A note from my Mother- to all Mothers of handicapped children

I received this via email from my mother today. It touched me in ways I can't express. I hope another mother of a special need child reads this and finds some comfort!

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint, Matthew, Forrest, Marjorie, daughter, patrons saint, Cecelia, Rudgledge, Carrie, twins, patron saint..... Give her Gerard...... He is used to profanity." Finally, He passes a name to an angel and smiles. "Give her a handicapped child." The Angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" Asks the Angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She had to make it live in her world and it is not going to be easy." " But Lord, I don't think she even believes in you." God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness." The Angel gasps, " Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize yet, but she is to be envied, She will never take for granted a "spoken word." She will never consider a "step" ordinary." When her child says "Momma" for the first time she will present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." " I will permit her to see clearly the things I see....... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." And what about her patron saint? asks the Angel, with a pen poised in mid air. God smiles. " A mirror will suffice."

Summer is in full swing and Robbie is busy with "summer school" which consists of 2 hours of ABA and 30 minutes of speech or OT in the morning and 2 additional hours of ABA at home in the afternoons 3 days a week. As expected the home based therapy has been going really well- less distractions, and the school based programs have been touch and go. Lately the hardest behavior to handle is the hitting and kicking. Robbie does not like to hear no- as any child would. For Robbie- there are 3 strikes against him. He is a boy. He is a toddler. He is Autistic. For me the greatest challenge has become his size and strength. He is big for his age and very strong. This means- it hurts when he hits and kicks. The bruises on my legs and the shoe mark on my husband's back are the proof. The good thing is he is talking more and asking for more. However many times what he is asking for is not what he wants. Usually we can figure it out- but not always. Our ABA therapist had recommended we start collecting pictures of objects he may want. They use this in the classroom he will be attending in the fall. The reinforcement of the visual cue and verbal cue help. For example- sometimes he asks for a Popsicle but really wants a lollipop. He may ask for blue core ( from the movie Astro Boy) but means a Popsicle. However if you show him the Popsicles with out the box ( where the picture is) he may say no. It is frustrating for him and for us. We continue to work with him and add additional hours of ABA and silently pray for results.

What is Autism?

There is so much confusion about Autism. Autism is a complex neurobiological disorder that lasts throughout a person's life. It is sometimes called a developmental disability. The main signs and symptoms of Autism involve communication, social interaction and behavioral issues. Why is Autism such a difficult disorder? A child with Autism looks like every other child. They don't stand out like those with downs syndrome or some other disorders. When you have an Autistic child people really don't understand the challenges. Why is this perfect looking child having such a severe meltdown or not answering basic questions? It must be bad parenting, spoiled child, etc.

A child with Autism does not retain information as "normal" children do. Robbie needs continual prompts on basic every day skills. How to wash his hands. He knows how- but seems to forget the steps and looks for constant prompts and reinforcement. Potty training- he has repeatedly started off strong and then seems to loose it. He does not like to be wet but if he is not constantly reminded - will not sit on the potty- and then randomly will- without prompts. It is frustrating and makes me worry. The more I read about Autism and talk to other parents ( who are not millionaire celebrities) the more I realize how debilitating this disorder is.

We are in the process of setting up a trust for Robbie. What we haven't said out loud but I think of it everyday- the trust is for our son who may not be able to live independently- ever. We continue to make small advances in some ways and steps back in others. I am watching our daughter develop and she continues to amaze me. Her speech- many times in full sentences and her grasp of concepts. " Why is Robbie crying?" I have explained to my not yet 2 year old daughter that Robbie has trouble getting his words out and gets sad and frustrated. I never would have thought a child so young would comprehend that- but she does. And as she gets older I will continue to explain Autism the best I can. I'm still trying to figure it out myself.

How is Robbie??

How is Robbie doing? That is a question I hear a lot. Honestly it is hard to answer. Some days he knows most of his shapes and colors, other days he can only name 1 or 2. Some nights he sleeps really well, other nights he's awake half the night running up and down the hall way. Some days his communication is decent, other days he recites movie lines all day. My husband gets upset because he says I always have great highs or terrible lows to report to him. That is the way it is right now. We have highs - where I feel incredibly hopeful and the very next day- lows where I feel like the rug has been pulled out from underneath me.

