Saturday, March 16, 2013

The most difficult decision I've ever made, so far

There are, generally speaking, three types of special needs parents. The first type are the extreme optimists, the movers and shakers, the ones that leave no stone unturned and spare no expense to get as close to a cure as they can for their child, and to help their child achieve his or her potential to the max. They don't factor in the toll it takes on their family, their finances, or their own sanity; their disabled child is foremost in their lives and takes precedence over anything else. I'll call this type "A". At the total opposite end, you have "C", the ones who are extreme realists; they know that there is no real 'cure' for their child's disability and they don't want caring for their child to impact their family severely. These parents don't exert themselves too much for their child; they get as much help as they can, sending their child to every respite program, summer camp, send their child to the cheapest/free school program, even if their child will not make progress there. Their sole aim is to keep their child comfortable and happy while trying to continue their lives as smoothly as possible. They don't want the rest of their children to suffer too much, and/or they are not capable emotionally and financially of throwing themselves into the width and breadth of focusing on this one child at the expense of the family's general sanity. Then you have the "middle of the road" kind of parents; the ones who do extensive research into their child's disability and try many different things, but they are realistic about the impact it has on their family and on their financial and emotional resources and don't overextend themselves to the point where it affects their lives into exhaustion and depletion. I'll call this type "B".

I have come across many As, Bs, and Cs even before Dovi's diagnosis. I have found that most special needs families start out as Bs, and eventually the toll on their family is too much and they slide into Type C just to survive. I've also met a few As; the chidren of A families are the ones who go the farthest, but many type A families eventually crumble and must slip into B or even C mode - especially if their child does not end up making as much progress as they had hoped.

Crocs, Inc.

Even more troubling is when one spouse is an A or B and the other is a firm C. I have found that in most cases it's the wife that is determined to do everything possible for the disabled child, while the husband is the one who refuses to shoulder the burden, be it financial, physical, or emotional. Unfortunately that drives a chism between the couple. Many marriages are very strained due to the disparity in their commitment and attitude to their special needs child. Women are wired to work with emotion and men are wired to address their life with logic. The husband may argue that their child will never be 'normal' and therefore all their efforts will only exhaust the family . It takes a lot of hard work for a couple to be unified in their attitude and deicisions on how far they are willing to go for their sn child.

Many families with Downs' Syndrome babies in my community don't even take their babies home from the hospital; they find foster families to raise them. They know how difficult and draining a special needs child can be on their family. (In many cases it's the postpartum wife whose hormones make her ambivalent to actually go through with it and it's the husband with his balanced logic who prevails.) Those that do take their Downs' Syndrome babies home are usually a Type C family, as there is no 'cure' for Down's. They put their children into EEC, then into Bi-Yi, and get them all the res hab, respite, and summer camp they can. These children thrive and are happy and in all honesty, unless they have severe health issues, don't take a big toll on their families. (One notable exception is a family in my community who had identical baby boys with Downs' syndrome, both who have heart conditions and their parents spent months in the hospital with them. Their family did not 'fall apart', but the first year was incredibly difficult on the family.)

It becomes more complicated when it's a disability that is not immediately noticeable, such as Cerebral Palsy or Autism. Many such families start out as As or Bs but eventually exhaust all their energies and slide down into Cs. In my community the CP/ Spina Bifida families mostly fall into Class A or B; since these children are mostly intellectually normal and can in all likelihood get married and lead normal lives, their parents put in a lot of effort into getting the most therapy possible to try to improve their childrens' prospects of a normal adulthood. I have spoken to CP parents who spent hundreds of thousands of dollars and traveled worldwide to try all sorts of therapies and treatments. On the flipside, my husband has a sister with very severe CP; spastic quadriplegic CP. She went into foster care/group homes at age 6. It's a painful topic in his family and I'm not going to discuss it on this blog. The reason I'm mentioning it will become apparent later.

