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.

 

G-d is watching over you.

      They say that there are melachim (angels), watching over our children. I am convinced that G-d himself watches over the ones with special needs. I remember one morning when Sruly was about two and a half and I was about seven or eight months pregnant. I was still at a stage where I was completely denying and even fighting the "possibility" that our son may have autism. (This was before we had gone to get a second opinion, which still took me a long time to accept.) I was cleaning up our front porch while keeping only half an eye on Sruly since the gate was up. I was daydreaming a little, enjoying the weather while organizing our home and did not hear Sruly open the gate. I had no idea he knew how to do that. These kids can pull a Houdini move when you least expect it.

     To this day he can still baffle me with the knowledge that he has but doesn't let on. Perhaps it is easier for him to sometimes just play dumb, or maybe he is just socially unsure of how to share with us what he has learned. Maybe he is simply content just watching, learning and quietly taking it all in at a comfortable pace and doesn't feel the need like the rest of us do to share when we have learned something new. I don't know, but when he does surprise me I usually feel like an idiot for not believing in him, all while celebrating the new skill he has just mastered. He is going to be in trouble when he learns to communicate a little bit better. I am going to bombard him with questions as to what exactly is going on in that smart little brain of his! But for now things will remain a mystery...just for now.

      Before I continue I just want to explain that sometimes kids on the spectrum view the sidewalk, the neighbor's front lawn and the street as one big running / play area that is open to all without boundaries or dangers. Thankfully, as they get older and become more aware and in touch with their surroundings, they start to realize that the sidewalk has a clear beginning and end. Front lawns and back yards prove to be just that, and the street clearly becomes a place where cars and not people frequent.... well usually! But when Sruly was younger he was a bolter and a runner.

      Well, a few seconds after he opened the gate I turned around and quickly realized that he was gone. I ran to the front door, saw that he wasn't on the first floor and yelled for my husband. I scanned our quiet street and saw Sruly running at full speed ahead down our street towards a very busy street. My husband, understanding that the frantic pitch in my voice meant something serious, came flying down the stairs and out the door. In mid stride I pointed and yelled, "Sruly!" I knew there was no way I could reach him in time and wasn't so sure my husband would either. He jumped over the side of our porch and ran as fast as he could down the street after Sruly, but we quickly realized we needed a miracle. Apparently my husband wasn't the only one who was trying to make the hundred meter dash. A 220 pound Italian contractor had seen the events unfolding, heard my yell, put two and two together and decided to join the chase. At that very moment a car came quickly around the corner of our street, drove right up to Sruly and stopped. The driver jumped out of his car and grabbed Sruly. He picked him up and the two of them slowly began walking up our street back to our house and it was then that my husband caught up to them. Another stride or two and Sruly would have found himself in the middle of a very busy street and the rest I don't even want to think about about. My husband, Mr Levin and Sruly reached our porch where I was still standing, completely numb. I was still registering what had happened.

      Mr Levin looked at us and said, "You know, I never drive down this street at this time, I just happened to be late for work."

Tears came to my eyes as I reached out to hold Sruly.

      Thank you G-d.

                                                                 

Trip to the Library

     Well, I think I had a moment of insanity when I decided to take all of the kids to the library. How hard could it be? I take them all to the zoo. And I am sure I have taken them all to the library by myself before, I just can't remember when. So I got my three year old dressed, or rather she got herself dressed and I re-dressed her. She picked out an outfit fit for a three year old with glorious colors and designs carefully chosen making sure nothing matched... well at least we agreed on matching boots (in 65 degree weather), and nothing was inside out anymore. And out the door we went! Well, ok, it wasn't that easy but it did take us about 15 min to get out the door which was pretty impressive timing if I may say so myself. I just hoped my three year old would keep her jacket on so she looked somewhat put together and cared for.

