A Family Meeting with CMO, the "Therapist" and the "BA"

Oh boy, oh boy! Tomorrow morning at 10:00 am I have my favorite people coming to have a family team meeting to talk about the lack of help we have been receiving. I look forward to having my daughter join us, she works at a school for special needs adults and hopefully my very vocal sister will also grace us with her presence. It should get rather interesting when the "Therapist" tells us finally what his game plan is to help Timmy. So far he hasn't shared it with anyone, not me, not Timmy and not the "BA" who has a degree in English but has never worked with a child on the Autism spectrum or had any formal guidance or training working with children in general. So this young man is a very nice guy however is he the right person to help Timmy? I don't think so, here we have this nice young man who's heart is in the right place trying to help a child when he has no clue where to even begin.

We have the "Therapist" who isn't helping us and the Behaviral Assistant who isn't helping us coming over to talk about how they are going to help us. Oh and I forgot we have the Family Support Organization person maybe coming too, this is the person who is suppose to be helping provide me with emotional support and guidance through the system, this is the person who calls maybe every 2 months when she remembers us and says "I didn't know Timmy was in the hospital", well lady if you had been doing your job or returned phone calls maybe you would have known. Then when she does call she wants me to give her a 2 hour history on what's been going on, nope not going to do it anymore.

We also have my Child Management Organization Person coming, this is a great young lady who honestly cares about us. She has been supportive and present and keeps trying to get us the help we need. Sad as it is her hands are tied, everything she does has to be approved by "higher" ups and that can add up to a few days to more than a week of delays. I do feel lucky to have her as our worker, I know she cares about Timmy and will always do everything she can to fight for him.

Ok so I have a bit of the glass is half empty going on right now. We are about 8 weeks post hospital now and have basically been on our own. The hospital recommended intensive outpatient therapy for Timmy or 20 Hours of a BA and 5 Hours of a Therapist. The local county agency has granted us 3-4 hours of Therapy and 10 hours of BA. They have contracted this to another agency who is suppose to be doing these services for us. We have yet to even receive that weekly and the 10 BA hours are basically a waste of time. I am training the BA which is a huge mistake since I need help learning how to deal with my special guy, DOH! Oh and as far as intensive outpatient well we have been on a waiting list for the only one in the area for 5 months now, I am told we are still at the top of the list but no openings yet. Yes, I call to the point of where they may put us at the bottom of the list soon!

I don't know, I suppose coming home from the hospital I had unrealistic expectations. I really thought that we would at least get some help and the help would come from people with experience dealing with PDD-NOS in children. Silly Silly me!

I didn't invite the school social worker who is trying to get me to take Timmy out of his current school in the middle of the day to go see more schools that she feels are better for him. Ok let's not forget this child has anxiety issues, I have not looked at the schools myself yet and we have both missed a boatload of school and work with the hospital stays. I even got a nice letter from her stating that it is "normal" to go and see these schools with the child so they can interview us. Ok fine interview us but not until I have seen the place first and I feel there is a chance it may be appropriate for him, then and only then will I pull him out of school to go see another school and start the long process of explaining why he "MAY" be going to another school. Ok, I am digressing and need to get back to the meeting in the morning.


Why can't I be rich like Jenny McCarthy and hire all the help we need to make Timmy as successful as possible? I mean seriously, it's a known fact that the early interventions with Autism have the best outcomes, so why can't we get what we need, where is it? Should we wait until he is a teenager and self medicating because he never was taught the tools he needs? Or how about when he drops out of school or gets violently angry with someone and ends up in jail? Will he get help then or will it be too late?

I really just want to get us the help we should be getting, I don't care if the "Therapist" thinks he is spoiled, but I do care that the BA told Timmy he is a "spoiled brat" and I do care that the "Therapist" call him that also. Timmy has a way of pushing people to places they have never gone before. I get that because he does it to me all the time however it is unacceptable to have his BA or Therapist go there. So tomorrow I will sit with the strong women in my life beside me and demand these people do what they are being paid to do, Help me Help Timmy!

Oh and can someone please come help me fill out all this paperwork so I can get him help from the Department of Disability and Social Security?

A happy moment!