When it comes to autism parents, I have found that most of them start off as A or B, but at some point get exhausted and burnt out and slide down a letter point. When they're dealing with Early Intervention and preschool it's easy to be an A or B. There are amazing programs available for the younger set, and most parents are wise enough to take advantage. Its only when the kids turn 5 when the trouble really starts.

There are very few special ed schools available for kids with severe autism, especially for religious Jewish kids. There are about five schools out there. School A is amazing; they have specialized 1-on-1 schooling all day and lots of therapy. Almost every kid who starts there makes major progress. It's prohibitively expensive, however; close to six figures. This school is very hard to get into; they don't have openings every year, since not every year do they have kids graduating the program. School B is Board of Ed funded, but the program isn't all that great and the children from that school don't make much progress. It's also extremely hard to get into. School C is also a cash school but they're very flexible about payments and costs about a quarter of School A. Their program is actually pretty good, but the administration is very sloppy and communication is very difficult to come by. They are improving every year. They have an open admission policy; they never turn a child away. School D is also an amazing school, with wonderful, dedicated teachers and a similar financial setup as school C, but they are for verbal children only, and also very hard to get into. School E is Board of Ed funded and is not exclusively for autistic children; they are for global disabilities and have very little in the way of ABA therapy. Kids with autism who go to School E do not make any progress at all.

So religious autism parents in my area are plagued with very slim pickings when their kid turns 5. Do they go for the super expensive option - if they're even a candidate? Aim for the Board of Ed schools - for free -  but give up on their kid making progress? Or scratch together some funds and go for School C and hope for the best? Dream of the day their kid will gain some language and hope to get into School D?

It's a big dilemma.

In our autism support group, the mothers run the gamut. Three of the moms chose School E. They tried to get their kid into school B first but of course they got the 'no room' runaround. "What can I do, I don't have the money for school A," said they. They have kids to marry off, and they are realistic - that no matter how good the school is, there isn't really a cure for autism and they don't have the energy or resources to devote every penny and waking moment for this one child above the rest of their children. These kids, sadly, really stagnate in school E; they are all products of TABAC who have remained on the same level as the day they turned 5 and left TABAC. There are two moms who had the financial resources to put their kid into School A. One of them made a ton of progress; he came in completely nonverbal and now at age 11 is talking and toilet trained. This mother is a total type A; she took the kid to private $$$ speech therapy, and works herself to the bone to improve her son's autism. He has made lots of strides - but of course, there is no 'cure' and he is, and will always remain, autistic. The other child in our group, unfortunately, has not made much progress - and this is in super-expensive School A.  Two other moms were accepted into School B and I can't say they've made major progress, but at least they have no financial stress (and their kids can go to summer camp; lately the summer camp have stopped accepting kids from cash schools because the BOE will not pay for summer camp in addition to the 12 month school program.) The rest have opted for School C as the middle-of-the-road approach and have mixed reviews on the school.

I started looking into options for Dovi as early as 3. I focused my eyes solely on School A. I heard the rave reviews on that school and heard from everyone with any knowledge in the autism community that it was the only school to consider; the rest were all worthless. I reeled at the financial undertaking involved, but my husband told me not to worry; he would take care of that. I should only be so lucky to get Dovi accepted - they hardly ever even grant interviews. I was so nervous I already called them when Dovi was 3 1/2 (that was one of the many phone calls I made in this post) but was told that they're not interviewing students for the 2013 school year yet. So i waited a little longer and called them in October. I described Dovi and his abilities. Bernice, the director, was very interested; she told me she was opening a new class next year of just 3 kids, low-functioning ones, and she would love to see Dovi and me. The educational director was impressed with Dovi and they expressed an interest in having him for the following yeart. I couldn't believe it. School A! The Impossible-to-get-into school, the school where most of my autism mom friends weren't even granted interviews. I couldn't believe my good fortune. The school was so incredible, I could see Dovi's future in front of my eyes.

