Submucous cleft palate

        About a year and a half ago when our daughter was two, we discovered that she had a submucous cleft palate. What is a submucous cleft palate? Here is a definition from cleftline.org

      A submucous cleft palate is one type of cleft palate. The word "palate" refers to the roof of the mouth and the term "cleft" indicates a split in the palate. The palate consists of both a bony portion (hard palate) and a muscular portion (soft palate). At the end of the soft palate, the small finger-like projection of tissue that hangs down is called the "uvula". The term "submucous" refers to the fact that the cleft is covered over by the lining (mucous membrane) of the mouth. This covering of mucosa makes the cleft difficult to see when looking into the mouth.  Thus it becomes difficult to diagnose. The Dr explained to us that he doesn't actually see the muscles split. When he shines a light into the mouth, he looks up at the roof of the mouth to see if he sees a blue line going from the front and stretching to the back. That, he said, is an indication of a submucous cleft palate.  

      So in all practicality, what did this mean? Well, we knew something was not quite right because right from the start she had great difficulty feeding. Moments after she was born I tried to nurse her and she was barely able to latch on, let alone suck properly. She made a sort of a clicking sound with every suck. I am not sure if her tiny and very week cry was connected to all of this, but for the first few months of her life she actually sounded like a little mouse with quiet squeaks when she would cry. The nurses said they have never seen (or heard) anything like it. She even struggled to latch onto and suck from the bottle. I remember trying every trick in the book, working with a few different lactation consultants to try to be able to nurse her, but with no success. I would cry, she would cry because she was tired and hungry, then I would pump the milk, still teary eyed, and try to use the SNS. - Supplemental nursing system.

       I remember smiling and half laughing with tears in my eyes saying to my mother, "With all of the pumping, tubes, and shields there is absolutely nothing natural about nursing here!" 

      I did eventually fall into a routine of pumping for her, but I kept hoping she would eventually be able to nurse. (I think not letting go of the fact that she could not nurse wore me out. To me nursing is an extension of the umbilical chord, so I guess you can say it's very dear to my heart. It's a bond that I cherish, so there were a lot of tears during the first few weeks after her birth.) She fatigued too quickly while she was eating, so the rest of her meal I would feed her through a medicine dropper. Her food would also often go through her mouth and come up and out through her nose, causing her to choke and have difficulty breathing. I would feed her, propped up, holding the bottle in one hand and a suction to suction her nose out with the other to help her breath as the milk would come up through her mouth and nose. It almost seemed like there was a hole going from somewhere in the back of her mouth straight through to her nose... which we later found out, there pretty much was. Feeding her was a whole song and a dance, so much so that at one point I was ready for a feeding tube, but we did manage to keep her in the 10th percentile in weight. 

      Later, speech became an obvious problem. For the life of her she simply could not make most of the sounds. Looking at her I knew she completely understood what we were saying, and what she wanted to say, but just couldn't. Together with a fabulous speech therapist we began teaching her sign language. In no time at all she mastered about 100 signs, which soon became to 200 +.  At the recommendation of her speech therapist I took her to a local baby sign language class. It was there that I met a mother who asked me why my daughter was not talking. I told her it was because she seemed to have a high palate, to which she responded there was no such thing. I described her symptoms and she told me to make an appointment with a specific Dr In the plastic surgeon department and ask him to look for a submucousal cleft palate.

      Currently I think there are only two ways that they make the incision to do the repair. One is done by doing pretty much one straight cut, and the other, older method is called the radical method, in which they do a zig zag incision. I spoke with two different mothers who had the radical method done and they told me that later on, each of their children had to go back for a repair. After some quick research I did manage find a doctor in the same group who did the straight incision. 

      A couple of weeks later we were sitting in the Dr's office, waiting for the Plastic surgeon to enter. An incredible speech pathologist walked into the room with the plastic surgeon  They were very professional, asked a few targeted questions and then the speech pathologist took a look in her mouth. 

"Oh yes, I see it. She definitely has a cleft palate."

      I was so relieved we finally got to the bottom of her symptoms. Next we began discussing the option of surgery and its procedure. It sounded very intense. The operation typically takes about 90 min. They cut open the roof of the mouth to get to the split muscles and sew the muscles together. The kids stay overnight in the hospital for about 4-5 days. When they go home they are sent home with arm bands to prevent their elbows from bending. This is to prevent the child from putting anything into their mouths that may split the stitches. In order to allow the stitches to heal properly they may only have clear fluids for about one week, and just liquids after that until a follow up appointment to confirm that the incision area has healed. This typically takes about one month, in rare cases a bit longer. ...In my daughters case, because of her unusually thin skin, it took her 3 months.     

