Wednesday, October 15, 2008

Dear are going to go back to school this morning......


I had emailed the principal numerous no response. Finally yesterday I figured I better try calling as maybe their computers or email service was down, which was the case. SO the principal and I talked. I scheduled an IEP meeting for Monday, October 20 at 8:20 a.m. For the next 3 days at school we are going to try implementing these ideas and plans and see how it goes and then review on Monday and make any adjustments....etc. I know these are strictly VERBAL for now as I do not have them in writing yet.....but.....we can see how it goes before meeting if we allow you to try them first so I agreed to that. PLUS if I kept you out from school any longer and did not say you were "sick" the school would be forced to report TRUANCY and that is another ball game I don't want to play....where Juvenile Courts can be notified.....etc.

1. You will be allowed to have fidgets to use at your will at your desk at all times.

2. You will not go out at morning/lunch recess with everyone else but instead be allowed to go to a special classroom and in the back they will set up an area where you can work on sensory activities.

3. Someone will be monitoring you to make sure you make transitions okay and always go where you are to go.

4. For second/last recess in the afternoon your aide or inclusive teacher will take you to the gymnasium where you will be allowed to swing on the special OT swing and have other sensory time.

I think this sounds like a good plan and were issues I wanted to address specifically so when I told you what we had planned you were so excited and even came up hugging me....acting very happy and relieved shouting "Thank you, thank you, thank you!" I hope and pray it does go well. I realize some of this sounds bad....some of it sounds like you are being isolated....but in will be around a smaller group of children and in a much more quiet environment. You need breaks like that during the day and time to do those sensory things.

Meanwhile I have been making phone calls to find out more options and to get more advocates for your needs. Monday the group leader of your after school social skills program will attend your IEP as will your former social work helper. I also contacted a behavioral consultant but NOT to my surprise they were NOT experienced with autism and did not feel they could represent you well but they did refer me to 2 other POSSIBLE resources. I have checked into an online free school that could be an option to do along with homeschooling. I also am finding out about private schools and using the Ohio Autism Scholarship to pay for it.

While talking to your leader of your group social skills group she expressed to me how difficult it was having you in her group when her helper was not there. I soon realized that while she could express how this is indeed very important to have someone with you during your comings and goings and social activities at your upcoming IEP meeting......I also quickly got the impression while she wants to try to keep working with would be easier if you were not in the group. There is no easy way to say it. She made many comments in regards to this without coming right out and saying so...ending with "we will finish this quarter" and go from there but she does not really feel you are probably gaining all that much being in her group and I guess you are a handful sometimes if her helper is not there and the other kids are not getting what they need to get if you are there......etc. This sort of stung but yet I can also understand it I guess. BUT that is what the group is about....providing you with help, guidance, direction. What a crock.

So as usual we end up in the same place as always.....where people want to help....but then once involved they realize the amount of time and energy necessary to invest to make it work......and they just eventually get tired and don't want to do it anymore. This runs true in all aspects of your life. Even when something starts out strong....most just give up and just don't want to deal with it any longer. So where does that leave you I often ask myself? There is a huge lack of qualified individuals around that could offer help for you....and even if they want to.....most once you get the social situations anyway.....soon feel they bit off more than they can chew. What a load of crap I say!

Yes having you spend the night somewhere or with someone to be "social" may be entirely different than someone has ever experienced because your needs are a little different or you require a bit more one-on-one time. You don't get invited to spend the night anywhere. You do not have any friends you do anything it is all family. Even that is limited as I know for a fact some just find it easier if you do not come for a visit. They don't enjoy their visits as much sometimes if you are especially WOUND up. They find the extra needs I guess placed upon them exhausting or the environment just your presence creates unsettling and they don't want to deal with it. I think they are a little afraid of you....what you might need.....what might happen if you don't get it. Your life becomes one of exclusion instead of inclusion. I am sick of it. It ticks me off. I pray you never become aware of it or it may hurt your feelings and cause resentment but in most cases you are in sheer oblivion to these details. That is probably a blessing.


Even now within the school and even at a group recommended by the school to help you LEARN social behaviors......even the group leader really does not want to deal with it anymore......and I know it is because she probably does not know HOW to deal with it. Many times you want to try to fit in and do what everyone else is doing but because you jerk around or make sounds or act like a toddler ....they don't allow you to. At group she told me lately you have seemed to regress to where you sit and pick your nose or stick your fingers in your water cup and drink your water from your fingers and talk about toilets all the time, interrupting her group time. She specifically told me they IGNORE you and what you say. She has told the other kids too not feed into that.

HELLO......that is why I sent you to that group to begin with....and yet once again....just like in kindergarten and elsewhere....the so-called specialists act like they have no clue what to do with you let alone for you. Oh sure they can be helpful in pointing out your needs but they don't know what to do to provide for those needs. That is a reason...a BIG reason why I feel and have always felt homeschooling is ideal for you....because I DO know what you need and can provide it.....and you learn and thrive. BUT there is more in the world than just mommy. I guess GROUP had a DISCUSSION about YOU and AUTISM one night when you were not there to try to let the other kids know WHY you sometimes act like you do or make sounds like you do or do what you do.......I think it may have been helpful......not sure yet.

I am thankful to GOD that he allowed me to have you as a son and handle it....not tire of it......look at you one day and say I have had enough..I am done....can I trade you in for an easier model......I don't want to do this anymore......blah blah blah. I find it odd when I am around seem to do so well. In one-on-one situations you do well. Small groups you usually do pretty well..or so I thought. In the classroom you are doing pretty well. They do not say you disturb the class. AND yet your differences......your quirks....makes so many people around you "uncomfortable." AND I guess it is human nature to move AWAY from anything that makes them uncomfortable.