But as soon as this occurred, the full weight of the financial stress began weighing upon me. I was required to make a really large deposit by the summer, and pay the rest of the entire year's tuition by September. I would be able to get reimbursement if I hired an attorney (another five figures...) Often, however, cases are not settled in time for reimbursement to be completed when the next school year starts, so we would have to put down another five-figure deposit again, while already so deep in debt - if we would even find sources to borrow such extraordinary sums from.

I got to work right away. I contacted my good friend Elaine, my brother who had promised to do something for me, and began begging heavily on the blog for donations. I asked my husband repeatedly, every few weeks, if he thought he would be able to handle the financial burden. His answer, shockingly, was very shaky. He wasn't sure he could meet the financial commitment. I started getting very worried.

Additionally, I started having doubts about the school, especially whether I would be able to be as involved as they would like me to be - or whether I even wanted to be as involved. And the more I spoke to the autism mom in my group whose son was doing so well at the school, the more I realized that she had been involved to a point that I wasn't quite ready to be. She lived practically walking distance to the school and she was there several times a week. I live almost an hour away by 3 trains, and it would be extremely difficult to go down to the school. Besides that, I heard that they were very particular about the kids going to school neat and clean, something Dovi is incapable of. I started fearing that the therapists would be making demands like Alice at TABAC, and I'm tired of it. I just want Dovi to go off to school, learn, and come home -- not be subject to endless demands from therapists. I didn't think I was cut out for this type of school, amazing progress notwithstanding. Plus, I started worrying how on earth I would have Dovi on a bus at 7:30 a.m. - he is so little! Every time I thought of the financial commitment, and the slim chance that we would not win the case and thus be out six figures, with no way to finance the next year, I would start panicking. I contacted school A and asked them if I could defer Dovi's enrollment for another year, which would give me some time to canvass donations and find sources to borrow from,a nd it would give him another year at TABAC on pendency. Unfortunatley, Bernice could not promise me there would be a slot available for him for the 2014 school year.

It was getting harder and harder to keep running on the worry treadmill. I just kept believing and trusting in G-d that He would send the money flying through my roof and that all would be fine.

Two weeks before Purim, something seemingly insignificant and petty set the wheels in my brain rolling and everything was suddenly turned upside down, in true Purim fashion.

We recently lost our incredible Shabbos afternoon volunteer, Estelle. By "lost" I mean she stopped taking him. It's a huge hole that we're having a hard time filling. It's two hours in which Dovi ransacks the house and pulverized every mashable food and powder. (After that disastrous Shabbos, I hired a handyman to put locks on all the cabinets and subsequent shabbosim were easier, plus i had hired someone to take him for those 2 hours). When my husband came home on Saturday night from shul, he found the entire house covered in flour, confectioners sugar, you name it. He tried to keep calm, but i could see that he was very upset. it's not the most pleasant thing to walk through the door and find the house totally upended. My husband overheard me telling my mother on the phone that I should really hire someone to take Estelle's place, as it's very hard to find volunteers, but I'm loathe to spend the money on that (I have enough funding for that) as every penny is being put away towards Dovi's Educational Fund. My husband muttered under his breath "Put Dovi into School B and hire someone!"

For some reason, his comment struck a raw nerve. For a long time, my husband and I have not been on the same page as far as Dovi is concerned. He loves Dovi with a fiery, burning love that is unexplainable - he loves him even more than I do. Dovi and him have a soul connection that they have with no one else. He has oodles of patience to him, has him under a behavioral control that i don't have, and in all honesty spends way more time helping me with Dovi than any other special needs father I know. On days our Home Health Aide does not come, he bathes him and puts him to bed. He is able to get him to eat when I can't.  He takes him out on Friday and shabbos afternoons and any other time when he is off from work and Dovi is not in school. He is the most caring, devoted husband and father on this side of the Atlantic. However, he is realistic to the point of pessimism  He doesn't believe that Dovi can get much better, and he doesn't really value whatever improvement Dovi might make since he will never be 'normal.' He is always on my case to find more res hab girls, get more respite weekends, more volunteers... it's very annoying and aggravating, especially as I spend hours trying to procure just that; interviewing girls, filling out endless paperwork for respite weekends, chasing down leads and making phone calls and texts to the people involved. I don't enjoy nagging the Respite House or Estelle for additional hours when they clearly have told me they can't do it. But I do it for him, as I know he has my best interests - and the family's best interests in mind.