Christmas Eve for a Jewish Girl

Well it's Christmas Eve for the Jewish girl, it's weird because I don't know what to do with myself. My family is busy with their in-law families celebrating Christmas and I am home with my precious sleeping Grandson. He is only part Jewish so I am doing Hanukah Harry and Santa Claus for him. He gets it all! So tonight we watched Santa Claus 3 and put out cookies and milk for Santa and he is actually sleeping in his own bed right now and I am downstairs alone (HUGE for us). So I think I did it right, I put powder on the bottom of my boots and stomped all around the house near the tree (Fake snow) and I drank most of the milk, took a big bite out of the cookies we left for Santa.

So here I sit alone, it's weird lately. I am so tired and down in the dumps, is it the holiday season? I think it's a bunch of things all wrapped up into everything and some days it's just more overwhelming that others. I tend to like Thanksgiving much better than Xmas or Hanukah, maybe because for me the focus is on the positive, all the things I have to be thankful for. Meanwhile Xmas and Hanukah for me mean too much shopping and spending money on things we don't really need and too much time isolated from others. It's weird tomorrow we are driving down to my brothers and I will be there for the day with his family and my sister and her husband but I don't really want to go. I don't want to sit in traffic for 2 hours or more, I don't want to pretend I am happy, I just want to hibernate (as my sister says). Yes I hibernate when I am feeling stressed out.

I guess I am frustrated with everything that is Timmy right now, I have done some research and found that the medication that helps him comes in a melt in your mouth form and that is not suppose to have the weight gain side effects of the pill version. So I call his dr and tell him what's been going on and ask for his suggestions, he doesn't even suggest this version of the medication until I ask him about it and then he says "that's a great idea". Ok so why do I have to be the one to find this option? I mean I pay these people a ton of money to help us and I have to still do all the legwork and research. So the dr calls 3 pharmacies and not one of them have it. He does order it for me and we will be able to get it Friday afternoon. Meanwhile I put him back on the pill version and he is not bouncing off the walls, not manic but OMG he is eating and eating and it's just scary to watch. I know what's healthy but nothing is healthy when you don't stop for 3 hours. He is never full on this med. I think I will just give it to him before bedtime in the evening for now until I get this new version and hope it helps like it did tonight. He is sleeping!! Did I say he is sleeping and it's only 9:30.

Anyway I hope you have a wonderful holiday, whatever one it is you celebrate but for this jewish girl I will be much happier when it is over,,,,

Happy Holidays to all,,,

I just wanted to wish all of you wonderful, strong women out there a Happy Holiday. Your comments, your blogs, your words of wisdom are enriching my life. Thank you all for being who you are and for being around when I need an ear or a pick me up or a shoulder....

The right medication to help my boy,,,

We have been through multiple hospitalizations, medications, doctors, psychologists, neurologists, geneticists, homeopaths and therapists the last few years. During our quest to find something that will help Timmy with his day to day struggle of anxiety, mood swings and hyperactivity I think we have tried every medication known to man, well at least the ones I agreed to try. His last hospitalization one of his medications was changed and due to that change he seemed to be doing way better. The problem is that this particular medication causes the stomach to feel as if it is never full. He actually gained 15 lbs in a 6 week period. There are other issues with this medication, it seems to bring out diabetes and other sugar related issues. Due to these side effects I spoke with the doctor and we decided to try something else that has much fewer side effects. Well all of the sudden I am seeing the aggressive miserable child again. So the dilemma is do I allow the side effects and put him back on the medication that was helping him or do we again go through and try to find something else that does help him? The other issue is I don't think there are many medications left to try. Oh and for you non-medicators, Timmy can't make it without meds, he is miserable, aggressive and bouncing off the walls. I have tried the whole homeopathic route and that didn't work either.

The weekend is over,,,

It sucks to be me right now. I would rather be at work than home with Timmy. He is constantly BORED, in fact if I hear him tell me he "I'm bored" one more time I may commit myself. This weekend he had a Holiday Party for most of the day on Saturday. He was home at 3 pm and it began. It was horrible trying to get him to bed and I spent 2 hours going back and forth with him. He wakes me up at 5 am Sunday and then it starts all over again. We have another holiday party to attend from 9-12. We leave home at 8:30 and are the first ones at the party and the last ones to leave. We get home around 12:15 and it starts again, Mom, "I'm bored". When does Hanukah start? I can't wait 5 hours, I'm bored. I do everything I can to entertain him, we watched a PPV movie, we colored, we played with boxes, we colored more during all of this he is saying "I'm bored" Meanwhile it's nasty out, cold raining, sleeting, just crap weather. Then finally it's 5pm and we can go to Aunt Debie's for Hanukah, we light our little menorah, say our prayers and head over to Aunt Deb's.

