Progress can be nerve wracking!

So starting next week both boys.... yes you heard me BOTH boys are going to start the YMCA wrap around program next week.

Currently they are both in preschool, at the same school; Bman goes in the morning, Rye goes in the afternoon.

With the Y program Rye will be at school for a full day Tues, Weds, and Thurs. Bman will be at school for a full day Weds, and Thurs; we don't think he could handle more than that.

We know Rye will love it. He loves school and all his "fiends". When he first started school he would cry when I picked up him because he didn't want to leave. (*Yea I felt like an awesome mom, my kiddo would rather stay at school than come home.. ouch*)

Bman's teacher and aids say they think he will do great and love it, we so hope that he will! I spoke with the Y teacher today and they believe they can handle any behavior he might have (meltdowns, avoidance, sensory overload) but he won't be able to stay in the program if he has a high level of aggression towards the other kids...

Well that will all depend on the teachers and the other kids. Not that he isn't responsible for his behavior he is, and we have consequences, reward charts, social stories, PECS, learned scripts ect. for that. But if kids get to loud and hyper while in his personal space... he can't handle that. If they take a toy away, or push him just a little... he retaliates full force. If the teachers don't help him during unstructured play time; he could quickly spiral out of control because he doesn't know what to do.

We have talked through all of these concerns; I am sending in a bunch of tools that help him. Such as the ear phones hat, ipad, chewelry, and sensory brushes that they will put in a basket for him to access any time he needs. They are also making him a daily picture schedule so he knows what to expect for the day and it helps decrease his anxiety.

Lastly but most importantly his aids, teacher, my husband and I; are all taking him by the room to see, meet, and visit for a few minutes each day before he actually starts the program. There is no way we could just show up to a new classroom, with new people, and drop him off; he would FREAK out. So hopefully all the visiting is enough for him to warm up to the idea of being there a couple days.

It is such progress; he is fully inclusive in his classroom (with pull outs for therapy) and now he is going to try this program too! Yippee we are so excited! Oh and this mama is so nervous!!!

Here is to hoping I have thought of everything needed to help him prepare?!?!

While I wrote this I have to admit it made me stop and think... I am not doing any of this for Rye. Does he need it, am I short changing him? He is such a vibrant, social, love everybody child; I didn't stop for a moment to think about how he will react to going into a new room. I am sure he will love it; but he is little and just in case, I am gonna take him to visit a few times too; then he and I can talk about it before he goes.

Do any of your kiddos do wrap around, or after school programs? Were you nervous about them?

Crazy/Beautiful weekends

Weekends can be beautifully awesome... No rushing off to school, mornings cuddling in bed, staying in pjs, spending time with the boys, learning all I ever needed to know about Mario, and Spiderman. Getting as many hugs, and kisses as possible. Playing and being together as much as we can.

Yet... weekends can be all kinds of cray cray! Spontaneous circumstances, public outings, lax schedule and structure, ect... No matter how much we prepare, plan, and arrange accordingly; it can go from great to spinning out of control faster than the speed of light!

On good days/weekends it can all be fun and happy. Or if he is having a off day.. it can be "down in the trenches covered in mud" rough. Sometimes the boys can co habitat in the same area while mommy and daddy try to get some things done around the house. Or they have to be completely separated because they will harm each other if unsupervised.

Usually it is because Rye doesn't understand that Bman wants to be left alone, or that Bman doesn't understand the situation. That usually ends up in a severe aggressive lashing out, tears, self injurious behavior and a total meltdown. Then each boy is sectioned off to a different are of the house to play different things. While mommy and daddy try to smooth everyone's feathers, including their own.

Sometimes it is because even the best laid plans can fail. When we have planned an outing that we were sure Bman would love but 5min after being there he is starting to meltdown and asking to go home. While Rye is desperate to stay. The everything goes crazy and we are one of "those" families getting all the stares.

Still, there can be weekends, that are beautiful. Like this one, right now, sun coming in the windows, both boys giggling and smiling. Everyone is happy, lighthearted, and loving. These are the weekends that I don't want to end.

"Sisters"

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul.  You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.  We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.  Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.  We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.  We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.  We have tolerated inane suggestions and home remedies from well-meaning strangers.  We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.  We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother."  We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

[Author Unknown]