But since Dovi got accepted into School A, there has been an undercurrent of extreme tension in this house. Most marital strife is money-related. In this case, it was my mute, telepathic nagging to get some money and loans together for School A. it's my hoarding of every extra cent that can be used for extra help for Dovi. Clearly, my husband does not think that a six figure debt is worth it, and that Dovi making 50% more progress in one school over another is not a financial sacrifice worth making. These doubts have also been percolating in my mind for a long time, and my husband has kept hinting that he firmly believes this. It has been a sore point in our relationship for the past two-and-a-half months, and it's only my blind faith that G-d will provide us with the money and my deep hope that Dovi's glorious future lies in School A that kept me pushing forward.

But this simple, nonchalant statement on that exhausting Saturday night finally pricked my rosy bubble of hope. it was the proverbial straw that finally broke the camel's back.

I spent hours Saturday night tossing and turning, very conflicted. I came to the stark realization that I was fighting Dovi's fight alone. As deeply as my husband loves him, his realistic-to-a-fault attitude will never change. I will be fighting the School A battle all on my own, with little support from him. His experiences growing up with a disabled sister and seeing the strain it placed on his family for the duration of her living with them is coloring how he sees the entire situation, and explains his constant attempts to get Dovi out of the house as much as possible - to maintain our sanity and ability to continue as a functional family unit. And since he doesn't believe so much in Dovi's ability to make  huge strides and turn into an independent teen and adult, his heart isn't set on this school and the financial pressure it creates. Plus, in all truthful honesty, he really does not know where to get the money from.

I know one thing: I cannot allow Dovi to come between us. We need to remain united on the same front. We need to be on the same page. And since I know my husband will not join me on my page, I will have to join him on his. We cannot become one of those families whose differing level of dedication drove a wedge between them.

It was extremely difficult to let go of my dream. I mean, for crying out loud, Dovi had gotten an interview, and an acceptance, into a school where so many are dying to get into! My kid got into Harvard and I'm turning it down! But what can I do - I can't afford Harvard. I don't have any scholarships, rich fathers-in-law, or a six-figure income. I was driven by idealism, by my belief in Dovi's potential, but there is no realism to my idealism. I don't have the funds.

I don't want to be an A parent who is forced to turn into a C parent. I want to remain a consistent B parent.

Slowly, slowly, I let go of my dream. So Dovi will make 50% less progress, in a lower tier school. The question, however, was where he would go instead of school A.

School E was out of the question. School D would not consider him since he's not verbal. School B is keeping me in limbo; I submitted his application numerous times and have not even gotten a callback. That leaves School C. Unfortunately I have heard so many negative things about them, that I didn't know what to do.

Then it occurred to me to call Tova. Tova is the sister-in-law of my neighbor whom I am extremely close to. Her story is extremely sad; her son was a regular mainstream child who was a little spacey; he had SEIT and OT and whatever, but he seemed to be getting worse. At age 4 1/2 the principal of the school called her and told her that he really needed help and that regular school was not a place for him anymore. Tova went to several schools - higher functioning schools that are not even among the 5 meant for the lower functioning population - and eventually she settled for School C. She is an extremely intelligent, well-thought-out type of person, and i knew that her opinion carries a lot of weight.

