Sometimes I bend, but I will not break.

There are times when the weight of the responsibility of raising Noah to be a decent, independent adult that is able to function in society threatens to break me.

I don't think I'm supposed to admit that though. 

As the parent of a child with special needs I should be worthy of hearing "I don't know how you do it," "I couldn't do what you do," and "he is so lucky to have you."

When I complain, and admit to not being perfect, to struggling, to god forbid needing help, it makes people uncomfortable. I rather think they prefer when I write about vibrators over sharing with the world that my son has a mental illness and it really, really sucks.

You know what? I get it!

The truth is, I lose track of that line between sharing and complaining quite often. Too often.

Yesterday, I found out that Noah will not be able to attend the special needs summer day camp he has attended for the last three years. They changed the age range of their program and somehow we missed the letter telling us that. It wasn't until earlier this week when I started to think that I have usually sent in his camp application by now that I thought to question why we had yet to hear from them.

Just as I finished a conference call with my team at work, I received the email telling me he wouldn't be able to attend this summer. 

It is without exaggeration that I say I came close to breaking. I bent, and I bent far. I thought I was going to snap. Like the snow and ice laden trees behind our house did in the storm the night before.

What are we going to do? Where will he go this summer? I will have to quit my job. I can't do that. How will we survive? What will I dooooo???

I cried. I sobbed. I took to my bed and wallowed in my tears.

Oh, the drama!

We are in the midst of snow and ice-storm school closings. Yesterday, we spent part of the day without power. My children forgot how to play with REAL toys, because Oh the injustice, there was no TV or cable or internet or Xbox. And LIFE IS SO HARD YOU GUYS! This house sucks! You obviously don't love us because we are SOOOOO bored! It's not fairrrrr! You are the worst parents ever!

I looked at them through my puffy, tear filled eyes, and said YUP. And then I cried some more.

Because I too was feeling that LIFE IS SO HARD. And IT'S NOT FAIR!

I was tired. Tired of the fight. Fighting to have a family, fighting to bring Noah home, fighting my body to get pregnant with Kiel, fighting to find Noah the help he needs, fighting the school, the system, the insurance companies, fighting my own needs and my own health. Why can't something be easy for a change!

I yelled at my children to pick up their toys, and put the coats away, and stop leaving your shoes and boots all over. 

I can't stand it! I screamed, Why can't ANYONE MAKE MY LIFE A LITTLE EASIER!

Again with the drama!

I texted Noah's behavior specialist and said "I can't do this anymore."