We give him his one Hanukah gift for the first night, eat some dinner (thanks sis) and then I head home with him since it's a school night. All the way home he is freaking out over his new MP3 player (which I preloaded with his favorite songs and charged). He is having a total meltdown in the car as I drive home, whining, crying, yelling the whole 1.3 miles home. We get in the house and I try to sit with him and show him how to work the new player. He continues to flip out on me, yelling, whining crying, etc. Finally it's 6:30 and time for nighttime meds. I get him to take them and he continues to whine, yell and cry for the next hour meanwhile telling me "I'm bored" . I am trying to get his lunch ready for school and get uniform ready and fold clothes and clean up the house while I am being yelled at by a 7 year old.

Finally it's bedtime, we are struggling to get him to sleep in his own bed so I lay down with him and try rubbing his back and let him watch TV quietly. He can't sit still, he's hot, he's cold, he can't hear the TV, he needs his stuffed animal, he wants a different blanket, etc etc for the next hour. I finally snap, tell him I am done and get up and walk out of the room. He follows me downstairs telling me he is "bored". I tell him to get in his room and go to sleep or there will be one less gift from Santa and Hanukah Harry who is seeing exactly what he is doing, does he care? Hell no! This continues to go on for the next hour and he finally passes out on the couch. I am so wound up, pissed off and frustrated now that I can't fall asleep!.

So it's midnight, I finally go upstairs and go to bed and left him on the couch. Three am he starts again, screaming at me "You left me alone". I tell him you best get to sleep now and he does finally. I wake up this morning and he is in bed with me. OMG.

I have no space, I have no privacy, I am mentally exhausted by this child. He is mentally abusing me and all of the people that are suppose to be providing us with respite and therapy can't seem to work the hours we have allocated so as usual it's all on me and I am losing my mind.

Uggggggggggh, ok I feel better now, tired but better. I am not looking forward to the next 2 weeks. I look at it as four days each week with him home with me screaming "I'm bored" and me running him around like a freaking lunatic trying to keep him entertained. I really feel like I am too old for this, god help me.

Thursday and a good question

One of my wonderful commentors, Mama Kat said... What exactly IS PDD-NOS? Well I am still learning myself. I found this wonderful blog to help explain it "Understanding Autism"

I can't say that I totally get it yet. For me it's just another diagnosis which means they really don't know what exactly is wrong and this is a best guess again. There is an interesting online test you can do for your child to see if they meet the PDD-NOS criteria, you can find it here .

It's all confusing and frustrating, I have this little innocent grandchild who was exposed to a multitude of drugs inutero, it took the hospital 59 days of PICU to detox all of it out of his system. I don't know if them not allowing him to be held during this process of detox caused it or if it's due to all the drugs he was exposed to while inutero or if it's because it's just how God created him.

Somedays I have a ton of anger towards his parent's, my son and Timmy's birth mom, some days I am just so sad for all of them. Timmy is getting to the age where he is asking more and more about why his parents aren't around and why he doesn't live with his sister and it's getting harder and harder to satisfy him with the easy answers like "Your parents couldn't take care of you and they knew I could so since they love you they had you live with me". Now when I say that standard line to him he says "why couldn't they take care of me? am I bad? don't the love me? why can't I live with my sister when my friends all live with their sisters?

Ok this is too serious today and I need to end it with something else.

Last night I picked Timmy up from his second day of after school care. He tells me "Mom, I met a girl and she is so HOT", so me being me says to him"Timmy, it's not appropriate to call a little girl Hot, you can say she is beautiful or cute" Timmy responds to me with "Mom, how come my penis grows when I like a girl" OMG, he is 7 years old, I almost wrecked the car from this one. So I avoided a direct answer and will defer to one of his uncles for this answer!! Any suggestions on the penis growing answer will be greatly appreciated!!