So the next morning I called Tova and talked to her for a very long time. She is actually very impressed with School C. Their program, she says, is very good. They have excellent therapists and teachers and devoted paraprofessionals, who are all bilingual. Their clinical director has 20 years of experience; they have a behavior specialist on staff who is actually from School A; the atmosphere is warm, loving, devoted and a lot more "Jewish" than in school A. They have a Rebbe every day who davens with the boys; they do lots of Jewish crafts. In addition, there are some practical considerations that definitely make School C more desirable than School A. They don't have legal holidays off; they have their own private ambulette service instead of the unreliable BOE mini buses; they are an easy, 45 minute direct city bus ride away for the times I need to go to the school myself. However, they do have plenty of faults. The administration is very sloppy and difficult to reach. communication is very difficult. But I think that when you're a seasoned autism parent who has dealt with other schools before, and if you're pushy like me, you can manage to get through to them. Financially, they're a lot more manageable; their fee is a quarter of what School A charges, and it's payable over the 12 months.  

It was all mind boggling.

However, I had an additional trick up my sleeve. If I was putting Dovi into a second-tier school, I really wanted him to continue for another year at TABAC. In all honesty a third year at TABAC is even better than a first year at School A; he is making progress quite nicely, and a first year at any new school, especially one where there's a language barrier and a slight change of methodology, usually means many initial months of no progress.

Sunday night I sat down with my husband and gently explained to him that I was giving up the fight for School A; peace in our home means a lot more to me than Dovi's potential, hypothetical progress. My husband innocently asked me, "But didn't you say there's no option really - it's either School E and stagnation, or School A and six-figure debt?" I told him about School C, which is an option that never occurred to me before. He liked what he was hearing. And just like that, a huge stone rolled off our chests. Peace was restored, the atmosphere around here improved greatly, and to be honest - I feel relieved. All the doubts and angst about School A were over. The dream was so difficult to give up, but I did it for a greater cause - for the sanity of the home, the healing of financial choking, and in many ways, to submit to G-d's will.

So Dovi will not make amazing progress. But hey, maybe he will. What do we know? Who says his destiny lay in School A? We shall never know.

The next step was actually speaking to School C, and seeing if TABAC was on board with a year of pendency. I had a very pleasant conversation with the Clinical Director of School C and we made up a time a week later for me to come visit the school and see it for myself. Sarah of TABAC was overseas for a week, though, and I would have to wait for Wednesday to talk to her.

Things got seriously complicated on Tuesday, when Bernice of School A called. She had somehow gotten wind of our plans (HOW?????) and needed to know for sure whether we were putting Dovi in next year or not. I felt terrible; I was planning to send her an email of our decision on Wednesday! This was not how I had intended for her to find out! I apologetically told her that the sole obstacle was money and I felt really bad doing it. Bernice then had a novel idea; there is a way to try to get a certain type of funding if you're low income. She would still take Dovi provided that I had that kind of funding arranged before the school year starts. I called the right channels to try to set it up, but I was afraid of taking the risk of it not working out and then staying stuck without a school for Dovi at the last minute. I kept getting conflicting information from different sources. My head was spinning. I had convinced myself that another year at TABAC followed by School C were not a bad idea, and I had started seeing all the flaws in School A. Suddenly, if School A was back within reach, I was having a hard time overlooking the negatives of School A and psyching myself back into being excited about School A.

It was a very tough day and evening. I couldn't wait for Wednesday to just go and see School C already, and talk to Sarah to see if Pendency was even an option. My brain was spinning and my stomach was churning and I had no rest.

Unfortunately, my visit to school C was a disappointment. I cried when I walked out; the place was noisy, messy, chaotic, overwhelming; I couldn't see Dovi lasting more than an hour there. The paras and teachers were dolls; the kids were happy; the atmosphere was warm, friendly and jovial. But I couldn't see Dovi making any progress in a place like this. I spoke at length to the Behavior Director and saw that they were working very hard to build the place up. The question was whether this Behavior Director would still be there next year or the year later when Dovi would start here.