It didn't matter that this was far from the worst thing we have had to deal with - I bent as far as I have ever bent before. The only reason you could not hear the cracking was because my sobs were too loud.

~~~~~~~

Today I received a message from one of Kiel's teachers. Thank you universe for my boys amazing teachers - especially this one!

My dearest Kristine. I am having snack with your son and he happens to share how sad you are that you got fired from your job. He doesn't know why "that man would do that". Now she is home taking care of Noah. He was so sweet and concerned when he was telling me the story. Not sure if it is true but if it is I'm sorry you lost your job. :) I'm enjoying teaching your sweet boy. Have a good day.

This child! I am so blessed to have this boy as my son!

Kiel saw me cry at the same time he knew I was working. Both boys wanted to know what was wrong and all I told them was I received bad news. Kiel put two and two together, and since he doesn't know how to add yet, he came up with "the man fired mommy" as the answer.

It reminds me that they see everything. They see me bend, and they see me stand back up.

I wish they didn't see my tears as often as they do. Or hear my screams.

I know that I will continue to stand back up because I have no choice.

Today I know we will figure this out. We always do. We have no choice.

I just hope that when my boys see me bend like I did yesterday, then stand back up as I did today, that they realize they too can stand tall and strong after a storm.

Even better if they can do it with less drama than their mama.


 

The Boy of summer

Despite the tone of the last two posts, we really have had a good summer. Actually, I should say Noah has had a good summer, so we all have had a good summer.

Noah is at a different summer day camp than he was at the last two years. This one has two parts - a special needs part and a "typical" kids part. His group is a bit of a hybrid between the two sides. The staff is well trained, and mostly special ed teachers or in school for special ed. Many of the counselors have siblings with special needs.

Noah loves it! He comes home every day and can't stop talking about how much fun he had. We had a goal for him that he would learn to swim, and he met that goal in week five. Yeah Noah! They have sheep, goats, chickens, dogs, therapy horses, a donkey, gardens, plus all the typical summer camp activities.

They facilitate inclusion and he has had a couple "buddies" from the "typical" side that ask to play with Noah frequently.

I will admit I was nervous about sending him to this camp. I knew the special needs side was highly special needs - mostly low-functioning autism and mental retardation. I wasn't sure how Noah was going to handle that. Well, he has handled it wonderfully. We have had some conversations throughout the summer about how everyone is different, and that some people have brains that work differently and that they need extra help. It's been a good way to work on acceptance and kindness.

The week before he started camp I found out the group he was in was going to range from 8yo to 13yo. Noah was the baby and whether that was a good thing or a bad thing remained to be seen.

Noah has had a perfect summer there. No issues with aggression. A few reminders to keep his feet on the ground and that he is not a mountain goat climbing all over the picnic tables, but basically that is it.

What a difference from the last two summers when I worried every time the phone rang that it was going to be camp calling with a problem and had a constant fear that he would be asked not to return.

For the first time in three years I don't want summer to end! I wasn't sure I would ever say that again.

But in true MNT fashion, I am now worried about school starting and how he is going to handle the transition to a new teacher and the increased demands of third grade work. I had hoped to have more information to give the school about how Noah's brain worked and what he would need to learn, but instead we took a step back from that and are giving TNP time to get to know Noah so she can help guide us.

I'm still concerned about the tic, but I'm no longer crying when I see him do it. He commented today that he couldn't make it stop and it was annoying him. I asked him if it happened all the time and he said no. He was fairly matter of fact about it.

We talk with TNP tomorrow so I hope to have a better idea of our plan for the next few weeks as we head back to school.

Thanks to everyone for all of your support! Your kind and encouraging words mean so much to me! I am very lucky to have such wonderful readers.

Maybe there is a place for Noah?

We looked at a new day camp today for Noah. It's a part special needs, part typical kid  camp. The special needs part is mostly MR and autism, but they offer a program for other special needs kids that is a small group with more support that interacts with the regular camp.

The director assured me that Noah would be with kids that are cognitively OK but have more problems with anxiety and other behavioral issues.

We wouldn't have to worry about fighting the insurance company for a TSS for him. He'd also be with staff that are trained to deal with behavioral problems, so I wouldn't be worried every time my cell phone rings that the director is calling to tell me about a problem.

It's very different from the camp he was at the last two years. The physical space is much smaller. Noah noticed that right away. I'm sure once he starts the program he'll notice they don't have all of the same activities either.

Another family came in to visit while we were there and one of their kids had Down Syndrome. Rich told me when Noah saw him his mouth fell open, but he didn't say anything.

I think that of all our options this is the best one for us, at least for this summer. Of course the cost is more, but if I take on a couple extra work projects that will help. Any thought of a summer vacation is out, but I'm not sure I'm brave enough to try one of those anyway.

Still, I have this deep sadness in me over it. Instead of Noah moving towards a more typical, independent program he seems to be requiring even more support.

I know this is only for one summer. If he doesn't like it we can always go back to the typical camp with a TSS route next year.

Just a couple days ago I found out about a sleep-away camp in NJ that has a program for kids with ADHD and PDD. I've been fantasizing for the last three days about sending Noah there for the summer. It's been very tempting considering his behavior this last week as we try and work through another medication change.