     As soon as we got there my eldest returned his books and the rest of us went over to the kids section. I think I turned around for 0.01 of a second when my three year old took off running down the hall with about 25 adults looking on with interest as to whom this child belonged to, and how long it would take the parent to realize one was on the loose. In my defense, I think three-year-olds put Olympic athletes to shame. I knew my 9-year-old could sprint faster than me, albeit I can run pretty fast but I saw that Sruly already made himself at home so I quickly recruited my son to intercept his sister before she reached the elevators. Touchdown! Even the security guard seemed amused. Or so I thought. He was probably just relieved that someone had come to claim the toddler and bring law and order back to his library... or so he thought. My son, proud of his accomplishment at racing his sister to the elevator and winning even though she had a good few seconds on him, carried her back screaming and protesting. Finally all together again, we headed towards the children's section.

     We must have come in kind of breathless with somewhat of a run because when we suddenly came to a stop, collecting ourselves and me taking another head count, I awkwardly felt about 15 sets of eyes on us. Now, I usually try to avoid the computers and only allow my kids to go to the books - being the earthy crunchy parent that I can be, but this time I welcomed anything that would keep at least two in one place. By the time I finished scanning the room, making sure everyone was safe, I lost one already. Oh, wait, there he was. Sruly was defiantly making himself at home. I took down a book off of the shelf and called him over to come and sit down with me to look at the book. He came over, sat down, looked at the first few pages and then looked at me with a look that said, "You have got to be kidding me Ma! We both know that I can identify everything in these pages and then some, and this is just something to keep me busy." Then he looked at me in the eyes and I knew he read my face. I was in trouble now. I smile spread across his face. He knew exactly what he had to do to get a rise out of me. Here we go I thought. I had prayed for so long for him to come out of his own little world and become aware of his surroundings and do things that typical children do and yes, I can confidently say he knows exactly what is going on, more than what he lets on I might add, and YES, he was definitely acting typical!!! It's a good thing he is cute....

      So while I was busy with Sruly, I kept a close eye on my three year old who made it her mission to read all of the books she could get her hands on. And yes, my others were still at the computer for all of you who began to worry about them. I half hoped, alright, I really hoped I would find another mom with a child with special needs but all I saw were what looked like to me a room full of first time parents all trim and fit, looking like they had just come from an awesome Pilates class, hovering over their perfectly dressed and well behaved children who probably never saw junk food in their life and begged for Humus for dessert.

      Well, all in all I think it was a pretty good trip. This time we didn't have any mishaps in the bathroom, we didn't wipe out an entire shelf, ok last time it was two shelves... no one needed a change of clothes, we only had one short melt down and I didn't have to hand out any bribery... which was a good thing because the "perfect parents" probably would have fainted and anyway I forgot to bring my little stash. So yes, I felt it was a success, but I think I will stick to the zoo...  

                                                     

On Finding Love Again

     When we were first learning our son may have autism, I connected with another woman in our community who also has a son with autism. The first time I called Eve I was overwhelmed with her warmth, but even more so with her openness. I was still unwilling to talk about autism, even more so be open about it. I was still hiding and hoping. Hoping it would go away, hoping they would realize it was a miss diagnosis and like many parents,  I even blamed myself for his autism. She wasted no time in inviting us over to her home so we could talk a little. On a Saturday afternoon, after our Shabbat meal, my husband and I walked over with Sruly.

     As we were walking I was silently praying that I wouldn't start crying. I was afraid that if I had to start talking about Sruly I would just fall apart. Things were still so fresh and fragile for me. We knocked, and Eve immediately came to the door. She was truly excited to see us. Right away Eve called her son over to come and meet us. I must say, as soon as her little 9 year old son walked into the room I just fell in love with him. He was beautiful, polite, honest and charmingly quirky. We said our hellos, made some small talk and than he asked to go back to doing his puzzle. Eve had to correct him a couple of times until he worded his sentence correctly, all the while making sure he was looking into her eyes as he spoke, but he got it! He said what he wanted with a smile on his face and than went back to his puzzle. I was simply amazed! Eve was so excited about her son, about who he was and how far he had come. She was truly excited and was clearly glowing with pride!