After I left School C I was so confused and devastated; I wanted to visit School A again simply to justify my inevitable decision to pull Dovi from School A's acceptance list and move him to school C. I wanted to make sure for myself that the atmosphere at A is indeed cold and sterile and unloving, just to make myself feel better about the warmth and love at School C. I also wanted to see for myself whether School A did have all the sophisticated equipment and technology that I had seen the first time; maybe School C wasn't so bad? Unfortunately none of the administrative staff were in at School A, so I couldn't come over. Oh well.

The entire way home from School C I mulled over the choice. It was so tough. I knew I that there was no other alterntative for me; I would have to make it work. The best option really was to do Pendency at TABAC for a year to give him the best boost to then enter School C, where I know his progress will probably stall. So I headed straight for TABAC to make my plea. I was relieved to discover two things: TABAC was also pretty noisy and messy and Dovi was thriving there regardless. I also learned that all schools besides for School A employed paraprofessionals as the 1-on-1's in the classroom, so he wouldn't be getting inferior education in School C, since Schools B and D had that system as well. The paras at school C had weekly training and I had watched them in a work session and they were doing their job well. Sarah at TABAC listened to my situation and explanation of why I felt Dovi would do wonderfully if he continued another year at TABAC; if he  couldn't  go to School A and HAD to end up at School C, the least I could do for him is give him an excellent third year at the program that was finally working for him. Sarah was initially noncommittal; she didn't think TABAC has anything left to offer Dovi, but once I explained to her how unhappy I was with School C and that his progress would likely stop the minute he graduated TABAC, she promised to think it over.

Wednesday and Thursday were very difficult days for me. I was going absolutely bananas weighing the options. Obviously, Pendency at TABAC was the idal choice.But if that wouldn't happen, was it worth jumping through hoops and bending over backwards for School A? Could I stomach to send Dovi to School C? I was losing my marbles.

My husband went to Europe for a few days for the yahrzeit of R' Elimelech of Lizensk. I dropped off Dovi to the Respite House and cried bitterly as I got back into the car. I have a very hard time taking Dovi there myself, as I always feel terrible to leave him, even though he loves it there. I used that moment to daven to HaShem to give me clarity. A minute later i had an email from Bernice. She was going to give me as much time as I needed to pursue her scheme of getting funding ahead of time; she would hold Dovi's slot for me. I was stunned. And a little upset. I so badly wanted to put School A behind me already - I couldn't stand the constant yo-yo'ing! Now I had to wait until after the weekend when the advocate I had been consulting would return from vacation so we could discuss whether this was doable.

When I finally got to speak to her - almost a week later - I was left with an even bigger headache. The steps she outlined me for putting that plan into action was very confusing and complicated, and I didn't think I could handle it. Bernice didn't understand why she had made it sound so difficult. So I spent another awful week vacillating back and forth and up and down and going absolutely insane. It was a constant roller coaster. Part of me kept saying, "You're making a mountain out of a molehill. This school is exactly what Dovi needs, and so what if you have to go through a little stress in order to make it work? This other family made it work, and so can you, and stop being such a baby and scaredy cat."  The other part of me would argue, "Your life is stressful enough. You can't play around with a six figure school. What if the whole settlement thing doesnt work out? Then you're out the money for the previous year and have no money for the next year. Your husband will never be supportive of you if you have an issues with the school. Just put him into School C; it's way less stressful and more practical." But then I would remember how gorgeous School A is and think of just how much progress Dovi would make there, and just how little he would probably make in School C and my resolve would waver. It got even worse when TABAC came to a decision that they didn't think another year there would do Dovi any good - which is absolute baloney, because it is the only place aside from School A where there will be any measureable progress. They were however, okay with keeping Dovi for the short while until I could obtain funding for School A, if I were to go along with that alternate plan.