Wednesday - Another work week 1/2 gone

Well we made it to Wednesday. I have to say I am really concerned about how Timmy is going to do at the new daycare today. He gets out of school early and will be there at 1:15. I have the "therapist" lined up to go and spend 1-1/2 hours with him there to help with the transition. The daycare folks have been wonderful well with the exception of the "nurse". This woman is a real PITA and feels the need to interfere with everything I set up with the daycare owners. The funniest thing was watching her when the owners were around. She turned into this other person who was sweet and kind vs the one who was giving me the inquisition and telling me how I should be doing everything. Anyway I just need to let it go and realize some people are on a power trip and in reality she has no power over me or Timmy or our situation, she is just a speed bump we can drive right over.

Tonight we have the BA coming over. I am hopeful he can get Timmy to start sleeping in his own room. I really feel like I have no time for unwinding. My house is still a wreck although I did manage to place an order for groceries online and had them delivered last night. This morning I even managed to put something in the crock pot for dinner. Let's hope the 10 hour cook time doesn't ruin it! I need one of those crock pots with a delayed start! I leave home at 6:45 am and done get home until around 5:45 pm, oops that's an 11 hour cook time. Maybe my sweet sister can go by the house and turn it off for me around 4pm. Note to self: Call sister!

Ok so I got almost all of my todo's done from Monday but I still have a ton of things left and even more to do now, here we go,,,,,

1. Start wrapping presents - I have to do this but with Timmy attached to me when we are home it's not easy
2. Clean my house - I hate clutter everywhere, I come home and feel anxious because it's a mess and yet I don't have the energy to get the cleaning done, why is that?
3. Call my sister - I really don't want to forget this one, my dinner will be awful after 11 hours in the crock pot.
4. Do Laundry - Timmy gained 15 lbs while on this new medication(I am titrating him off it now) and all of his school uniform pants are really tight. I bought 12H and then 14H and they are still tight. This is a 7 year old child! Hopefully getting this medication out of his system will help! Ok I can go on and on about this subject. He gets home and will do nothing but eat one thing after another. It seems this medication the doctor in the hospital put him on causes the stomach to block the histamines and he never feels full!. I can't wait to get him off this stuff.
5. Schedule a physical for him since the new daycare needs a physical form filled out and the last physical he had was in the hospital. They will not fill out the form for me. I have 2 weeks to get it done but since it's the holidays well who knows when it will happen.
6. Wrap presents, yes again because I don't even know what I bought and if I have to go shopping again well time is about out.

Today my brain is mush with all of this and I can't even think of what I need to do,,,,,, help me!!

Timmy with his sister Emily making pizza, Emily lives in Connecticut with their maternal Aunt and Uncle. We will save that for another day

It's Monday and I need space and sleep

Wow, it's Monday and I somehow made it through another week. I am soooooo freaking tired. My sweet little boy has decided to wake up at 2:30 am every day since Thursday night and about every 15 minutes tells me he wants something else. He wants TV. He wants food, he has to ask me a question, etc etc. It's bad enough he won't sleep in his own room but even the chaise next to my bed is too close! I can't brush my teeth without him watching let alone go to the bathroom without him banging on the door at least 10 times or even walking right in (yes I know lock the door). I am so whooped right now. I notice the less sleep I get the harder he is for me to deal calmly with. So no sleep for me means lots of yelling and frustration for both of us. So it's Monday morning, I am at work and I have a zillion things to do and all I really want to do is sleep!

Ok the list of things to do:

1. Get milk - there has been no milk in the house for 3 days
2. Get Gas - no choice here cuz I will run out of it soon
3. Wrap Presents - well that would be great if I had 5 minutes without him to even start it
4. Get groceries - running out of fridge food and lunch snacks and juice now, ordered online at Peadpod last night but no delivery until Tuesday night
5. Get the forms to the bus company for afterschool drop off
6. Get the forms to the new daycare and pay them
7. Take Timmy for another physical at his new pediatrician for daycare
8. Call "The Therapist" and "the BA" and "the CMO worker" to be at the daycare as much as possible to shadow him when he starts so that I am setting him up to succeed
9. Pray that he doesn't cuss anyone out at the new daycare because he is overwhelmed
10. Call the bus company and find out what day they will start transporting him
11. Start the DDD paperwork
12. Start the SS paperwork again
13. Go to the drugstore and get his new medication since his old one put 15 lbs on him in 6 weeks.
14. Clean my house (It's a mess)
15. Do the laundry
16. Take a shower and get my hair washed, dried and flat ironed.
17. Work all day at work so I keep my job

I know there is more but I am too tired think of them all .

