The Gods Must be Crazy!

Have you seen that movie? It's been so long that I'm not even sure if I have the title right and I don't really remember much about it. The title seemed appropriate for this particular blog.

By now you know all about how Heavenly Father slipped another Robinson into our lives right under our noses. Quite a shock but we consider it a blessing at this point. Who doesn't love a baby?! They're so adorable! What you may not know is all the reasons we were sure we were done making babies.

Literally days before we discovered baby Emily (I know, it could still be a boy!) was coming, Ryan and I were sitting in a very serious meeting. I forget what the title of this particular meeting was, all those fancy names seem to get mixed up in my head lately. Basically it was a group of professionals (Speech Therapist, School Psychologist, Early Childhood Education Specialist, Pre-School Teacher) and Ryan and I all coming together to discuss the results of an extensive psychological evaluation that our youngest son, Westley had just completed.

A bit of background. . .

Westley has always been a little different. We didn't realize just how behind he was in speech until his Pediatrician referred us to an early intervention program when he was just 18 months old. He was my baby, I hadn't noticed that he was supposed to be able to say and do all this other stuff. He was a late crawler and a late walker and so naturally he'd be a late talker. He just seemed to have his own pace and only do things after he could do them perfectly.

He never babbled like other babies. West chirped like a bird. I'm not kidding! He sounded like a bird! It usually meant he was hungry or thirsty. I just did what I knew he wanted and didn't get too worried about it. He'd also shriek at odd times. It seemed most noticeable in church. We used to sit behind these older ladies who had hearing aids. West would shriek for no reason (it could be happy shriek, sad shriek, frustrated shriek, they all sounded the same) and their hearing aids would ring as they winced, then 6 rows back a 4 year old would scream OUCH! His shrieks could give me a migraine they were so shrill!

With the referral to early speech intervention, I thought we'd finally get words from him and he'd be less frustrated. (Try needing others for everything, feeding, changing, playing, and not being able to tell them exactly what you want!) He was in speech for about 6 months. The therapist who came to our house started telling me about how busy her load was since they'd lost a therapist. She convinced me that I could continue with what we were working on and West would be fine. What I heard and wanted to hear was that West was back on track and in the normal range for speech and I didn't have to worry any more. That relaxed me until his three year old check up.

Once again, the Pediatrician referred us to early speech intervention. At his age, in the state of New Mexico, that meant he'd have to go to pre-school to get the services he needed. I was devastated! I'm such a mother hen and never like letting my babies go out into the world any sooner than they have to! Westley adjusted like a pro! He loved being a big boy and going to school like Melanie and James. I cried. Eventually we all got used to the idea that West needed to be there to get the help he needed.

His first pre-school teacher warned me to watch for Autism. She'd seen signs in him that were red flags for the ASD (Autism Spectrum Disorder). He was in that school until we moved to a new state (about six months). He picked up a few words but was definitely not talking compared to other 3-4 year olds.

We moved in the middle of the fall so the kids were placed randomly in classrooms that still had room. West was placed with a pre-school teacher that didn't connect with him at all. He was not progressing with his speech and she couldn't relate to any of my own observations of West. After observing in her classroom, I realized she herded the kids through her curriculum and didn't get one-on-one with any of them. I even discovered that he hadn't had any speech therapy for three months! (That's the whole reason he was in school!) I was quite upset. I had to write a long letter to the principal and the Special Education Services coordinator to get West moved to the other class. I was desperate to find a teacher who could reach him at this critical time when he was still trying to communicate with us. He hadn't quite given up yet and I couldn't let it get to that point without doing something first.

The new teacher was a dream! She was the Westley Whisperer! She immediately connected with him and understood what my concerns were. I felt we should pursue extensive testing with him at this point. She didn't feel it was the right time yet. She said, "I don't need a label to know what this child needs." I loved her!! He had her from January until October (yep, we moved again!) and came to life! He began to talk so much we couldn't shut him up! What a season of joy for us all! We finally had a taste of his personality. He was funny and witty! He was amazing!!!

Westley continued to have issues or isms as we called them. They are hard to describe exactly, I just knew he was different and may need help with some of it. For example, we lived in an area with strong winds. Westley would completely tense up in the wind. He'd clinch his teeth, make fists, draw his arms in and shake, frozen with fear. I'd sometimes have to literally drag him to the car! Extremely loud sounds seemed to bother him (OK, no one loves an extremely loud sound) to the point of panic attacks (most of us don't refuse to flush a toilet for fear of the sound). Slides and swings scare him. The rushing water from a shower is completely overwhelming. The list goes on and on.

