grocery store, avert their eyes when my child had a tantrum. The isolation is the hardest thing.......... being alone hurts. At the time in my life when I needed friends and family the most, the pain of them looking the other way, was indescribable. But I have found friends, people who know the path I take, for it is their journey too. For this blessing I am so grateful. These are the true friends, the ones who are there for me, when life is unbearable.
S
Sadness and Solace, I have felt the sadness of knowing my child will not be like other children, I have wept many tears for him. I have spent my waking hours, and sleepless nights worrying about his future, who will care for him, what kind of adult will he be? Will someone be there for him, when I am gone? I can honestly say there is not one person who would give it all up for my baby. There is such pain in not knowing, there is nothing so hard for a parent, than realizing that one day, you will not be there to take care of your child. And knowing that this child will always need your care. But there is Solace too, and I have felt this peace,I have learned to accept this Autism, I cannot erase it,nor will I embrace it. But I have come to a feeling of peace, and I go on because there is no other way.
M
Mercy and Magic, Have mercy on me, It's so hard to raise a child when others look on, and instead of holding out a hand to help, they stand in judgement. Don't judge me, when my child acts out, when he screams because something has changed in his environment, he doesnt do it purposefully, he is only reacting to his feelings. I am a good mother, I love my child like you love yours, I want the best for him, yet I cannot give in to him. He looks to me and I must teach him,just as you teach your child. I may do it differently, because my child is different. He learns in his own way,and I have to teach him in a way that to others may seem odd, or unusual.Magic? Oh yes, there is magic. I have seen my child blossom, I have seen him learn, I have watched his wonder, and rejoiced in his smallsteps. His smile is magic, and his heart is gold. His eyes are the window to his soul and it is the purest thing I have ever seen. I did not choose this journey, but somehow it is mine, and I must see the roses, as I walk upon the rocky pathway. I did not ask for this, but it was given to me, and I must be strong enough to bear it. If I cannot,then I am lost, if I give up, who will take my place?There is enough joy, if I look for it....... it will find me. It must.

Some "good days"....

The past two days have been good. I had a playgroup here yesterday for Nate and he actually did really well. Usually I end up turning on The Backyardigans in the background just to get Nate to focus and want to stay in the room- but I didn't have to turn anything on at all. He did really well. He did steal a few sippy cups- one of which had milk in it, and I was too slow to grab it before he drank some. It is hard because everyone in his playgroup is GREAT about Nate and we really don't have nuts at ANY of the group functions for that reason...but with this new diet it's not like I can ask everyone to only bring Nate-approved food and drinks- it is just not possible. I do my best to watch him but in the end- if he has a little dairy or whatever, it's not the end of the world..compared to what peanuts do to him.

He is still interacting with us really well and his eye contact is great. Poor Glenn is complaining though since Nate is now "playing" with him all the time. I think there have been a few tail pulls involved. :)

Blood test results were normal.

We got the results back from Nate's blood tests that were ordered by the neurologist. They were looking for Fragile X, Chromosomal abnormalities, serum amino acids, and a whole laundry list of others. I guess these have been present in many children with Autism - but not in Nateman. That means we won't be testing Neve, since it isn't present in Nate and we won't be choosing a treatment method surrounding these results. It just rules it out and we are back to the drawing board.
Nate did great with his therapies on Thurs and Fri. He is really relating to Jasmine (OT) and Melanie(ST) well. He is engaging in activities and initiating play. These are GREAT steps.
Nate has also been getting the full dosages of DMG and Super Nu Thera this weekend - I know I will sound crazy but I swear he is "talking" a ton more. Maybe it is wishful thinking. We will see. LOTS of families swear by these supplements- so I will just keep a "sippy cup is half full" mentality.
Little Gym was way overwhelming for the little guy this weekend (Aaron took him)- but we will keep trying.
Oh- and Nate is paying so much more attention to the cat. He has tried to "pet" him a few times too....all good things....

Has anyone seen my money tree?