I spent a good month walking around with extreme anxiety, robbed of any sort of peace of mind. The scenarios rolled through my head around the clock, like a bad movie I couldn't turn off. The more people I spoke to, the more conflicting advice I got. Neighbors, friends, siblings and my mother encouraging me to drop School A already and move on. Educators in the special ed industry and even my own therapist kept trying to help me figure out a way to still make School A work, because it is apple and oranges compared to School C. My husband and the advocate were not helping me reach a concrete conclusion, and I kept going in circles, unable to let go of School A. Every time Bernice or the advocate came up with a new idea, I would get excited again about the possibility of making School A work. It was endless and constant.

Several days ago I had my aging-out IEP meeting. If you recall, at the previous IEP meeting when Dovi turned three, I had an amazing hashgacha pratis incident. Apparently, IEPs come with hashgacha pratis in my life, for I had another astonishing incident this time. I was extremely nervous for the meeting; my stomach was tied up in knots. Unlike at the other meeting, I would be going alone; no one from TABAC was available to accompany me, and I was terrified. Plus, the BOE was a little annoyed at me because I had postponed this meeting twice - once because I hadn't received the notice in the mail, and the second time because my head was all discombobulated and I was still reeling from the terrible accident that had taken my cousin's life. So I was really scared. Then I saw the letter, which arrived just a few days before the meeting, and I couldn't believe my eyes. The District Rep/School psychologist was an old friend mine!!! We share the same name, grew up together, are old friends, and Dovi is even named after her great uncle! I couldn't believe it. This meeting wouldn't be as stressful as I had anticipated.

As a matter of fact, it turned out to be a breeze. We spent most of the time shmoozing, laughing, crying, looking at pictures of Dovi, and discussing what it was like to be a parent of an autistic child. I was once again shocked at how HaShem is looking out for me, quietly helping me reduce the stressors involved in continuing to raise Dovi.

The next day, something happened which has inched me closer to a final decision about the school. Bernice called me, and it turns out I had been laboring for 2 weeks under a major misconception. Apparently, Bernice is only willing to hold Dovi's slot til September - and here I had thought she was giving me an unlimited amount of time! In all likelihood, I will not be able to come up with the funding she needs for Dovi to start; the extreme time constrainments and rush-rush slapdash procedures and hoops I'd need to jump through to make it happen are not within the realm of possibility for me right now. It would totally negate the difficult decision that took every ounce of courage to make, to let go of the dream of School A in order to preserve the peace in the home and my mental sanity. Meantime, I spoke to Tova again to try to make myself feel better an discovered that School C also has aquatics therapy - which is so up Dovi's alley, as he LOVES the pool and has even taught himself to swim! - and they are getting in a new excellent assistant director for next year. The school is definitely on the up and up. In addition, Bernice is not closing the door on the possibility of Dovi attending there at some time in the future if and when the stars align and I can actually make it happen. I had felt very bad about letting Bernice down when she was so ready to help us and seemed to really want Dovi in her school. As my cousin, who is also a parent of a child with a disability told me, 'Dovi is very young. It's okay to make a mistake and put him into the wrong school for a year. There's plenty of time to get him settled in the right place.' I disagree with that, as I feel the younger they are the bigger their chances of making progress. But it's not goinna be the end of the world if School C doesn't end up working out for us. We'll have tried our best.

It was difficult to put aside my own dreams and hopes for Dovi's future for the greater good of the entire family. But I feel good about it. I have the best intentions in doing this, and HaShem knows that. He is the one pulling the strings, and He knows what's really the best for all of us, including Dovi. I haven't informed any of the schools yet, as none of this is set in stone, but I think that the extreme mental stress of the past month is now behind me and I have finally moved on.

I am still collecting for Dovi's educational fund, because School C is still going to cost us, as well as the legal fees to work out the reimbursement. I thank each and every one of you for your kind donations. But the fact that the money isn't rolling in anymore isn't bothering me; I don't feel the extreme pressure I have been feeling the past few months. And that in itself is a reason to smile.