      We scheduled the appointment as I saw she was continuing to struggle with speech (still only two speech sounds), and eating was draining... but I was scared. I wasn't sure if I was making the right decision. To put her through that? I found two other mothers who, their own children also had this procedure. They were able to tell me a little bit more about what to expect. I was still scared. At one point I almost canceled the whole thing. Yes, I realized that in the long run, this would require her to be in speech therapy for many, many more years, and eating may always be tiresome for her, but my emotions were beginning to get the better of me. Yes, we were still going through a whole song and a dance to feed her (I had an enormous supply of medicine droppers and syringes), and get the right amount of calories into her, but never the less, we were doing it. She was managing to stay in the 10th percentile, and we were avoiding a feeding tube. I felt like I could continue feeding her the rest of her meals through a medicine dropper as long as she needed it. I was just too scared to put her through the surgery.  Finally I called an older and wiser mother of many children and told her what was going on. She listened, then told me that the Lubavitcher Rebbe  would often tell people to get a second opinion, specifically from a Dr who knows your family, whom you know and trust, and go with that advise. 

"Find another Dr who knows you and your family well, one who you truly trust. Ask him his opinion and do what he says."  she told me.

     So I did. In my mind, I truly did not want to go through with this, and was on the verge of canceling, but I told myself that I will follow his advice no matter what. My husband contacted another Dr whom we really trust and who knows our family well. After explaining everything to him, I was a bit surprised when he told us to definitely go through with the surgery, but oddly enough I felt calm about it. I figured I would follow the advise of the Rebbe, and just put my trust in G-d. Surgery was scheduled for one week before Rosh Hashanah. 

      We arrived at the hospital and were called back and admitted pretty quickly. I was suddenly so nervous I felt like it was me going into surgery. I got her into her hospital gown and just talked to her and gave her hugs. She knew something was up but obviously did not understand exactly what. They gave her a little verset (I should have asked for some for myself! I really wanted to ask the Dr for some but I figured he would think I was nuts). As soon as the verset began to kick in, my husband carried her to the surgery room and stayed with her until she was fast asleep. As they walked down the hallway she looked back at me and cried the whole way. My heart was breaking. 

      About an hour and a half later the surgeon came out to tell me that the surgery was a success. Thank G-d. It was over. I went back to recovery and sat down next to her. They had her on some serious pain killers, as she was still very groggy from the surgery. Her mouth and lips were swollen and there was blood trickling from her nose and mouth. It was not that much blood but to a mother looking at her child, barely conscious, swollen and in obvious pain, it looked like a lot. For the next three days in the hospital I kept wiping up her blood, held her, rocked with her, tried to distract her, from her constant pain, IV's, sang to her..... I did whatever I could to keep her as comfortable as possible. She truly looked miserable, but thank G-d the Dr didn't hesitate in prescribing her more pain killers. They told us that typically the kids stay about 5 days, or until they can drink enough liquid by themselves so the I.V. can be taken out. She was not allowed to suck from a sippy cup or bottle, as the sucking motion would split the stitches. By day number 3 I was so dizzy from lack of sleep and food. I began to slowly give her liquids through a medicine dropper again, since her mouth was too swollen to drink from a cup, and she hadn't mastered that anyway, and again, a bottle was not an option because the sucking would strain the muscles and split the stitches. We had success with the dropper. I figured the sooner we could get home we can all get more rest, and recovery (with a lot of pain killers) should go a bit smoother. Thank G-d we were able to leave the hospital the morning of day 4.  

      I tried my best to keep the arm bands on her. By week number 3 my little Houdini was a master at slipping out of them. We even taped them to her shirt, but she got around every trick in the book. Instead of fighting her I just kept a very close eye on her and made sure the house was constantly clean with nothing she could possible put in her mouth. Meal times were a bit stressful since she was upset she couldn't have anything, so I would often hang out with her in a different room. (Remember, this was holiday time.) She pretty much lived off of apple juice, hypoallergenic formula mixed with rice milk (for extra calories),  and yogurt until we got the ok to begin eating crunchy foods. 

     I would like to add here, that these children can only go to a special orthodontist who is experienced in handling fragile or thin skin and muscles. If the child needs an expander or other orthodontic work, remember that you want to be very delicate with the skin and muscles. We were advised that when the time comes, we should stick with the pediatric orthodontists in the hospital.  

      Was the surgery a success? Thank G-d yes! One week after surgery she looked at me and said "Mommeee".  The only sounds she was able to make prior to the surgery was the "Ahhh" sound and the "Mmmmm" sound. As the swelling went down and time went on, she slowly began making more and more sounds. It was really exciting when she learned that all of the signs in sign language that she had learned she was now able to say them! And if we still had trouble understanding her, she would pull out a sign for us. It was pretty cute. Eating also became less tiresome for her.