Yeah! For summer camp! part 3

Week three at Knee Path Day Camp* and everything is going well. If you actually read** the last two very long, drawn out, posts I figured you deserved a very short, but positive, update.


We had a "team" meeting last week and everyone was able to let go of the problems from the first week and get on the same page. Noah is doing well with his new group and counselors and M seems to be fitting in well with them.

I'm impressed with the camp and the commitment they have made to working with us and Noah. Impressed and grateful!

Noah is having a great time there and is excited to go every morning. He's coming home tired and dirty every afternoon, which is exactly how he should come home!

Yeah for summer camp!


*Not the real name by the way. If anyone lives in my area and would like to know the real name just drop me an email - mommyneedstherapy @ gmail dot com

**I don't blame you one bit if you didn't read them btw! It was far more an exercise in venting for me, than necessary for anyone else to read.

Yeah? for summer camp? - part 2

*cue campy soap opera music here*

Setting: Knee Path Day Camp (KPDC) - 27 gorgeous acres of fun in the sun!

Cast of characters:

Noah - our adorable six year old and lead character. Must have impish grin, be missing both top front teeth, have big brown eyes and lashes to die for. Must have enough energy to power a small city indefinitely with occasional impulse control and aggressive tendencies. Occasionally known to bite (note missing top front teeth).

M - Noah's Therapeutic Staff Support (TSS). His "one on one" charged with heading off his misbehavior and redirecting his energy so he uses his powers for good, not evil.


P - Noah's Behavior Specialist Consultant (BSC). Supervisor of M. Determines Noah's treatment plan. General go to gal to help deal with any and all problems dealing with agencies, insurance companies, camp, etc.

S - senior counselor of Noah's bunk, the Lions

E - head counselor for preschool thru 1st grade, supervisor of S

D - Program director at Knee Path Day Camp

T - senior counselor of the Panthers, Noah's new bunk

Announcer: When last we left you Noah was set to start summer camp at Knee Path Day Camp after a long battle fighting insurance companies and agencies to receive TSS hours.

Camp day 1 (Monday): Noah is so excited! We visited the camp the day before and met S, his counselor. He had a chance to play on one of the playgrounds and couldn't wait to come back. I dropped him off in the morning with his swimsuit on, full backpack and a big smile on his face. Mid afternoon I texted M, his TSS and asked how things were going and she said great. Yeah! A huge relief!

Camp day 2 (Tuesday): Still having fun and excited to go! At pickup though M is starting to express some concerns about how things are going. She says things are pretty unorganized and the counselors aren't exactly welcoming her. Also, Noah is already being targeted as "the problem child" so if something happens that he is involved in he is getting in trouble without them trying to find out what happened. The camp seems unsure what M's role is supposed to be and M feels like they are expecting her to act as Noah's personal counselor, which she isn't.

M tells me that there are other kids in the group that have problems, and one in particular is getting in Noah's face quite a bit. The counselors aren't stepping in to redirect the other child and M is feeling a bit unsure how to react, because it isn't her job to work with the other kids and she is afraid of overstepping her role.

M tells me that in the afternoon S gave her assistant counselor and the CIT's the information sheets on all the kids in the group to review. Day 2 and this is the first time they are actually talking about the kids and seeing their information. Way to work as a team guys!


Camp day 3 (Wednesday): Kiel's had a cold all week and I wake up not feeling well. I worked half a day and came home about 1pm to sleep for a few hours.

2pm the phone rings and it is M to tell me that Noah bit the kid she was telling me about on day 2. Noah was going down the slide (a tunnel slide) on the play ground and the other kid was crawling up the slide. He tried to stop Noah from going down the slide and grabbed his head/hair and pushed it against the slide wall, so Noah bit him. There was blood, and freaking out, and lots of finger pointing at Noah and M. M stuck up for Noah and insisted they find out the full story. S wanted to know why M wasn't on the slide with Noah (Hello! That's not her job! Why wasn't anyone stopping the other kid from climbing up the slide?) and says that if he does that again he'll be kicked out of camp. It's becoming clear to me via M that the lack of structure and organization in this group is continuing. I think at this point M had some uncomfortable words with the supervisor of the counselors, E.

3pm E calls me to introduce herself and let me know what happened. She expresses concern about Noah's behavior and M's role at camp. She does say though that the child Noah bit has been a behavior problem as well and they recognize Noah isn't the only one at fault, but, because it's biting, it is very serious. I ask if they would like to have a team meeting to make sure everyone is on the same page about M's role there and how best to handle Noah. E says that its difficult to find time for something like that and she doesn't really think its necessary. I expressed some concern that M felt there was a lack of structure and consistency and E says that they can't have a TSS coming in and telling their staff how to do their job. I left it at that because I really didn't want to make any waves and have a huge fear that Noah will be kicked out.

Camp day 4 (Thursday): Noah has a great day according to M. M says she spoke with S and with E and smoothed everything out. She feels more comfortable and I'm not worrying as much. Noah is having a great time and is actually talking about camp and what he is doing there. He rarely did that with school.

Camp day 5 (Friday): Rich has been away since the day before and I am home with Kiel. His cold is worse and his eyes are all goopy so I take him to the doctor. Double ear infection and pink eye. Guess who else has pink eye? So nice of Kiel to share with me.