     At that stage in my life I didn't know if it would be possible for me to feel like that. How had she reached that point? Did she always feel like that? Was she always so confident? Did she ever go through denial? Did she at any time feel like I was feeling? I felt distant from our son and hurt. Distant because I didn't feel like I could connect with him. I didn't understand him. How could I? We didn't understand each other's languages. Most of the time he seemed to be in his own little world. I didn't know how to get into his world and he didn't seem to understand ours. I was hurt by his lack of physical affection and felt horribly guilty about this. Wasn't a mother supposed to reach out lovingly towards her children? Wasn't a mother supposed to understand her children, know how to connect with them and give them unconditional love???...and he was just a little child! Here I was, the adult, who I felt was most certainly not acting like an adult. It was childish that I felt hurt but I just couldn't shake off that feeling. It was painful to admit, but I felt I needed his love and outreach in order to love him. Up until then I felt I was a pretty good parent, but feeling like I needed some love from my child in order for me to be able to love and connect with him in return was simply an outrageous, painful, humiliating and a very humbling feeling.

     Eve took us upstairs to see his therapy room. She explained to me that most families have therapies set up in the child's bedroom, living room or dining room, but they were lucky enough to have a separate room in the house for his therapies. The whole idea of having an area in the home set aside for therapy was new to me. She seemed so organized and calm about everything. Just the idea of having a part of our home set aside for therapy and opening our home to therapists was overwhelming! She pointed out some safety precautions they took to make sure their son stayed safe within their home. She explained to me that many of these children were extremely curious and did not have a sense of danger.I didn't fully understand what that meant. Part of me thought, "Oh, we will never have to do that for Sruly!" And the other part of me just felt more and more distant from this child. They put up child locks on the windows, a gate in his bedroom doorway so he wouldn't wander around the house during the night time, a special lock on the doors leading to the outside and a few other things. She showed us a net swing they had gotten their son for sensory input. Sruly tried it out and was immediately calm and quiet. He loved it. It was still difficult for me to engage him and I didn't feel like I could share in his happiness, but I felt his calmness when he relaxed in the swing and this was reassuring to me. If I felt peace in my heart when he was comforted then surely that must mean I love him.

     Looking back, the turmoil of guilt a parent can put themselves through is pretty unbelievable. And even when another parent or therapist looks at you in the eye and tells you that no, this is not your fault,.... when you are in the heat of it all you somehow believe otherwise. It's interesting how distant, yet connected one can sometimes feel. There was so much that I missed and so much that was new, uncertain and scary. I just wanted to bond with him. I wanted to share in his excitement, pride and enthusiasm at accomplishing new things. I wanted to share in his fear, his worry and curiosity about life. I was so focused on him being seemingly emotionally detached and distant that I was completely missing the path on how to get there. My heart ached to bond with him again, to communicate, to share joy and happiness... To bond with the baby that cooed when I picked him up, that smiled when we made funny faces and did what parents to best; act ridiculous.

      In the weeks and months that followed, i did what most parents do. I read. I read about about diet, supplements and therapies. I couldn't stop reading. It was my way of gaining some sort of control, and of course, still hoping to "fix it". The two main types of therapies that caught my eye were "Floor Time" and "ABA". I loved what both had to offer, but at that time, Floortime was what I felt I needed most. I learned to talk in a sing song voice, to act like a kid again, get down on the floor and just play! It's funny how sometimes adults need to learn how to act like a kid again. I learned how to be animated and express excitement during our play time. I sang, had music going and slowly discovered his favorite videos, all song and dance based. He loved song and dance. He loved music and movement. Together we would watch his favorite music videos, dance to the music and slowly, ever so slowly our worlds began to connect. He looked at me with curiosity and a smile when I spoke to him in a sing-song voice and his face lit up when I sang his favorite songs. One of the videos he loved was the Baby Einstein series. The puppets would make animated and lively noises, the music was calming and the scenes were not overly stimulating, he could follow them and seemed to understand what was going on. This was exciting for me to see in him. I had a brainstorm of trying to find puppets similar to the those that were on Baby Einstein. I found some cute animal puppets and would use them to play together with Sruly. I would have the puppets tickle him and we would just act silly. He loved it! I am not sure who it was more therapeutic for, Sruly or myself! One day I noticed a smile spread across Sruly's face during a particular scene. The puppets were acting silly. Slowly his smile grew until he began to laugh. Soon he was laughing so hard he fell off his chair! The scene ended and Sruly became quiet again. Wanting to see if he was truly laughing at the puppets being silly, I re-played the scene. This time he began laughing as soon as they started. He was laughing so hard he couldn't stand up straight! A light bulb went off in my head. I now had my foot in the door. I think I must have re-played that scene about 20 times.