         It is now almost a year and a half after her surgery and she has finally reached the 50th percentile on the growth chart and is talking up a storm. I am glad we went through with it, and forever grateful for the wonderful doctors, the guidance and timeless advice we received to encourage us to properly help her. I hope in writing this to somehow help and encourage other parents who may find themselves on this path. 

- Matana B.

                           
                          The picture below was taken about 2 months before her surgery. 

                                                                           

Why we homeschool

      So what does our "typical" day of homeschooling look like? Well I guess that is almost like asking what do you eat every day. It always varies, but here is a little idea. 

      The kids slowly came downstairs help themselves to breakfast. Often I come down to the house smelling of grilled cheese sandwiches, a messy kitchen and dining room, and for the most part, satisfied children. After davening my son has been checking the news and then may pick a history documentary to watch before his official classes begin. Depending on how dreary the winter weather is, he often enjoys bringing a cup of tea to his class. I spend time with the the other children and daven, have a snack (or breakfast number two) do our math, play a little, read together (this includes parsha, stories on Yom Tov and pretty much everything and anything educational), sing, listen to story and music CD's, depending on how messy the house is we may do an arts and crafts (although today was a trip to the library instead), laundry, try to clean up (today was clean up the mural my toddler so proudly made using black (washable) paint all over the walls, window, table....ok, I will stop there, talk, play... and the list goes on. 

                                                                                                             Photography by Mendel B

      We began homeschooling with some pretty basic goals.

 To have an enthusiasm and a love for learning, and to be very much a part of what they were learning. I wanted to share in their excitement of learning.

To see the kids play happily by themselves and with each other. (With the exception of a remote control helicopter and race car, to date we do not own battery operated toys.) 

To be comfortable and content in their own skin. To have a healthy sense of self worth and value.

 I was looking for a more relaxed environment at home for our family. To have more opportunities for quality family time. More time to spend with the kids and to just plain enjoy each others company. 

To be able to work more on character and Midos and to instill in them a passion and a love for Yiddishkite. 

And last but not least, to have more time to work on our relationship with each of the children.  

                                             

Creating large "hail stones". We spoke about the hail that Hashem withheld in the sky and later let it come down during the times of Yehoshua. The drama of large hail stones coming to life!                                          

Photo by Mendel B

Below: Doing Math-U-See

                              
                                                                   

                            Below, early fall. No, we didn't have to worry about bedtime and homework.

                                     
                                       

Musings

      A few weeks ago I tried to order a new set of contacts online, only to find out that my prescription had expired just a few days earlier.

"What?" I asked my husband. "Can't I just change the date??"

"Uh, no. That means you have to schedule a new appointment with the eye doctor to get an updated prescription."

"And when am I going to do that?? In between the therapies, Dr visits, errands....!?? Why would they make a prescription expire??? I can't just drop everything I'm doing and make an appointment for myself. I hate making appointments for myself. I can't believe an eye prescription would expire!! Don't they know I can't just drop everything and go?!?!...and on and on I went.

       Of course I realize the importance of why they would do this, and I think I am a prime example. It's to make sure people set aside time to take care of themselves.... but sometimes it just seems like too much effort. I would much rather take care of the kids and family to ensure things keep running smoothly and the house doesn't fall apart. Yes, I realize this habit could be a recipe for disaster if the needs of mommy are ignored, but..... wait a second! A thought just came to me. I can take one of my kids along with me and have some one on one quality time with them. Yes! I think I will do just that. I quickly picked up the phone, made an appointment and got ready to go.

     My oldest came along with me. It was nice to get some quiet time with him. I can't believe how quickly he is growing up. I tried to size him up to see how we are doing as parents. He was smiling. That is always a good sign. I am so happy we chose to homeschool. He seems to really be growing. It's interesting that the very things that motivate his younger brother to learn, such as a little peer pressure, comparing grades and progress, a bit of competition, are the very things that seemed to be turning our oldest son off. As soon as we found an educational path of no tests or grades, just a laid back enjoyable approach to learning, he relaxed. He is enjoying learning and is once again embracing it. It's beautiful to see. This morning he was busy looking up facts on the Hindenburg, helium balloons, the Wright brothers and the Gold Rush in 1849, just to name a few. We do not follow a set curriculum for everything. Often times I find that the most effective path to true learning is to just let him follow his interests. He has discovered a great interest in Halacha and Chumash. It's really beautiful to see.