Well come here............let me give you a big hug. Let me embrace you for all those too afraid to truly get to know you, spend time with you, and experience the treasure you really are.


I love you Noah....always I will.



AND one final thing that sort of ticks me off. If all these so-called "experts" are getting funded and paid a good salary to provide services that are not really being provided to our special needs children.....why can't the parents receive a stipend or salary to do it instead? They are usually the ones most knowledgeable and experienced.....the ones most qualified to know what the needs of their children are and how to provide them. When will it be our turn? When will we get help just so we can stay home and not have to worry about working full time to try to make enough to keep our heads JUST above water level......while at the same time trying to provide all the therapies and homeschooling, etc? If the schools and those in charge cannot or do not really want to provide the goods and we do....why not pay us a salary to do so?

What about people like me who have had to CHARGE crap just to SURVIVE since my divorce just so I could continue to work part-time to provide for Noah and his needs through that transition? .... when one can only work part-time for a period of time......where your level of income is not listed on the poverty level chart? .... So you are forced to CHARGE that difference in income. Does anyone know what charging the equivalent of 1/2 of a salary you are not making for 2 years adds up to? A LOT OF DEBT....which only adds another problem to the already growing list.

And though we have no choice but to weave that nasty web others judge us or look down on us and say "how did you get into that mess again?" or "she must not be able to budget money" or any number of things. And yet WALL STREET and BIG BANKS get BAILED out when us smaller insignificant peons are left like ants scrutinized under a magnifying glass in the sunshine.

yeah....I have a slightly bad attitude about it all. There are not enough hours in the day for us parents to work and also provide every service our children might need and academics....therapies.....etc. OR time to FIGHT to get those services elsewhere. I find it ironic that the more therapies our kids are qualified for.....the more we have to actually FIGHT to get them! Talk about time consuming! And time passes...valuable precious time.......learning time.......progress time........growing time.......

and the debt dollars watered with Miracle Grow surround our heads and bodies like weeds......slowly choking the breath out of us..... I am on a rant.......

BUT I give thanks to God for all we do have.....for all HE has provided just to allow us to make it as far as we have......I am thankful.


Betsy said...

Melinda ~ you put all these words down so eloquently. It is all so true and I can understand completely. It is frustrating and I see the people in our school just tire of thier responsibilities, like you say. I often wonder why they are in their jobs because they don't seem to want to go the extra mile. I do hope today and the days to come are better. I'll be praying for your upcoming meeting. I pray that all those involved in Noah's education will fall in love with him and all the wonderful things about him and have the desire and drive to give him the best education they can. Hugs....Betsy

kristi said...

This post hits so close to home for me. I have gone through this the last 2 years with TC. It is so very difficult. We only want the best for our children...that is all we want. But the teachers (or some of them) that are supposed to help our babies...don't really "get" autism. It is tough.


Old Lady Lincoln said...

Dear Noah and Mommy, I hope this all gets worked out for Noah's best interest and to your satisfaction. It has to be very frustrating. There has to be something out there, I would think. And they certainly don't make it easy to find. Both of you hang in there. Love you both. Grandma/Mom

Christy said...

Reading this I cried for all of your frustrations. I am so happy to see you thank God after all the garbage you have been dealing with, so many others would curse Him. I especially felt the frustration in the section when you talked about how family has a hard time dealing with Noah. For years I was the only person to take my one cousin for overnights and even day trips. She is not autistic but she does have learning disabilities and other quirks. She is now a teenager and I have to admit that I don't do as much with her now partly because she has other things that she is more actively involved but I notice now that I don't have her as much I do have a hard time dealing with her. It saddened me when I really realized this. I only pray that God gives me the type of strength He has given you to deal with the situations that come up in my children's lives. I don't know if you realize how much of an encouragement you are to me a complete stranger and I do not have near the trials and blessings you have experienced. Thank you for sharing this part of your life with those of us who are willing to take the time to read.


Osh said...

I will continue to pray for you and Noah.

I understand your frustrations oh too well. So many people in Evan's life kept telling me what needed to be done, but never stuck around to see it many schools, so many therapists, it goes on and on. I was a single mom up until 3 years ago as well.

I wish I could offer you more than just words...

how about virtual hugs?

Tanya @ TeenAutism said...

Hi Melinda,

I found your blog via Kristi at AutismBlessingsChallenges. I went through what you're going through for so many years - the suspensions, the aide not being available during lunch, when so many problems occurred - and finally, after the second suspension, I said Enough. He's not coming back! I pulled my son out of school, found work I could do from home, and began homeschooling him in February this year. I'm a single parent also, and I understand how difficult it is to make all of this work. I feel for you. I hope that things improve for Noah at school. But if you are thinking about homeschooling, I definitely encourage you to try, if you can. It is so worth all the sacrifices. Take care.

Melinda said...

thanks everyone for the feedback and support. I know we can all relate.

Thank you also for the prayers.

Tanya....I have homeschooled Noah already in the past......I homeschooled him to finish his kindergarten year and then first and second grade. Third grade was the first time he wanted to try public school again so I let him try it. It worked out pretty well.....this year is a little different. Today with the changes it went a lot better.....but we will see over time.

Thanks for the visits and comments!

Melinda said...

oh I also work from home...I changed my job to work from home even before Noah was born as I did not want to put him in daycare and I could not afford it I too work from home now.

Donna Cooper said...

Bless your heart! I've been where you are, and it is so frustrating and draining. I will keep you and Noah in my prayers.
Mom to my AWEsome son, Jonathan

Donna Cooper said...

Bless your heart! I've been where you are, and it is so frustrating and draining. I will keep you and Noah in my prayers.
Mom to my AWEsome son, Jonathan