                                            

      One of my siblings, as a toddler, was not too fond of snuggling or being held for longer that necessary.  My parents, knowing that all children need physical love and affection tried to figure out how to make sure this child got it even though he seemed to back away from it. Finally my father came up with an idea that only a father can think of. Rough housing! Every evening after my father came home from work, he would get on the floor with my little brother and rough house with him. My father would embrace him in huge bare hugs and the two of them would roll around on the floor and "tackle" each other. Looking back made me realize two things. One, the importance of outreach and two, that physical touch doesn't have to be snuggling and typical hugs. Thus began our nightly family "dance parties" with music and rough housing. Every time Sruly would smile my heart sang. Evey time he would look at us in the eyes, we would celebrate and praise him. He would bask in our praise and drink up our love. Love. I was learning to love again, but this time, it was a deeper kind of love.

I was learning and my soul was singing.

I was finding love again.

-Matana B

                                                                 

The Road to Acceptance - on Autism

     It was our holiday of Sukkot. We had a beautiful Fall day to take the kids to the zoo. The sky looked like something out of a photography magazine. It was one of those days where you stepped outside, took a deep breath and let the fresh air just flow through your body. Hopefully, I thought, this appointment won't take too long and we will still be able to spend time together as a family and go to the zoo. My husband and I, together with our 1-and-a-half year old son, were on our way to the Child Development Unit at Children's Hospital. My thoughts drifted back to Sruly. Why wasn't he talking yet? And there was something else, but I couldn't quite put my finger on it. At his 14 month well-child check up, he appeared to be a typical, sweet, healthy little boy. He had reached all of his milestones on time. physically he had no delays. he smiled and giggled when we acted silly, although I did notice that he didn't respond quite the same as his other brothers did, but i shrugged it off to the fact that we had a very busy home. I didn't spend the same amount of time with him that I did with his other brothers, and every child is different.

"Do you have any concerns?" The pediatrician asked us in his usual fatherly tone.

"Yes," I said, "he's not talking!"

The Dr didn't look too concerned. "Does he have any words?" He asked.

"No! Nothing! Not a single word!"

"Well, I wouldn't be too concerned," he answered. "He has reached the rest of his milestones on time, he's babbling and everything else seems to be normal. Usually if there is a problem, than crawling, walking of something else would be delayed as well and he's right on target. He seems to be just a late bloomer. I wouldn't worry right now."

     I hoped he was right. We both knew I was, and still am a big worrier, so I tried my best to let his words reassure me, but I still left his office feeling that something was not quite right. Sometime later, I couldn't take it any more so we found ourselves in the speech and language unit in Children's Hospital. Here, I thought, someone will finally be able to help us and explain to us why our son isn't talking yet, than we can hopefully fix it and get him to start talking! We walked into the speech pathologists office. I smiled. I wanted to become quick friends with this woman who would soon tell us what the problem was and how to fix it. She responded with an indifferent and serious look.

"What is your main concern about your son?" she asked us.

"Well, he's not talking. He doesn't say anything." I answered

"Will he say mama or dada, or maybe something that resembles that?"

"No!" I said excitedly.

     She raised an eyebrow and took out a questionnaire from a large textbook as if to say, 'well, I know which information we have to go through now.' I was relieved watching her. She really seemed to know where to look and what the problem was. Then she started asking me questions that didn't seem to have anything to do with speech. I became confused and flustered. I found I couldn't give her straight answers.