                                                                                                             Photography by Mendel B
   
      Yes, I worry that the kids may "fall behind" academically and not be up to where their peers are in "regular" school, but I need to keep reminding myself why we are homeschooling.

      Why are we homeschooling? There are many reasons that come to mind and for the most part they probably overlap each other. Where to start? Well, I was having a hard time connecting with each of our children after they would come home from a long day in school, tired, irritable, hungry, homework... Then there was dinnertime and bedtime. I guess the pace of life seemed to be going too fast with too many deadlines to meet. I don't know. I don't know how other parents are able to successfully do the "brick and mortar" school and still have plenty of quality time and downtime together as a family. But I knew that our daily routine wasn't working for us as a family. ....and of course there was the morning insanity of getting everyone out the door in one piece, dressed, fed, homework in hand, on time and smiling. Having spirited children with all sorts of different needs, special needs, high energy etc... I was frantically looking for a different way of life. And then of course, there was the individual reasons for each child why we chose to homeschool.

      It's amazing to me how there are no two homeschool families who are alike. Each of us are on our own individual journey of connecting with our children, finding joy in learning and bringing spirituality into our homes.

  

Mommy, my Iguana is on the roof!!!

"Moooooomyyyyyyyyyyyyyy!!!! My Iguana is on the roof!!!" I heard my 9 year old yelling from the third floor.

"I'm coming!" I called back up the stairs. "Where is Sruly?!?! Is the window shut??"

"MOMMY!!!! My chess set!!!"

"Ok, Ok. Sruly come down!"

.........Wait a minute, let me back track for you.

             Our dear son, Sruly, has been going through a bit of a rough time. I think it began sometime during the end of last school year. Now, when I say "a bit of a rough time", in my language, I mean more stimming, but in your language, the reader, I mean chaos. At least that's the word that comes to my immediate mind.

            So where should I begin?.....

            Well, Sruly loves to see things fly and float through the air. He has discovered over the last few months that incredibly, every time he picks up the cat and throws her, no mater how far, she always lands on her feet... ok, all but one time.....
         
He has a fascination in watching things whirl down the toilet....

"Honey, we ran out of napkins."

"No we didn't, I just bought some at Costco."

"Well, I don't see any."

"Ok, so grab some paper towels while I go looking."

"Moooomyyyy! the toilet is stuffed again... and it's flooding!!!"

"Ok, for the millionth time, you only need two or three squares to wipe at a time! Now let me see whaaaat.....WHO THE HECK?!?! HONEY!!!!"

"I'm coming, I'm coming....(more muttering under his breath....) What the?!?! Ok, nobody move. Honey, make sure the kids don't come into the kitchen I don't need anyone running in here doing the rain dance and sliding in toilet water..." and sure enough like clock work...

"STOOOOP!! Out! Don't move!" ....It's amazing to see how many time a day we give our children mixed messages....

"But mommy I need the bathroom!"

"Well it's out of commission right now, please use the one upstairs."

"But I have to go noooooooowww! I'm going to have an accident!"

"Trust me, your accident down here is going to be a lot easier to clean up then that one over there."

30 min later, a lot of towels and a spanking clean and sanitized kitchen floor later, things were looking pretty good.

"Honey, do you think that roll of toilet paper that was in toilet was the pack of napkins from Costco?..."

         Well, it turned out that it was more then just a Costco pack of napkins that went "down" the toilet. When my husband sent the snake down, it hit something hard, so fixing it right away was going to have to wait. The next morning we came down to a lot more then just brown in the toilet. It was almost beginning to look pretty. Toy cars, beads and the entire contents of our charity box.... When my brother saw it he said, "That's some expensive crap you have there." Now before you think, ummmm people, what about a child lock for the toilet lid? We had 3. They all broke. Let me know when BabiesRus makes one out of titanium.

         I had mentioned Sruly loves to see things fly. When he was younger he would chase those huge bees that look like they came out of Jumanji. I can officially tell you they don't sting. He has chased hundreds of them and they almost seem to like him. I used to cross the street when I saw them... Well, ok, I still do unless I have Sruly with me.

         One morning at 6am, the boys came running into our room and said, "Mommy, Tatty (Daddy), there is glass everywhere! All over the kitchen floor! And staples! But don't worry, we locked up Samson and put Coco in the basement!"

"And I assume you are wearing shoes, right????"  (Of course not.)

         This time the mess took a good hour and a half to clean up, God bless my husband. I think Sruly wanted to see how light bulbs bounce....or not. And how did he reach the staples? Well, let's just say Sruly has turned into quite the acrobat.