Oh btw the "therapist" was gentler this time and Timmy responded much better to him. Hopefully he will help Timmy and remember he is 7 years old and not the 10-15 year old child he is used to working with.

Wednesday - The "Therapist" returns

So it's early Wednesday morning, I am at work and already dreading the visit from the"Therapist". That in itself says a lot! I have made a commitment to give this person one more chance but honestly if they chemistry is not there with him then they will need to find us someone we can work with. I don't want to have to be stressed every Wednesday because this person is coming over. The big issue is that when I tell my local agency I want a new Therapist we could go for 2-3 weeks without any services in home. It's so frustrating but I need to be positive and hope for the best. I just have a hard time being ok with a man who feels my child should be in a group home and feels he is spoiled and not disabled. Yes every child is spoiled in their own way and yes I am his grandmom so that makes it harder to draw the line but I have spent the last six months working to put boundaries and structure in place for him even though it's really really hard for me. Yes I have the middle child syndrome!

More to come after the visit,, wish us luck this afternoon.

Feeling the need to rant and maybe rave too!

I am really sick and tired hearing about all these wealthy people who have "CURED" their autistic child. I mean seriously, this is not a "curable" disability. Ok so they can afford full time Behavioral Assistants and Nanny's and Therapists and anything else they can buy to help their child. What about the rest of us who struggle every day to figure out how to work full time and get home before our special children get off the bus from school because we can't afford to have full time help. There are no afterschool programs for these special children within 50 miles and I live in a Central NJ, not exactly in the middle of no where.

So am I lucky to live in New Jersey? Here there are certain services that the state will provide to a special needs child here. Do you have any clue what you have to go through to get these services? Then there is the DDD, another agency who is suppose to help our special children, you not only have to fill out a book to start the process of intake but then you have to gather documentation from every doctor, school, test, person your child has every had contact with while at the same time proving they are a real person with birth certificates, passports and social security cards. Yes all this while trying to raise a special needs child alone, work full time and be there when the bus arrives from school with a smile on your face prepared to deal with a child who asks over and over again the same questions?

My Not Otherwise Specified child is enthralled with numbers, time, age, etc. He spends his day counting and trying to figure out how this number relates to that number. Most of the time he already knows the answer to his questions so why does he keep asking them over and over again? Why can't I be a "rich" person who can afford to have the full time help this child needs so he can also be "cured".

IDEELI - Balenciaga Give Away Link

Great Give Aways,,,, woohoo

IDEELI - Balenciaga Give Away Today

Day 15 - A long weekend and a crappy therapist

Wow, Happy Thanksgiving to all. I am thankful for so much but most of all that my little guy is able to be home with me and doing better. Every day is a challenge but with the love and help of my family and friends I am getting through it.


Now on to the crappy "therapist" that showed up at our house on Wednesday. This guy walks in with his coffee in a container and asks me to heat it for him. No problem, heat the coffee and give it to him. We sit down and then in comes Timmy off the bus. He takes one look at this guy and regresses 4 years. He goes into a meltdown for about an hour while this guy tells me this is all because he is spoiled. It has nothing at all to do with him being on the Autism Spectrum and when my little guy finally is calm enough to sit with us one of the first things he says to him is "You're spoiled, aren't you?"

This is a person who is suppose to be there providing therapy to us as a family and helping to give Timmy the tools he needs to deal with his disability. Here is what I learned while the "therapist" was at my home:


1) Timmy is spoiled

2) Timmy doesn't need the amount of therapy the hospital determined he needed after a six week stay.

3) The "therapist" doesn't need to do any therapy with us or provide any help or suggestions on what I can do to make our lives better for the upcoming long weekend

4) The "therapist" has no clue when there will be a behavioral analyst assigned to us because 10 hours to way too many hours and they aren't babysitters. This in spite of the fact that the hospital recommended 20-25 hours a week.

5) The "therapist" will not be back to provide "Therapy" for us until 12/10/2008 which will be for 1-1/2 hours not the 4 hours weekly recommended by the hospital upon Timmy's discharge

6) The "therapist" will be Timmy's best friend in 3 months even though Timmy immediately melted down the minute he saw him in the house and didn't connect with him on any level

7) The "therapist" is more interested in telling me how wonderful he is than offering any type of therapy to us.

8) The "therapist" did not read anything about Timmy's history before he walked in the door.