"Does your son point? Does your son do imaginary play? Does he imitate?"

"Well, no," I explained. "Things are so crazy right now and I haven't had a chance to sit down and teach him those things, but I'm sure he could." Suddenly I felt like an awful mother. What kind of mother doesn't have time for her child, so much so that now he is not doing these basic things?? But what does this have to do with speech?

"He's not talking, he's just not talking! There is nothing else wrong with my son!" I wanted to yell. But her questions were making me uneasy. I found myself defending our son.

"Things are a little stressful right now, the kids are so close together, and his personality is very laid back. He's really happy just doing his own thing," I said.

"Is he aware of his surroundings?"

"Sure," I said, "but he's happy being in his own world. He sees what we are doing, he watches us, but again, he's just happy doing his own thing." Than she sat on the floor next to Sruly and brought out a few toys. She put a tea set in front of him and pretended to drink from a cup and then pretended to have a doll drink from a cup. I thought this was a little advanced for him, and that if I sat down to teach him he could probably catch on. Sruly looked over at the cups, than turned away looking uninterested. I wasn't even sure if he understood what she was doing.

"You see," I explained, "he's aware of his surroundings, he is just happy doing his own thing." But she started to make some notes in her book. I realized that he was supposed to imitated her and join in her imaginary play.

"He could do it if  I taught him," I told her. "I just never sat down to teach him those things." She looked up at me without smiling, waited until I was done, and then finished writing. Ok, she seemed to take that into consideration.

     An hour later our appointment ended. I was emotionally drained. She gave us some numbers and people to call. One was for the Alliance for Infants and Toddlers "to get services." The other was the number to the Child Development Unit in Children's Hospital "to find out why he is not talking." When she said that, she made it sound like something was seriously wrong. Nothing is wrong, I told myself. He is a normal, happy kid. We just have to figure out why he's not talking and fix it.... and I need to spend more time with him.

"Who do I call first?" I asked her.

"Well, you need to contact both of them but make an appointment with Children's as soon as possible."

     So there we were on this beautiful Fall day looking for signs for the Child Development Unit, but all we saw was a plaque with the words: Autism and Developmental Disorders. Well, that's not us, I thought. I asked my husband to ask someone for directions. He asked the first person we saw coming down the hallway.

"Go to the main elevator, up to floor two and when you walk out, make an immediate left and you'll be right there."

We walked over to the main elevator and pressed the button. As we were waiting for the elevator, I noticed the sign. "Autism Pervasive Developmental Disorders and Downs Syndrome, 2nd Floor."

"Is this where they were sending us?" I thought. "There is a mistake, this is not going to help us!"

     We stepped out of the elevator and found we were following the signs for Autism and PDD. I didn't know then what PDD was, but I did know that our son did not have autism and this was not the right place for us. Thirty minutes later, I was finally settled with Sruly in a small office, waiting for the psychologist. This is not where we need to be, I thought. This is a waste of time. Maybe we were just using this office for space. I'm sure they realize we are not using this office for autism. Our son definitely does not have that!

     There was a knock on the door and the psychologist walked in. She smiled. I smiled back, a little tense. "So," she said, "I see you have your hands full. A three and a half year old, a two and a half year old and this little guy,...and another one on the way, I see. How far along are you?"

"About five months," I said.

     We made some small talk about my family and kids. This calmed me down a little. I felt she was getting a good picture of what was going on and there were finally some  questions I could give straight answers to. Then we started talking about Sruly and our concerns for him. I was beginning to think that maybe I had more than just one concern for him. The next hour and 15  minutes was very much like our appointment with the speech pathologist, but more intense. At the end of our appointment she asked me a question which made me come to the conclusion that we were just waisting our time. "Have you ever thought your son has autism?"

"What? No!" I answered firmly. "I do not think our son has autism."

She smiled, wrote down a few things in her notes, than looked up at me and said, "I think your son has autism."

"Well, I don't," I said in a cool tone.