         And now, back to the iguana. Sruly discovered a few weeks ago that the best way to see things fly is from the third floor window. I was in our bedroom doing laundry the first time I heard the strange noise. At first I thought it was a squirrel trying to get through the window. I slowly crept up to the window expecting to come face to face with a crazy wild squirrel. I braced myself, slowly reached for the shade and brushed it away as fast as I could. With all of the noise I was imagining the squirrel to be half human, but no. What was this? Marbles falling from somewhere? What?? My mind went blank trying to find an explanation for this. I think the accurate word that went through my mind was "HUH?" And then I heard Sruly's footsteps, running across the room to see what else would look neat flying though the sky, rolling down our roof and then on to the ground below.

"Srulllyyyyy!" I yelled. He came running down the stairs. The kids went out to clean up the yard. "Mommy, this is fun! It's kind of like a scavenger hunnnnn...hey! Coco is one the roof!!! Noooo!"

"Don't worry, I don't think she'll jump." ...although she did looked like she was trying to. "Don't even think about it!" I told my son as he ran inside, but before I could blink he was on the roof, coaxing her back into the house.

           As Sruly ran by I caught a glimpse of his eyes. They looked unsettled. I felt bad. It's so easy to feel guilty. I know it's impossible to always have things just so. To always make sure the house is neat and orderly, that everything is put away, that the house is visually calm for him, that I have relaxing music playing in the background and a bin of sensory toys put aside for him like I used to have.... I wish I could do it all. I wish I could do it all, all the time. I love him with all my heart and I guess it just hurts to see him this way, but all I can do for him now is love him and not freak out myself. ....Although, when everything seems to have gone a little nuts, lately I have been feeling like all you can do is just smile. Well G-d certainly has a sense of humor. So what that he decided the toys needed a special coat of honey for that extra sensory experience, or that the dish soap became the new a la mode. I actually think that the Iguana looks cute on the roof!

L'chaim! 
                                     Below, coco and Ms Iguana. Otherwise affectionately known as Liz.
                                                        

   

Mommy Brain

         This was the second week I was still telling myself not to forget to make our daughter's 8 week well child check up with our family Dr. This time, however, I finally remembered at the same time when I had a moment of peace and quiet. The kids were done with their homeschooling work, (or at least they thought so), there was no fighting, crying...

"I had better grab this moment before I get caught up in something and forget again," I thought.

I went tiptoeing into the kitchen, why? I don't know, because nobody was sleeping. I guess I was afraid that one false move would cause... ok, well, I will spare you.... I dialed the number and heard the phone begin to ring.

The moment the secretary picked up the phone, my heart did a little flip flop. I realized I had just dialed with out first looking up my daughter's birth date! (This happened before with one of my other kids. The secretary asked for my child's birth date and for the life of me I couldn't remember, to which she answered, "Honey, sooner or later you are going to have to remember!" But too late now, I couldn't just hang up...

So I started to pray, "Please don't ask me my daughter's birth date, please don't ask me my daughter's birth date, please don't ask me my daughter's birth date...."

"How may I help you?" she asked.

My mind was racing with trying to figure out her birth day!

"I am calling to schedule an 8 week well child check for my baby girl." .....what was her birthday?!?! I knew she was going to ask me any moment now, and it still didn't come to me! I can't believe I am doing this again! Please don't ask, please don't ask, please don't ask, please don't ask.....

"And what is your child's..." Ok, I thought, here it comes... For goodness sake, what day did I give birth on?!?!

And then she said, "name?"

Completely dumbfounded I said, " What? Name? Oh. Oh man, I can't believe my brain is blanking on me. Ummmm. Uhhhh." I was looking at my daughter feeling so totally stupid and trying to fill in the silence on the phone that I was clearly suppost to fill with an answer but I couldn't! I couldn't believe this! Her name?? Yes! I know her name! I felt I needed to keep talking or the silence would make things worse. And there was no way I was going to hang up the phone, call my husband or go look it up and then call her back!!! There are just no words to describe that! So I just kept talking hoping that eventually it would come to me...

"Ummm, sorry, I am having a complete brain fry right now. Ummm, hang on... Ahhhhh! I... ummm. Sorry!! I can't believe I am blanking on this. So sorry, my brain is totally not working! Ummmm, sorry!! I have a few kids... (I can't believe that came out of my mouth as an excuse!)Ummm,...Oh my goodness!!! Hang on a sec it will come to me!" I was starting to sweat a little and totally not believing myself! Hellooooo! What was her name?!?!? Come on brain!!! Work already!!

And then it came to me.
I felt a split moment of relief and said, "Ahuvah!" Thank G-d it came to me!!!... but, oh no! Please don't ask me how to spell it, please don't ask me how to spell it, please don't ask me how to spell it.....