I toured a school called Haugland Learning Center last night. I basically sat in the car after I left and cried for Nate. It was a school aged/preschool center through 22 yrs old. It even helps them with job placement. It was just too much for me. I am not ready to look that far ahead. I can't imagine my seet little guy learning to do laundry and other things in a center like that. I suppose I am in denial but it was excrutiatingly hard to be there and see his future. I felt like SCROOGE watching it all from a bubble and realizing how much harder I have to work to get him to a good place so that we don't have to go down such extreme roads.
This morning I toured Oakstone Academy. It is a preschool center for kids 2 1/2 to age 6. It was very nice. I could send Nate there. It is so complicated though because we need to coordinate a prechool program with a home based 1 on 1 ABA program. Oakstone has 50/50 typical kids to Autistic kids. We will have to see if Nate even qualifies. He has such an extreme level of need that he may be disruptive at a level that isn't able to be handled. Most of this stems from his lack of ability to communicate verbally. We will continue with the PECS and hope we can make leaps and bounds there. The school is skilled in PECS and will work with him although only a SMALL handful of their students are non-verbal like Nate. This will be an uphill battle.
Did I mention the tuition for these badboys? We qualify for the Autism Scholarship in Ohio which pays for 20 grand a year.....well Oakstone Tuition is about 30 grand a year (and that is just the HALF DAY program)- plus we will have a home based ABA program or some sort of supplemental OT/ST program which will run about another 30 grand a year. At this point, that part is out of pocket entirely. Nate may be eligible for Medicaid- but it is doubtful it will pay for much- and won't come through before he turns three anyways. It will pay for things such as transortation to and from school and things likethat- but if you know me at all you know I would never put my kids on a bus- ESPECIALLY Nate. I will personally make sure my baby is dropped off at school and that he is set up for success. Every day. It is my job. Aaron and I know I will never go back to work. Nate is now my job....and I can't imagine a better boss. (I just wish the pay was a little better ;).
So if anyone sees my money tree, let me know. I am gonna need it. How do young families on one income pay for this type of thing? Nobody prepares for it- so what do you do? Sacrifice therapies for your child?? Not a chance.

EEG Day

Nate had his EEG today at downtown Children's Hospital. It is so hard because we have no one to watch Neve so that we could both go with Nate. Aaron took him because he could restrain him easier. It killed me not being able to go hold his hand. They had to strap him down and papoose him while gluing wires to his head and body. Aaron said he was a trooper. They got the data they needed so we don't have to go back and try again- thank god. It will probably take forever to get the results back from the neurologist. We are also waiting on the results from chromosomal abnormalities blood testing Nate had done a few weeks back. I swear that's all we do...wait, wait, wait.

Nate was a cutie pie tonight- even after his rough day. He knows how to take all his clothes off for bathtime with little assistance and he now throws his clothes in the hamper. Great Job Little Dude!

Fri was our part-two of standardized testing for Nate at the Autism Center. This will basically give us a formal diagnosis (on paper)from a Clinical Child Psychologist and "rate" him, formally, on what levels he is currently at so we can set goals on where we CAN HOPE to go. Our private therapists have rated him at a 7 mo old level for Speech and Language, a 10 mo old level for Communication & Social Skills, and he is age-appropriate for Physical skills. We have a long way to go.
Nate fought the testing 90% of the time (which was expected), so who knows the accuracy of the data- although they do base it off questions from Aaron and myself about his skills demonstrated at home also.
I have learned so much about Autism Spectrum disorders, my head just might actually spin off. Kids in Nate's "level" of Autism sometimes remain non-verbal their whole lives (40% of the time), or he could start talking tomorrow, or he might start when he is 8 yrs old. Anything goes with this disorder. ON the positive side, I guess that always gives us HOPE that he might just bust out with words one of these days.
Nate also had his second Little Gym class yesterday. It didn't go so well. He was clearly overwhelmed by the number of kids and parents in the room and had a 20 minute breakdown. It is so hard watching everyone stare at my "disruptive" child and wonder what the hell is wrong with him and why I am not doing anything more than holding him and applying pressure to his body to ground him. I hate feeling like I always have to explain Nate. Lord knows I could care less about what people think of me, but I hate them staring at my child and judging him. One grandmother who was there with her grandson goes, "He is quite the angry child, isn't he?". What the hell does that mean??!! ..and of course I just said" actually he's a great kid" and I carried Nate to the other side of the gym. I loathe stupid people who feel the need to chime in. Hopefully next week will be better. I am not holding my breath. Maybe Aaron can go next week. I might lose it and take down some soccer mom in the Little Gym parking lot.