We had an intake appointment at the NJ Department of Developmental Disabilities (DDD). After 6 months of sending in school files, doctor notes, etc- they decided to meet Robbie and assess his ability. ( really to ensure he is truly Autistic ) We arrived a few minutes early and played in the hallway. When were called into the room- there was a psychologist, social worker and nurse sitting at a long table. The psychologist was reading over Robbie's file and they all asked us questions. What differences do you notice between Robbie and his peers? I was a bit stumped by this question because at that moment Robbie was lying on the floor spinning in circles. I looked down at him and then at them and asked for more specifics. The one question that really struck hard was- can he ask for his basic needs? I have been thinking about that since we left. Not really. He is very independent and if hungry will get himself a snack. He does ask for "juice- apples" but I think I give it to him regularly as well. If we go to the lake he becomes so focused on the water he will not eat or drink anything until we're on our way home. The potty- well, we're working on that and making progress. We were told we'd get a call within the next week to let us know if we qualify. The DDD is a lifetime organization that will provide some additional services and information. It will also help him as an adult- should he need it. Needless to say- the phone rang the next day. "Robbie qualifies. You're son has serious behavioral problems." Not a comment you want to hear, but it is true. How is Robbie? We have a long road ahead.

HOPEFUL

Last week Rob and I (along with Robbie's case manager) were able to visit a school option for next year. It is a mile up the road from where Rob teaches - about 8 miles from our house. I went in with an open mind- and I was utterly impressed. I had been very nervous about looking at programs because I felt i didn't really know what I was looking for. My sister in law - who has a special needs child- had told me once you find the right program you'll know it. I think she was right. This school has 2 preschool rooms specifically for autistic students. A kindergarten for autistic students and a preschool handicapped as well as preschool inclusion. WOW! Their day is 9am- 3pm and based around ABA (Applied Behavior Analysis). There is an OT/Sensory room. A PT room. An Art room. A music room. A speech room- I could continue- but to give you an idea of where we are coming from- there is 1 room for almost all. The ratio was 8 children to 6 teachers and next year there will be 4 children in each class. Excited!! Hopeful!! Excited!! That is really all I can say. Many people have said it would have been great if we'd known about this program last year. Honestly, we would not have been ready to accept this is our son. The kids in this program ranged from completely non verbal and using smart boards to communicate to somewhat verbal. 2 boys left one classroom and were asked where they were going. They responded - "to speech." This was in the class where the all the kids were considered nonverbal. It makes me wonder where Robbie will fit. We think of him as verbal- extremely verbal- compared to what we "think" an autistic boy would be- but who knows what they'll see. Most of the kids had those jumpy, awkward movements that Robbie has. A year ago- I would not have seen it. Now- I look and think this is where my son belongs. He could strive here. He will not be the weird kid- they're all "weird kids." Hopefully he will feel comfortable and be pushed to achieve and find a friend or two. It's nice to feel we're moving in the right direction! Hopefully :)

Labels

Autism, ADHD, PPD-NOS, Asbergers syndrome- what???? There are so may labels these days and I'm not sure if they're good or bad. My fear is the misinformation. Will they outgrown it? NO - is it hereditary? NO research indicates so? Birth defect? - Research says no- but I'm not 100% convinced. They're weird? maybe.probably. They'll be fine.- - my response- define fine - as you would for your child.
I find myself brought to tears at the discussion of all these labels and how some children "must be this or that." Yes- they probably are- as well many others who fall somewhere in the middle. But really once again all I can think about is MY son. Where will he fall? will people be talking about him as he gets older? will he be the bad kid, the violent kid, the kid who has no friends.
I see Robbie playing around other kids- smiling, happy- but not engaging. I've seen other children put sand on his head or squirt water in his face- while their parents watch and do nothing and I want to scream. My son is enamoured by the water itself and doesn't even flinch. I find myself stepping in and telling kids not to do that to him. I am his voice because many times he can't find his. I guess right now that is what I want for my little boy. Find your voice Robbie! We ( Mommy, Daddy, Lexi) hear it sometimes- but no one else does. Find your voice and tell us what we can do to help you. The hardest part is hearing your 4 year old moan and whine because something is wrong- headache, tired, cramp, frustrated, hungry, etc.- but he can not tell you what it is. To the rest of the world he looks different, weird, etc. I am tired of explaining to others- " My son is autistic and this situation ( whatever it my be) is really difficult for him."

Walk Now for Autism Speaks

A few weeks ago we participated in a walk for Autism Speaks in Mount Laurel, NJ. We weren't sure what to expect but figured we'd give it a try. Rob coordinated fund raising through his high school's STARR club- students together for Autism Research. We had family members and friends come to support the event. The event was great. Although most of the kids were either much younger or much older than Robbie. I didn't see many his age- if so they were severe. Here's why. The day was HOT, crowded and very overwhelming. They had 2 moon bounces- which Robbie loves but would not get off so others could have a turn. There were games, bubbles, arts and crafts, etc., etc., etc. Lexi had a blast drawing with side walk chalk and blowing bubbles with Aunt Suzie until she saw Robbie melting down and then felt she should melt down too. " I do what my brother does." Rob did get Robbie to calm down while he was touring a real fire engine- what kid wouldn't love that! During the actual walk itself I took the kids back to the minivan for water and a movie to calm and cool Robbie down. In retrospect- it was too busy for him- but maybe next year will be better!!