This is ridiculous! I began frantically scanning the kitchen for a pencil and paper to write her name down so I could tell her the spelling....She is totally going to think I am a nut! Why is my brain not working?! I can't believe I am going through this right now!

"Is Oct 24th ok?" she asked.

Whhhheeeeeeewwww, she didn't ask! Thank G-d, she didn't ask.

"Yes," I answered. "That's fine."

The Most Beautiful Roses

     There are days, weeks and even months that go by that I know I have not made a conscious effort to stop and smell the roses. Why do we do that? We get caught up in the daily grind of keeping house, raising a family, being a wife and mother, juggling appointments and for many of us, keeping up with all of the necessary therapies and Dr visits. Yes, there are days that go by and I know I am not taking the time to just stop for a moment and soak it all in, the good, the not so good... but all to often it seems easier to just keep on going. Getting off the treadmill just seems like too much trouble. I have come to realize after a few years since our son's diagnosis that the winter months are the more difficult months for me and the summer time... well, who can ignore the beautiful sunshine! Truly, our son has taught me so much. I thank G-d for every beautiful day that we have, and along the way I am learning to thank G-d for everything else in-between. The obvious blessings, the difficulties and challenges, the ups and the downs.... I find it is much easier to thank G-d when things are going well, but to find the strength to thank G-d when things are not going so well, that is still so difficult for me. In the moment, when Sruly was a toddler and really going through a rough time, I think I did much more complaining to G-d then thanking. In fact, I am embarrassed to say I cannot remember if I took the time to thank G-d at all!

      All of our children have taught me so much and continue to teach me more then I teach them. I think kids with special needs teach the world so much more then what we can teach them. Sure, we teach them academics, proper behavior, life skills to name a few, but in return we get so much more and for this I often feel quite humble around kids with special needs. There is so much that they put up with, often in silence when we would complain. There are so many petty things that the rest of us get hung up on when it probably doesn't even cross the minds of many people with special needs. I have come to strongly feel that they truly are on a higher spiritual level then the rest of us, even if they may not think so! I am not so familiar with with all of the different types of special needs out there but as a parent I am somewhat familiar with the world of Autism. I have learned that among other strengths, people with autism are the epitome of truthfulness and honesty. How different the world would be if all of us were blessed with that strength!

      On smelling the roses... Today, after a therapy and Dr apt, my husband and I took the luxury of going food shopping with our three-year-old. We did not rush and took the liberty to take things slow, soak in the moment and just enjoy each others company. It felt so good. Where did we go? Target and Whole Foods, but it really felt like a mini vacation. I don't think I can explain how good it felt without sounding like I went off the deep end. Yes I was happy, but I felt the happiness. The world wasn't rushing and I think I actually got off the treadmill. I took the time to admire my husband. I took the time to admire our daughter. Perhaps it was simply taking a day off and not rushing, being a little carefree and lighthearted, deciding to just let G-d handle the day and not fight Him.... I don't know, but to take a couple of hours and not worry so much about our constant responsibilities and time pressures gave me the opportunity to stop. We gave our three-year-old a child's shopping cart and enjoyed watching her take on something new. She was in awe at filling up her cart and pushing it around the store. I must say she took her job very seriously. Born with low muscle tone, she got a bit of a late start in walking and gaining her independence, but every moment to her is a joy. She began walking on her own about 7 months ago and is simply overjoyed to walk with us, play with friends and siblings, but most of all she loves to help. Having her own shopping cart and helping us with food shopping seemed to mean the world to her, and consequently to me as well. It was beautiful. She shopped and filled up her cart while I was laughing with pure joy watching her and admiring at how far she has come. How far all of us have come for that matter....

- Matana

So yes, today I can say I stopped to smell the roses. The most beautiful roses.

  

On advocating

         I believe that G-d gives you children according to how you, as a person needs to grow. When we began having children, I always felt like I would be a horrible advocate for them, and would often kick myself for not standing up a little stronger. Then we were blessed with Sruly. Children with special needs require everything that typical kids need, but very often on a greater level. G-d really knew what he was doing when he blessed us with Sruly and his special needs. Every parent with kids with special needs has to advocate for their children, and if they don't know how, well, hold on to G-d's hand and He will show you.