He wanders around the house generally staying in the same room with a parent making all sorts of dramatic sounds with some toy or other in his hands. He has a great talent for mimicking sounds he hears. New interesting sounds are his favorite. He'll repeat them over and over at random times in the day. His latest repeat is from Fred Flinstone, "Yabba Dabba Do!" He comes out with it at the oddest times! He'll play with certain toys all day and woe be it to anyone who touches his precious whatever but at the end of the day he can't sleep if whatever it was is in his bedroom. He lines them up outside his doorway.

OK, so what does all this mean? Is he just quirky or is there an underlying problem? When we moved to our latest home, we immediately loved the school system here. They seem ready to handle anything and capable of finding answers and the right fit for any kid. Westley was immediately put on the schedule to have an extensive psychological evaluation. His other two schools hadn't gotten anywhere with evaluating him due to his lack of communication. His quirkiness could be explained by lack of communication in their minds. Now that he can communicate, it would be easier to find some answers.

So that's the background. We have a very happy, always smiling little 5 yr. old boy until one of his isms takes over. Finally we'd know the root cause of his speech delay and isms. . .

Back to my original story. . .

Literally days before we found out about baby Emily, we're sitting in this meeting. The results are finally in. One problem, Westley is a puzzle that doesn't fit a clear diagnosis. He literally weaves in and out of an Apsbergers diagnosis. Some of his isms are classic red flags, others aren't quite classic. The psychologist stated that there are Aspbergers kids who test exactly like Westley. Essentially if we wanted to he could get that label if we were prepared to give it to him. By the preponderance of the evidence, he likely does have it. What everyone was concerned about was giving him such a permanent label without giving him a chance to overcome some of his isms first. Basically, we all wanted a chance to work more extensively with him on his specific problem areas and try to draw him further outside the box of classic Aspbergers. We all decided together to instead give him a LD (Learning Disabled) label which would qualify him for the specific therapies he'd need to overcome his problem areas. An LD label could be temporary, we could back off of the therapies as he showed us he didn't need them any more. Two years from now we'll test him again and see where he falls, all in, all out or still weaving in and out of the classic Aspbergers diagnosis. He'd start Kindergarten next year with all the help he'd need to succeed. I was expecting to have more free time as my youngest Laura would be starting pre-school for help with her speech delay(I know! Here we go again with Laura this time!). I was planning to be at the school with Westley nearly every minute that Laura was in school (I'll tell you more about her later.)

My next task for Westley is to choose who I think would be the best Kindergarten teacher for him. Also, I plan to really get to know what Aspbergers is and how best to parent Westley and help him with his isms. It also helps to understand why he does what he does. The approach to teaching him will have to be completely different. Everything will have to be different. The best thing about knowing he likely has Aspbergers, it's something a teacher can appreciate and treat him appropriately for.

Some of the things that came out in the report that we didn't know about Westley were shocking. His biggest problem area is visual spatial. He gets completely lost and can't find his way. (His speech therapy room is right next door to his classroom. He can never find his classroom after therapy.) He doesn't have an internal map like most of us. (OK, so we all get lost sometimes, but this is an extreme version. He's been in that school getting speech therapy for 6 months!) The speech problems he still has are apparently characteristic of Aspbergers. He talks through the sides of his mouth with his teeth closed (don't try, it's nearly impossible to mimic). He's clearly hyper-sensory and needs sensory integration therapy (he can't stand certain textures of clothes, won't let us button his church shirt all the way up even with plenty of room he feels choked). His ability to recognize letters and numbers and translate their meaning to the real world is deficient. It just seems that he needs help on almost every front.

The relief of finally knowing why things have been the way they have in our family since he was born is tangible. Now I know why I virtually became a hermit when he came along. His behaviors are so unpredictable, it was just easier to cut out anything unnecessary. New places, changes in his routine, all were extremely difficult. (We changed his bed around in his room one time when he was 4 and he couldn't sleep all that night! He wasn't able to deal with the change!) Understanding is a beautiful thing!

Westley's needs fill me up. It's hard to have enough left of me for the other three of my children. They each have their own issues too. It seemed perfect that we'd not planned to have more. How could I do it all?

That's the first reason the "God's must be crazy!" You see, I truly believe that the Lord doesn't give us stuff that we can't handle. What I couldn't figure out is why He thought I was perfect for this particular formula of stuff!

This is going to be a long one!!! I can just feel it!!!

To further illustrate how "crazy" it is for Heavenly Father to think I could handle all this I'll share more about my other children.