12:30pm the phone rings. It's E.. There are problems, but not so much with Noah as with M. But, parents have started to complain about Noah, including the father of the child he bit. And M isn't fulfilling the role they think she should be. They don't feel she is being proactive enough and preventing Noah from doing things. According to them M is being very defensive and not doing what they ask, continually saying "that's not my job."

I'm perplexed. This doesn't sound at all like M. I tell E that we think very highly of M and that she's by far the best TSS we have ever had. E says that camp is different than school and so are the expectations. E wants to know how to reach P. I give them her number and then text P to warn her.

Thirty minutes later P calls me to tell me the camp wants a meeting with her and M and they need M to be more on top of Noah, which P explains is not really what M is there for. The camp basically rejects the idea that M is there to help teach them to deal with Noah, and want M to just deal with him herself.

I end the call with P and immediately the phone rings and it is E. She and the directors have talked and they feel it would be a good idea to move Noah to a different group. This group is slightly smaller and doesn't have any "problem" kids in it and has male counselors. They think everyone needs a fresh start. I said go for it. E says they are going to talk with M and try and get everyone on the same page.

Thirty minutes later E calls again to tell me they spoke with M and it did not go well. She says that M was very defensive and kept saying "that's not my job," "you guys are ganging up on me," and "I don't feel safe." E says she got so frustrated she had to walk out of the meeting.

Frankly, I'm shocked to hear this about M and it makes no sense to me. This is not what I have experienced at all. I trust M and have no experience to base any trust on with the camp staff. Yet, when I talk to the staff they sound very reasonable and like they want to work with Noah and have him there for the summer.

E says that they think it is best that M not be at camp until they are able to have a meeting with her and P to clearly define her role. They suggest that Noah go to camp on Monday without M, join his new group and spend the next 2 1/2 days without a TSS since we can't all meet until Wednesday.

I tell them I think they are a little crazy, but if that's what they want to do go for it. Just know what they might be getting in to. And that if they can't work things out with M I don't think I can find another TSS for him to cover the hours, so they need to know the risk. They continue to say M is being defensive and unreasonable.

I also spoke with the program director D who sounds incredibly nice and expresses that they want to work this out, but M clearly can't do it until P is there. He also makes it clear that they want this to work out for Noah and he hopes that the meeting Wednesday can make M comfortable and put them all on the same team.

P and I text and email a few times and agree we are both a bit confused.

I get to camp at 5pm to pick up Noah and am a little (pleasantly) surprised to see M is still there. I had assumed they were going to tell her to leave for the day. I guess she said she wouldn't leave, but they wouldn't let her back with Noah. She told me she had been separated from him for most of the day.

Apparently the problem started that morning when one of the fathers of a kid in Noah's group came up to Noah during the regular drop off time and started talking to him about bullying his son and how he better stop. I'm a little unclear as to what exactly was said, but I guess Noah knocked over this kids water bottle on the first day (I'm still not sure if it was an accident) and then said he was going to do it every day. So M saw the father approach Noah and told the counselor that was sitting there that that shouldn't be happening. The counselor didn't know what to do so he went out to get another counselor. M didn't feel it was her position to intervene with another child's parent but she also knew this guy shouldn't be talking to Noah. By the time a counselor came in to handle it I guess the dad was gone. I'm still kind of unclear on what exactly happened.

So this seemed to set off a chain reaction of events which involved M being in tears several times, lots of finger pointing by S at Noah, the counselors in general not interacting with him, and S whispering with E several times. M called P at this point because she didn't know what to do, and then got in trouble because she wasn't supposed to be on the phone and that she wasn't watching Noah.

I'm beyond confused at this point. M is telling me things, which I have no reason not to believe, and I'm getting frustrated that this camp is basically not wanting to interact with my son. That I'm paying for him to go, and providing him with full time support, so they just feel they are supplying the grounds. Yet, talking with E and D they made it sound like they want Noah to be successful there.

I get home and email P, who then calls me and we agree that it must be somewhere in the middle of what camp is saying and what M is saying. We are both surprised by what they are saying M is doing/saying, but it has to stem from something. We agree that a new group for Noah is a good idea and have hope that this will work out for everyone. We also think they are a little crazy for wanting to try Noah without a TSS but figure they must know what they are getting themselves in to. I kind of feel that E and D have both verbally committed to keeping Noah there for the summer, even if M doesn't work out.

I really feel bad for M. She's a single mother working on her bachelors degree. She is very committed to Noah and is very much his advocate. She's not going to let herself get pushed around and she isn't going to let that happen to Noah either. I know her intentions are good and I hate that this is going on, for her sake and for Noah's sake. I don't want her to hate coming to work every day, but I also don't want to risk Noah not having her there.

Saturday: Ironically we have a family picnic at the camp for our karate classes. Noah is excited to show us everything and I'm a bit nervous because I know it is inevitable that we will run in to the camp owner. We do, and we talk for a few minutes and I thank him for working with us. Rich and I both express surprise that this is going on with M. We all agree that we hope the meeting on Wednesday smooths everything out.