      When our son was in pre-school we were blessed to find an awesome program for him with such incredible teachers and therapists that I will forever be grateful for. These teachers, part of the public school program, taught, not only the children with special needs but also the parents. They took us by the hand and helped us through accepting the diagnosis, understanding sensory needs, conducted parent support groups, provided classes for parents on understanding and handling different behaviors, toileting, sensory, visual supports and much more. Despite everything I learned, our son learned even more. Than he graduated to kindergarten. We looked at just 2 public schools and applied for the one that happen to be closer to our home. I was a little unsure as I learned that they did not do ABA, among other things but everyone was so nice, and to be honest, I didn't know of any other options at the time. So he began kindergarten in his new public school.

      When our son was in pre-school he was there for just a few hours a day, then came home and worked with his TSS. In the beginning the most important thing he needed was to come out of his world and experience friendship and love. Little by little his TSS and BSC added some great programming as well as incorporated the skills he was learning in school and brought them home to create consistency and provide a more wholesome learning experience. After a couple of years our TSS began a family of her own and needed to leave the agency. We decided to switch agencies and were blessed, yet again, to find another great team. We felt that now he was ready for ABA and a more intensive program. There were many specific skills which his new TSS and BSC addressed and they also took a lot of data. When our son began a full day of kindergarten we noticed that he was forgetting skills and not developing at the pace that he was. The school was very focused on maintaining appropriate behavior, socialization and having Sruly spend as much time as possible in a typical classroom surrounded by typical kids. Being in a typical classroom around typical kids was not my goal. I wanted much more for him.

      Around that time we heard of a private school just a short distance from our house that was a school just for kids on the spectrum.  Around early November we took our first tour  and were so impressed by what we saw. The director was genuinely warm and gave us her time to give us a thorough tour and answer all of our questions. My last question to her on our way out was, "How difficult is it to get in?"

      "Which district are you in?" she asked.  I told her, and she answered, "They can be pretty difficult, you are going to have to put up a fight." With my husband, dear friends and G-d holding my hand, I did.

            As soon as we let Sruly's public school know why we wanted to switch him a a private school, they asked us to check out some other public schools first. One in particular stands out in my mind. It was a large school just for kids with special needs. As soon as we walked in I was overwhelmed by the size and how many students they had. It almost seemed more like a money making business than a school. They had two autism classrooms, one with the ABA approach. Someone gave us a tour and brought us into the classrooms. Immediately I did not like the teacher, for reasons I will not explain here. The staff to student ratio was poor. The classroom set up was cold and very institutionalized. I had a tall order. In addition to a classroom that provided the appropriate therapies I was also looking for an excess amount of visual supports and a classroom that felt very warm and homey. With kids on the spectrum, everything matters from the colors to the lighting. I was looking for warm colors, soft lighting and teachers and therapist who would compliment that environment. (And again, as well as the appropriate therapies.) This was certainly not the school. When we were done in the classrooms, our tour guide showed us the time out room, or the "cool down" room for kids who would tantrum so much and needed to be placed in there. The room was the size of a small walk in closet with nothing in it but wall to wall padding. The idea scared me. On our way out we got to see their sensory room, which was not impressive, and we got a quick hi and hello from the principal who was clearly busy trying to keep law and order in such a large and noisy facility.

     I was so grateful it was a sunny and beautiful day. As soon as we got outside I tried to let the warmth of the sun and the beautiful day embrace me, but I was still near tears at the thought of our son going to a school like this. I turned to look at our BSC who had come along and get her opinion as well. She took one look at me and said, "Don't worry, I am not impressed either. You don't have to send him here." The pubic school that our son was currently in needed to tell the private school that we chose, to come and observe our son and begin the necessary motions so he can attend.... but they (our son's current public school), were dragging their feet. We contacted an educational advocate who encouraged us to set a date for a meeting with the public school and their staff and explain why we want our son in the private school that we chose. The first meeting we had did not address the point. There was beating around the bush, and parent pleasing "data" collected to show us how he has been "improving" since we first mentioned our plans. We set a date for a second meeting.

      Before the second meeting took place, I spoke with Sruly's pre-school teacher. She told me she had gotten a phone call from one of the people in the public school's board of ED. The woman had asked her if she thought (since she had taught Sruly for a few years and knew him quite well), if he would do well in the private school that we were looking to send him. Sruly's teacher said yes. Next I was in contact with our Educational Advocate who went over our rights as a parent, what to expect if things went "south" at the next meeting (we had to be prepared to take our case to court), the data that we needed to bring and what we could expect from him as an Educational Advocate. He knew the laws well and that was his job. A few weeks before our second and final meeting I spoke with a dear friend. I needed to vent. I explained what was going on, to which she answered she'll see what she can do. I wasn't so sure but she explained her husband had a lot of connections. A few days later she told me her husband had spoken to someone on the public school's board of ED and briefly explained to her what we were trying to do. (I was beginning to think maybe we were crazy for entertaining this whole idea!) She answered that if this is what we felt would be the best choice for our son, that we need to be firm, stick to our guns and not let them push us around. We would get it. (She also asked to remain anonymous in fear of her job.) My friend told us to do one more thing. We needed to write a letter to our state representative. She gave me his e-mail address and I immediately began writing a letter.