     I was surprised, angry and hurt. Surprised at her diagnosis and her bluntness, angry at her for thinking of such a thing and hurt that we had been sent there in the first place. She gave me a packet of information. She started talking about agencies, websites and support groups that were in the packet, but I let it go in one ear and out the other. I waited until she finished speaking. When she left, I asked the nurse what other pediatric psychologists were in the office. I wanted another opinion. I looked at the list. There were five others. Surely I could find one who really knew her stuff.

     A month later, I was back in the office with a different psychologist. Right away I was comfortable with her. She was gentle and sensitive and listened with a genuine smile about all I had to say, our concerns, how we found our way to her office, what brought us there, and I even told her what I thought about her colleague! Sruly slept though the whole thing. At one point I tried to wake him but he was hysterical and completely beside himself.

"Is he usually like this?" she gently asked.

"Oh no, not at all," I exclaimed. "He is really a very happy child. This isn't normal at all." I managed to get him back to sleep. We looked at each other and suddenly I felt so helpless, so vulnerable. She slowly looked at me and seemed to be choosing her words carefully.

"Well," she said, "let me show you some things to look out for and come back after the baby is born for another evaluation. He is sleeping, so we can't do that much right now." Than quietly she asked, "Are you afraid of a diagnosis?"

I suddenly felt all of the tension, frustration, confusion and anger that I was fighting so hard to keep locked up, just fall all around me. It was all I could do to hold back the tears. She dropped the subject quickly and said, ever so gently, "Well, how about you come back after the baby is born."

I realize now that she was 100 percent sure that our son had autism, but she also saw that I needed to come to terms with it slowly, and for this I will be forever grateful.

     The last few months of my pregnancy, I slowly started to realize that our son might possibly have autism. I cried myself to sleep almost every night. Our therapists from the Alliance for Infants and Toddlers were so great. They would very gently point out how there were some similarities between Sruly and some of the other little children they worked with who do have autism. This I accepted, but just the fact that he had some similarities. Our OT, speech and developmental therapists were so great. They would encourage me, celebrate Sruly's strengths and progress and  very gently point out the similarities in some of his developmental delays with other children on the spectrum. I began asking for books to read. This was probably the best thing I could have done for myself. They recommended three great books, which became my source of encouragement, hope and support. Knowledge was power.

     When I was by myself I cried a lot, but, like any mother, I knew how to quickly pull  myself together. I couldn't show my friends or family that there was anything of real concern here. I would also try to tell myself that our son may have some similarities with other children on the spectrum, but that still did not mean that he also had autism.

     At first, I would talk with one other woman in the community who also had a son with autism. She gave me so much valuable advice. She was my pillar of support and my shoulder to cry on. Now, however, I didn't want to have anything to do with her, out of fear that if I did associate with her, than that would somehow solidify the fact the fact that our son did indeed have autism, so I made sure not to have anything to do with her. Suddenly I found myself with only our therapists to talk to. I felt so alone.

     In February I gave birth to a beautiful, healthy baby girl. Three weeks later my husband was back in the Child Development Unit with our little Sruly. When they came back, I took one look at my husbands face, and I knew. Through a torrent of tears I tried to protest.

"But did you tell her about this new milestone? And what about this one? And what about his improvement with all of the therapists?"

He had. I could fight no more. I knew. I understood. We were starting on a new and unfamiliar path and I was scared. So scared. Our special little Sruly had Autism.

     The road to acceptance can be a long and bumpy road.  I hope that in sharing bits and pieces of our journey it will help smooth out some of those bumps in the road, but in no way do I want to shorten your journey. Embrace it, and dig deep. Take the time that you need to ask questions, re-discover yourself, your family, get rid of guilt and only allow love. You are loved. You are strong. You are wise. You are perfect. You are exactly what your child needs.

-Matana B.

"G-d did not promise days without pain, laughter without sorrow or sun without rain, but He did promise strength for the day, comfort for the tears and light for the way. If G-d brings you to it, He will bring you through it." - unknown