Later that afternoon Noah's new counselor T calls and we have a good talk. I feel good about him and that he will be consistent and fair with Noah.


Announcer: stay tuned as we begin week two at KPDC. Will M and E resolve their differences? Will T be the answer to our senior counselor prayers? Will Noah keep his mouth shut and his teeth off the other children? Will Mommy keep her sanity or delve deeper into the wine cellar?

Yeah! for summer camp - part 1

This was the first week of summer camp for Noah. We have all been very excited for him to go to the camp he's attending. They came well recommended and willing to work with us with Noah's issues and his Therapeutic Staff Support (TSS) (part of his wraparound services). We visited the camp last summer and we were impressed. Finally, an easy decision for us to make. A great camp with all the activities Noah loves, a guarantee he would come home tired every night, and the camp is only five minutes from our house!

Although deciding what he was going to do this summer was easy, I spent most of the school year worried we wouldn't have a TSS for him either because the insurance company wouldn't approve it or the agency we work with wouldn't have one available for the hours we needed.

I don't think I blogged about the struggles we had this year getting a TSS for Noah for his afterschool program. The first part of the year we were trying to change agencies to one that was closer to his school. So Noah had only occasional TSS coverage prior to January. In January we found a new agency but it took a while for them to find the right TSS for him. It took four TSS's before we were matched up with M, who has been with him since April.

M has been amazing with Noah. She does far more with him than any other TSS he has had. She see's his potential and is really an advocate for him. We've been thrilled with her. And she wanted to stay with Noah for the summer and go to camp with him! Yeah! Another hurdle down!

Now all we needed to do was get his hours approved with the insurance company. The insurance company that has pretty much fought us since we first tried to get him wrap around services when he was 2 1/2. The insurance company that we had to go through multiple grievance procedures with before they approved him.

Take make a long, boring story slightly shorter, the agency we are working with could send in the paper work requesting camp hours 60 days prior to the start of camp. I had been talking to them about this since December when I first met with his case worker prior to bringing them on board.

Approximately six weeks before the start of camp they told me he needed an updated visit with their psychiatrist. And then they asked for a letter from camp stating they required him to have a TSS. Then I had to sign more paper work. So just over three weeks until the start of camp I was told his paperwork was submitted. It was our understanding the insurance company had three days to give us a response.

So a week after I was lead to believe the paper work had been submitted I received a call that the insurance company was requiring an inter-agency meeting with the camp, which they would attend. We scheduled a meeting for the next day between the camp owner, Noah's Behavior Specialist Consultant (BSC), me, and someone from the insurance company.

It was 2 1/2 weeks (a Wednesday) before the start of camp and it wasn't looking very good, especially after the inter-agency meeting, where the insurance rep basically told us that no one was ever approved for the number of hours we were requesting (full time) and that basically that was one step before residential treatment. She told us realistically he would probably be approved for ten to fifteen hours.

To say I was freaking out at this point is putting it mildly. I had no idea what we were going to do if he didn't get approved for the hours, because he couldn't attend camp without the TSS. And I had no control at this point about how the paper work was being submitted or what was in any of the reports. All I had was confidence in P his BSC that she was doing all she could to make this happen.

P told me that she went over all the paperwork with Noah's case manager with the agency and it was submitted on Friday. We should know something by the middle of the next week.

So we waited. Wednesday came along and there was no word. Thursday came along and there was no word. I talked with P and she told me the case manager was on vacation that week so she was going to have the assistant check in with the insurance company Friday morning.

By then, ten days before the start of camp, I wasn't going to rely on someone else to get me an answer. So I had Rich call the insurance company to find out when the paperwork was submitted and exactly how long they had to give us an answer.

Well, imagine my surprise when they told Rich that the paperwork hadn't been submitted yet! So I told Rich to call the agency and find out what had happened. Which he did, and received some pathetic excuses. So I had him call back and ask for the head of the agency. At this point the head of the agency was making all kinds of promises about personally delivering the paperwork. And I was on the phone with P, who was PISSED when she found out about the paperwork. And then I was on the phone with T at the insurance company who was telling me we had plenty of time because his camp didn't start for over a week. To which I responded "wtf! if you don't approve him I'm screwed. How am I going to find another placement for him with just a week?" OK, I used less swear words, but I think I got my point across. T promised to call me Monday when he reviewed the paperwork to let me know if anything was missing. He wouldn't come right out and say Noah was going to be approved, but he did alleviate some of my anxiety so I wasn't completely freaked out over the weekend.

So, Monday comes along. One week before the start of camp, and Noah's last week of school. All day I'm waiting for a phone call from someone. Mid afternoon I pretty much said fuck this being patient bit and called the agency to speak with his case manager. I'm guessing she caught hell that morning when she came in to work because she was very accommodating and said she would call T at the insurance company right away.

About fifteen minutes later she called me to say Noah was approved for all the hours we requested!

I think we were all a little shocked! But Yeah! A huge relief! We had a camp, a TSS we completely trust and insurance approval. Let the summer begin!