      Here is a copy of the letter. If you are a parent or caregiver and would like to copy this or part of this letter to help advocate for your child, please feel free to do so, I ask that you just e-mail me first. Also, please note that I have kept the names of the schools anonymous to protect their privacy.

       We are parents of a 6 year old little boy with autism. Our son is currently in kindergarten and attends MP public school. He is part of the autistic support class which they offer there. MP does not offer an ABA (Applied Behavior Analysis)  program in their classroom, a type of therapy which is very popular and very effective in helping kids with autism learn and thrive. We have collected data throughout this past school year indicating that academically he is not thriving as he has in the past and is forgetting skills which he previously learned and mastered in an ABA environment. We have looked into three other schools (with the help of our son's Behavior Specialist), CP which is part of the public schools, and a private school at.... We found that CP does a "modified ABA" program, they do not follow the standard protocol, where as the private school follows it to the tee. There are other issues as well, such as CP does not push visual supports, which our son needs and has proven to thrive beautifully with, and the private school literally breaths visual supports and applies them at every opportunity possible. When our son is in an environment with a lot of visual supports his verbal and non verbal communication really thrives. The private school makes sure the kids with autism get a lot of sensory input throughout the day, whereas with CP it is secondary consideration. Again, sensory input throughout the day is so important in helping our son be calmer, more focused and ready to learn. The private school recognizes the importance of this which is why they are so diligent in providing it throughout the day and not just when kids seem to need it. The private school can really provide so much more for our son and they have an educational plan that our son can not only thrive in, but can truly reach his full potential with. The last issue for us is the distance of the schools from our home. CP will be about a 45 min bus ride and the private school is about a 25-30 min walk or about a 6 min car ride. The distance of CP will also be challenging for our son regarding potty training (Again, he is 6 going on 7 and we are actively working on this skill). The other challenge with the distance of CP is that I (mom) only drive locally as I am not a confident driver and can not merge in heavy traffic or on highways very well. I need to be able to visit his classroom often to be a part of his education and learn from his teachers so I can incorporate as many new skills and teaching techniques as possible at home. 

         The problem we are now facing is that the Public Schools are seemingly intent on keeping him in their system regardless of whether or not this is the absolute best choice for our son needs. We have spent hours interviewing the schools, their teachers and staff and have found that the private school will be able to guide and help our son fulfill his true potential in every way. We are asking for help in influencing the Public Schools to allow him to attend the private school which has been deemed most suitable for his educational needs by us and his team of therapists who work with him outside of the school. Thank you in advance.

Sincerely,

A and  B

p.s. We are scheduled to meet at his current public school this Mon, April 26th at 12:30 with a representative of the Public Schools, D.G. If you feel you can be of assistance to us in this matter please feel free to attend. 

     We later heard that yes, he read it and let the public school know that he read it and was watching our case. The day of the meeting came. We explained as diplomatically as possible (again), why we wanted a different school and why the other public school they chose for us was not an option. They began asking us to take a look at other public schools in the surrounding areas, all at least a 45-70 min bus ride for our son and again, not nearly as good as a school. (In total we had looked into 3 other schools.) I was beginning to doubt my ability to continue to keep it together. My stomach was in knots and I was getting close to yelling with all of the beating around the bush. The educational advocate was quiet, focused, listening and taking notes, which I knew meant he was confident with how things were going so far, but for my nerves I needed this whole thing to end.

      With a prayer to G-d to help me stay calm and not fall apart, I looked around the room and said said as calmly as I could, "We have a lawyer and are prepared to take this to Due Process."

      The representative from the public school said, "In all of my years on the job I have not had a case go to Due Process and as I am nearing retirement I am not about to let this be the first."

      The meeting was soon ended in the agreement that yes, our son could go to the private school. Of course we didn't know if there was still space and the director of the private school needed to first observe him and decide if the fit would be a good one. In the end, yes, they welcomed our son with open arms and have been incredible for both our son as well as our family. It has truly been a blessing.

      On our way out of the building I was going over the meeting in my head, thinking of how I could have said this and should have said that etc, when our Educational Advocate came over to say good bye.

      "By the way," he said, "you did a great job. I just sat there taking notes and didn't have to say anything. Usually I need to jump in and advocate for the parents. Best wishes and good luck."

I thank all of our friends, family and most of all my husband who stood by my side the whole way.