9) The "therapist" wanted to know why I didn't put him in a group home instead of bringing him home


Ok breathe deep, smile and make the call to make sure this is not the "THERAPIST" we will be dealing with in the future. It's all about being the advocate and not letting the system run us over.

New favorite website Ideeli

To shop or not to shop,,,,,,,,

My favorite sister and I, yes she my only sister too, just had a discussion about Black Friday and if we should go out at 4am Friday morning to shop. Well it wasn't really a tough decision, I mean who can pass up $10.00 free dollars for every $50.00 we spend at Kohl's. They open at 4am so that makes it even more of a no-brainer since it's before everyone else is open, woohoo!!. Last year we even managed to snag shopping carts in Kohl's, ok so I had to follow people to the register and snag them but hey we got them didn't we?

Does anyone know of any more really great shopping deals? Macy's faked me out with their $10.00 for $25.00 deal, I thought it was like Kohl's, if you spent 25 you got 10 to spend later but that wasn't the case, it was just 10 off of one 25.00 item.

Looking at http://www.theblackfriday.com/

Day 11 - A really good day and a really bad night!

So we had a great day!! Major progress at school by asking for a "self time out". School of course didn't give him major bonus points for doing it but when he got home I sure did! My wonderful sister and nephew got him off the bus yesterday so I could actually work a full day at the office. I got to their home to pick him up and he was happy and proud of his day. We got home, I made dinner while he jumped in the shower and cleaned his room all by himself! Dinner was eaten, reward system sheet done, dinner cleaned up, all smooth and happy. Then it's bedtime, he asks to go to bed (he will not sleep in his own room or be upstairs alone) so off we trudge to my bedroom. I was smart enough to put a lounger in my room which is where he has been sleeping. I tuck him in and give him his hugs and kisses and he eventually falls asleep. I get up, take a shower, clean up around the house and then it begins,,,,,,,,,

I hear the THUMP THUMP THUMP upstairs, he starts screaming for me, nothing he is saying is making any sense at all, he can not be consoled. He demands I turn off my television and go to sleep, then he continues to scream at the top of his lungs for the next 15 minutes. I am trying to talk to him, to calm him, to figure out what is wrong. I finally give up, crawl into bed and allow him to just scream for another 15 minutes while I pretend to be sleeping. And then just like it started it stops and he is snoring away. We did this 5 times throughout the night. In the morning he says he doesn't remember any of it,,,,,,, wow I sure do!!

This will be a point of discussion with the Dr tonight at our appointment. It as if we are back to Night Terrors of the 2 year old. Great day, bad night, hey it could be worse, bad day, bad night. Count the blessings of a great day!!

Day 10 - a long weekend and learning to say NO

Well we made it through our first weekend home after 6 weeks in the hospital. We are desperately trying not to regress to our old behaviors (at least I am). It's so much easier to say Yes to everything than it is to say No. Why is that? My persistant child is pushing every 10 seconds to get his own way and I have to stick to my guns and not give in. He seems to be much more stubborn than I am. I am starting to hate the word No, or at least hate the constant of trying to redirect him to another place. He always comes right back to what he wants. It's a learning process for us. I guess he's figured out that if he consistently drives me crazy with something he wants in the past I have given in just to stop the harrassment and now I am not giving in but he hasn't figured that part out yet. I have to untrain the peace keeper in me to just say no. It's not helping in the long run when I say yes even if it is an instant gratification thing for us.

Thought for the day "Just say No and stick to it"

A baby step forward in a world not otherwise specified

My favorite local mental health agency just called. They have found him a Therapist and a Behavioral assistant. They are going to give us 3 hours of a Therapist and 10 hours of a BA. Now this is not even close to the recommended hours on his hospital discharge but hey it sure beats what we have now, nothing! I can hope to keep him from regressing and hopefully if they also recommend him needing more than what they are approved for currently it will happen. I am not sure when this will start but today isn't soon enough in my eyes. Next week is Thanksgiving which means it's me and my boy from Wednesday 1:00 pm until Monday am without help unless they get these services in place by then. I guess now is the time to plan how we are going to get through this time and figure out how to stay busy in a positive way.

I have to say the hardest part for me in all of this is having a set schedule and sticking to it exactly. This is what I am told he must have this but it sure is the most difficult thing for me. I mean it's even down to when we eat, shower, watch TV, play a game, etc etc....