First, James, my oldest. He's 10. About the same time Westley began pre-school at age 3, we found out that James had a significant dis fluency. He'd studder when he was stressed out. He began speech therapy to correct it. After moving to a new state, James found himself a target of bullying and began to shut down. His grades suffered and he was depressed. The school's solution was to send him to a psychiatrist. The guy we went to was a trip! He was really old and seemed out of touch with James. He didn't even want to visit directly with him only with Ryan and I. He didn't do any testing of James and at the time of our move about 4 months later, his final report stated that James was "not quite Aspbergers." What does that mean anyway?! I ended up home schooling James and Melanie for the first few months of school until we moved to avoid the problems they were each having. Once we got established in the new school, everything got a whole lot better. We found ourselves in an area that focuses on the individual student. The school's policy is to teach to the individual level of each child and not the group. They are grouped according to skill level for math and reading. They are tested for giftedness every year. There are many enriching programs provided. James bloomed! He was found to be gifted across the board in all the areas they test for. He has soared in school here. He's doing great! The challenge with him is keeping him challenged. He's reading a college level robot building book right now. Every problem he had in the past and his current quirks could be explained by giftedness. His mind is always a buzz taking it all in. Sometimes he'll get distracted, and be hard to keep focused. He's just amazing! He's in piano, violin, just finished basketball and is now in little league! He wanted to sign up for gymnastics but after discovering the pregnancy and the need to keep things light I had to say no. He just wants to do everything and try everything and learn everything! It can be exhausting for a parent even without other siblings to consider.

Second, Melanie. Our "neurotypical" child. She's 8. She's a brilliant tom boy artist. She's very athletic and outgoing yet shy for new things. She's hitting that age where she has the girly worries. Who's my best friend? What did it mean when so-and-so did this or that? She worries about how she's dressed, how her hair looks. She won't wear anything I pick out for her. Melanie has noticed that she is the unusual child in our family since she doesn't have "issues" as she calls them. She sometimes feels overburdened by being my helper. I feel she sometime resents that every other of my children gets some sort of special attention. I try to help her deal with things as they come and I try to help her feel special in her own right. She truly is a gifted artist. She's a very talented athlete. She's advanced in her schooling. It's her emotional neediness that I find difficult to deal with.

We've talked about Westley, our third child.

Laura. Previously known as the "littlest Robinson." Soon to be de-throned as the baby in the family. She's quite a character. We noticed her speech delay. We knew she'd need help with it. We didn't live in an area prepared to help us until this latest move. Even without verbal communication, it was clear she could manage. She made up gestures, showed us things and generally got buy. The frustration was really hard on all of us. She knew what we were saying and knew what she wanted to say back but we couldn't understand her. As soon as we were somewhat settled, I referred her to the local program (so glad to be somewhere that had one again!). They did an extensive evaluation and confirmed a severe delay in speech. What was interesting was that everything else was advanced. She's a very smart little girl. We needed to give her a language. She's now in speech therapy once a week and we're all learning sign language together. She's taking to it like a pro! It's a lot easier to learn than I thought. I highly recommend "Signing Time" for anyone interested in reducing toddler tantrums and frustration. Even those who can speak have benefited from this program, improving ability to read and communicate across the board. Laura loves it! We love that she can tell us what she feels, thinks, wants, needs. Her frustration has gone way down. Her personality has come out. She's quite funny! She understands much more than I realized before she could communicate back. It's been a blessing. At the same time, quite a big deal for all of us to learn a new language. There are big social concerns for Laura. It's hard for her to be outgoing and make friends when she knows the other children don't know sign. I see her stare at other little girls and she gives me the sign for friend. I say yes that is a friend and encourage her to go over and say hi. It's so hard for Laura to get past the language barrier. She's also still a baby. She needs so much of me! We're trying to work on potty training. She shows me her muscles and gives me the sign for big and then the sign for Melanie. I say, "you can do it just like Melanie, you're a big girl!" She says,"YEAH!" (one of the words she says best). She's hard to keep up with.

As individuals each of my children need so much of me. Put all of them together and add in the dynamic of their relationships with each other and the draining effect multiplies. I love each one of them and I love being their Mom. I feel completely inadequate. (another reason for the title of my blog) I have to reach deep inside and find that something that makes me strong enough to handle all this. The joy of expecting a new baby is tempered by the wonder of what her special needs will be. So much for my grand plan of being in Westley's school every spare minute. Perhaps this baby will be a quiet one and I can get away with it for a while.

In the end I have to trust in a loving Heavenly Father who knows me and my family better than I do and has a plan that will make all this work out for the best. The trick is relaxing and letting whatever is supposed to happen, happen. I really need to tone down my inner control freak and let it go. It is amazing to look back and see how each thing that has happened that we couldn't have predicted was clearly planned for by Heavenly Father. Each move provided some special something for one of my children that we couldn't have predicted. I truely feel that we have finally found the place we are meant to raise our "Krew" in. I believe that all the right therapies, friendships, programs, etc. are right here.

Maybe the God's aren't so crazy after all!