9 comments:

  1. I agree with you about the wrong place being a detriment to the child, regardless of how old he is. I think you know NS was in a mainstream nursery his first year (he was 3 1/2) and it was a disaster for everyone. It did him NO GOOD whatsoever and added stress on me and the teachers.

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  2. i hate all the endless options and differing of opinions. i have no idea what the right school is for my son. thanks to your blog i do know that i highly doubt that my son will be mainstreamed at age 5. i am working on age 3 schools.

    my dd is in a special ed school. there were hoops to jump through for funding. it was helpful to talk to the other parents for support. and how to go through the court case etc... bh the school is very supportive and works with the parents we are not on our own.

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    1. Wow thanks for tht! do you mind ocntacting me via email & telling me which school ur dd is? I wonder if it's any of the 5 schools I mentioned.

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    2. Believe me, even for school C i will have to jump thru SOME hoops. But for School A I'll have to bend over backwards and into a pretzel and the timing also isnt right for reasons I'll explain some other time.

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  3. How totally heart wrenching. Heck, I stressed for ages over which first grade to put my big girl into, and what was at stake is peanuts in comparison. But I am so pleased that Hashem is sending you clarity and shalom, and IY"H things will only get better. Thank you for sharing.

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  4. this post definitely clarifies your choices and a lot of the different talk and options you've been referring to the last little while.

    interesting how you divided up the parents into 'A's, 'B', and 'C's. I definitely hear that. Unfortunately, I have had to deal with some 'D's - parents who don't even care about whats going on and dont bother to show up to orientation, can't be reached by phone and dont seem to have any interest in contacting us teachers unless the kid shows up without his hat....

    Youre doing a great job at navigating this for him and trying to balance his needs and that of your whole families....keep it up and good luck!!

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  5. wow,there's nothing like the relief of finally coming to a decision...good luck and keep us posted!

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  6. I think you're overgeneralizing the different parents out there. I think it's a harsh and inaccurate assessment. I know nearly no parents that fit into those specific groups. I'm absolutely astounded by this and just have no other words.

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    1. I tend to agree with anonymous. When we first started our journey with Savanna, there were police looking over our shoulder at the hospital because they thought we had shaken our baby. We have been judged ever since. The old saying that money doesn't matter and can't buy happiness is not entirely accurate when it comes to SN parenting. Once educated, it does become clear that no amount of money can fix some things as you state, but it sure can make a lot situations easier.

      I used to think some parents were as you describe: C or don't really care. I watched this first hand after spending so much time with our daughter in the hospital. Then, it finally hit me one day when talking to a therapist who was fitting her for AFO's. He said, "You know, some people just aren't capable of dealing with the situation." I recalled seeing kids with horrible diagnoses who more or less lived at the hospital, because, even with medicaid the parents just were not able to comprehend the situation and manage it 24-7. I thought about some of my experiences, and now have a different viewpoint. And I do think it is very important for our other children that while they grow up understanding the situation with Savanna, that there still an environment for them to thrive. Every family penny can't be spent on Savanna, some of it has to be dedicated for those kids too. Classifying me or others as B or C parents is for that regard is inaccurate.

      Since Savanna's epilepsy diagnosis, our circle of friends has changed, and even some family are now more distant (some are closer). Watching other people react to hearing even just part of her journey with seizures is interesting. Despite the immediate clarity of how they handle that situation, it doesn't reflect on when they might be able to provide in terms of parenting if thrust into the situation first-hand.

      The first day we got Savanna's dx, the epi said "You need to mourn the loss of your normal daughter, she is gone. And, 85% of all marriages end in divorce in your case." It was a devistating diagnosis and conversation as a whole. You assessment on crumbling families with SN kids is right on. I have seen the best situations work when there exists clear roles for each parent and caregiver while everyone is on the same page of music.

      -k

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