Any ideas would be welcome,, so far we have Turkey Day with Auntie, A day with our friends, swimming at the YMCA

I find myself pouring out words, it's like someone turned on a faucet. It's been so insane for so long and I am trying to find a way to make it sane again. Is that even possible? Am I looking for something that is never going to happen? What is sane anyway? Is that a day that goes by without a major meltdown with myself or my GS? Why is it that when he is going to be gone during waking hours I just want to sleep instead of doing something productive, like the damn laundry I hate putting away?

Oh and Happy Birthday Daddy, I miss you every day.

Day 6 - Home from the Hospital

After reading tons of blogs I thought it might be a good way to document our struggle to find help. I am a single paternal grandparent raising my 7-1/2 yr old grandson who is now diagnosed with PDD-NOS. Where to begin? I could start with the 10 doctors, 10 psychologist, multiple medications and wrong diagnosis for 3 years. I could start with the struggle to find someone who doesn't want to medicate him into a coma. But I think I will just start with where we are today.



Today we woke up in a decent mood, had breakfast and got on the bus to go to school. Ah school, well the township we live in doesn't want him in their school so they have him at an out of district placement 45 minutes from home. He is picked up between 6:30 and 6:45 in the morning each school day. Now that we know his true diagnosis is this the right school for him? I know he is of average intelligence per his psychological testing, I also know he can't read yet. Is this because they aren't teaching him or is this because he is part of the autism spectrum? We had a meeting on Wednesday and I was told he is at the beginning level of 1st grade. That's what they told me last year too. I guess he didn't learn anything last year, of course that was due to his behavioral issues (per the teacher). Let's not forget this is a school for children with behavioral challenges, they are suppose to have in place programs to help deal with his challenges and still educate him. The latest thing out of our meeting Wednesday is they will send home homework for us to do every afternoon and the district will do an education assessment, which they have up to 60 days to complete. So we are in limbo at school, he isn't learning and we have to sit and wait for another assessment. Meanwhile back at the ranch the new school district social worker assigned to my GS calls me on Thursday and says "You have to come in right away and do a social assessment with me about GS" oh and if you don't do it right away it is going to delay the whole assessment process. This person has who has met my GS once is holding his education in her hands and on hold. She is sending his information to schools I do not want him to attend and ignoring my request for him to be mainstreamed. I think I have quoted "Wright's Law" to her 15 times since she became his social worker. Least restrictive environment and she is pushing for a very restrictive hospital school over 1 hour away from our home since she has a high school student who went there.



Meanwhile at home we are trying to implement the Applied Behavioral Analysis program they had at the hospital he was in for 6 weeks. The local agency who is suppose to put a therapist, BA and a mentor in place for us at home has failed to do so yet. The hospital has recommended he get 20-25 hours weekly with a BA, 4 hours with a therapist and 10 hours with a mentor along with respite for me. I have to come in to work early and leave early to try and keep my hours and keep my job. Thank god for my sister who is helping me with him after school 2 days a week right now. There is no after-school program for him available so when he isn't in school I have to be home. I am not a therapist and no matter how hard I try I really need help to make it with him at home. GS will not sleep in his own room, he will not go upstairs and go to bed unless I go with him and every day my housework gets more behind. I am frustrated beyond belief with the broken system. My GS is starting to regress to old behaviors and the local agency is telling me that getting these services in place "take time". Yes more of the old "take time". It's so hard not to get depressed and angry and have feelings of isolation. I have to apply to SSI for him, I have to apply for the DDD for him, these agencies need documentation beyond belief. When do I have time to fill out all of these papers? Maybe I can do it during my drive back and forth to work, or maybe I can do it when he falls asleep at night and I need to get laundry done. Oh and let's talk about the 100 calls I need to make to keep pushing for help for us during the day. Yes there is another agency that is suppose to "Support the family". They have been basically non-existent to us, anything they promise they don't follow through with, they don't come to appointments, they constantly reschedule every time they are suppose to visit us. Then we don't hear a word from them for weeks and they call and say "hey we are here to help, what can we do?" My response is nothing since that's all I can expect from them.



The local county mental health agency wanted to put him in a "group home" just so they wouldn't have to deal with us. This is the same agency who is suppose to advocate to keep a child at home. He is 7 years old, how can it be better for him to be away from his family after being abandoned by his own parents? Oh and let's also not forget New Jersey has the highest rate of autism in the country. I think I could write a book about what's happened to us the last 3 years....