Growing Older with Autism

Happy May Day! I really hope that the weather wherever you are in the world is milder than here in Minnesota today! Our gray and sleety (is that a word?) skies are making me very depressed… But I am still full of hope for a happier spring to fully start very soon here in the great north of North America ☺

Yesterday my husband and I consulted with an attorney to keep guardianship of our son when he turns 18 at the very end of this month. 

On May 31^st at 2:03 am Ben will become an adult. Yikes… It means that he will be able to legally sign binding documents and the like… Or refuse to take his meds, or refuse us the access to his school and medical records, etc… You get the picture. In other words he could get in a heap of trouble, because well, let’s face it, he’ll be a vulnerable adult and could be taken advantage of. Thus the utmost importance of conserving guardianship!

Keith and I must petition for it. We will receive a court date very soon. Our attorney Amy Dawson is awesome. She has a son with autism as well and knows the ins and outs of those petitions. Hopefully Ben’s court appointed attorney will also decide that we are the best fit as guardians (!) and it will be an open/closed case.

Despite the simplicity of our case, I cannot help think that our court system sure makes things complicated for folks like us, who just want to take care of our kids the best way we always have and always will… The amount of money involved is ridiculous. I just don’t want to talk about it here. I just hope and pray we will not have to pay more than we can afford. I also hope that the proceedings will be swift and painless!

Update to follow in about 4 to 6 weeks… ☺

Another adventure will begin, as guardians this time! Not that we will ever cease to be Ben’s parents… But as guardians, we learned that each year, on the anniversary of our appointment we will have to file papers with the court. We will have to report on Ben’s well being and his financial affairs as well. Like I said, the adventure continues!!

Today’s Kingsbury Journal from 2008 “flashback” also talks about growing up and what it involves for a child with autism. Why it is so different than from our other kids. Different, not less… Different, and sometimes MORE!  More difficult, more challenging, heartbreaking at times but in the end, it is what it is; and God will help you be the parent you will need to be for this special child in your life.

You will meet special angels on earth to help you along the way… For us it has been people such as our attorney Amy Dawson, the doctors who have helped us with Ben, our many therapists and our friends, our amazing girls Camille and Angelique. Yeah, growing up with autism is hard… But is there any other option than just doing it? ☺

                                         

                                Growing Older with Autism

August 2000 to January 2008

Angelique, 3 years old; Benjamin, 5 years old  

When Ben was five years old we took him to see yet another doctor to evaluate his developmental delays and neurological needs. As concerned parents, we did not want to leave any stone unturned and we had heard that Dr. Martha Lusser was an excellent pediatric neurologist in the Lehigh Valley.

At the time Ben’s eye contact was still very poor, his speech very delayed and he could only follow simple one-step commands. What was also concerning to us was his fixation on objects that we couldn’t pry away from him: his Mickey and Minnie Mouse stuffed animals, his cowboy Woody action figure or even videos like Fantasia or Toy Story. He would get very excited during some scenes of those movies and wanted to watch them repeatedly.

Dr. Lusser diagnosed him with an Obsessive Compulsive Disorder. It sounded so harsh to me for a child so young. Wasn’t it simply part of being autistic? To this day I still do not know, but seven years later, this disorder is still plaguing my boy, so it doesn’t matter what is causing it.

Dr. Lusser told us back then that it was causing him quite a bit of anxiety and that he simply couldn’t help his repetitive behaviors. No amount of therapy and behavior modification, or scolding for that matter, would help him break from his patterns; he needed medication. She prescribed Paxil to help him break free of his compulsive drive.

It wasn’t an overnight relief and miracle cure for him, but little by little, he got better. He was able to relinquish his loud demands for an entourage of five or six stuffed friends down to one or two pals, one for each arm, much more reasonable...

Yes, that’s where we’re still at, at twelve years of age; but we have come up with a solution: beanie babies! I dress him in cargo pants, those “cool” pants with the large side pockets, the friends slide into the pockets, and ta dah, no one is the wiser. Of course there’s the ever present Mickey Mouse... That one will never shrink or vanish, I’m afraid. Oh well, if people stare, what can I do? If it isn’t at Ben carrying one of his stuffed pals, sooner or later, it will be for another reason anyhow.

A scrapbook page showing how Ben made sure he had Mickey and Pooh Bear for our visit to the Sacred Grove in New York state!

Here's a scrapbook page showing Ben holding Mickey AND Minnie in Erie, PA.

And this habit of his did come in very handy the day that the church volleyball team lost track of him at the Xcel Energy Center in Saint Paul. He was carrying his Curious George monkey all dressed in yellow rain gear that day, when he wandered off from his group. The stadium was packed. Of course the leaders noticed right away that Ben was missing but Ben hadn’t noticed he had wandered off.

So the leaders started to look for him and asked people around if they had seen a twelve year old boy carrying a yellow monkey. Sure enough a family found him, took him and brought him back to one of our church leaders. So I am counting my blessings. I never thought that my child’s OCD would save him one day. Incidentally Ben never knew he had been “lost”. Why, he was with Curious George, he was safe!

                       Ben received his George for Christmas 2007, what a lifesaver!! ☺

After years of intensive speech therapy Ben can really communicate with us now. This morning he asked me very pleasantly and very expressively: “And how did you sleep last night, mom?” ☺

When people think of speech therapy they imagine someone making the child repeat the words until they can say them correctly. At least that’s how I thought of it at first. But what Ben went through to become verbal was more a language development and cognitive receptive and expressive language training process. It was a very involved learning experience for both my child and us, as parents and even for my girls.

We had to learn to talk to him and with him in terms that he would understand. What is it difficult? At times. Because sometimes it required me to think about how to ask him things rather than just asking them. Or I needed to use pictures such as the Picture Exchange System, which I wasn’t found of, personally. At times we didn’t understand each other. I remember asking my girls: “What did he say?” And they would know!

Little by little we made progress and now it seems that it happened all at once. Ben can talk! But I know that it wasn’t all at once, it was a process, it wasn’t an overnight miracle once again. Nowadays he can understand more, and more humorous nuances as well, but no sarcasm; he can understand fun and games, but no harsh teasing. He is pure that is why.

We have kept the world at bay and have not let cable television into our home; that is a choice that we have made as a family. When Ben’s language started to really explode he developed “echolalia” which I have mentioned before, he would just repeat things randomly. So we didn’t want things he’d hear repeated haphazardly in the home, especially things he didn’t understand. He was also a mimic and would act out scenes from whatever movie he’d seen. Finally Ben is a consumer, the first thing he utters when we enter a store is “I want something for me”. Enough said. You can understand now why we don’t want cable, I am sure! It has been good for all of us.

When Ben was initially evaluated by a school psychologist prior to his entry in Kindergarten, she attempted to administer the Wechsler Preschool and Primary Scale of Intelligence, which is an IQ test for the younger population.

Ben was just five years and three months at the time. I took him to the testing room but then had to let him go with the psychologist whom he had never met before. I thought we would never make it, but he let go of my hand and went, I suppose by then he was somewhat used to working with various therapists and teachers.

The testing didn’t last long however, the psychologist returned a few minutes later telling me that she couldn’t continue the process because Ben was too distracted by the large flag hanging in the testing room. He had entered the room and immediately started to “talk to himself” about flags one of his most favorite things in the world: gesturing to the flag, saying “flag”, “stars”.

The psychologist tried to start the test without much success as he was lost in his thoughts and completed only two tasks on the first subtest and one on the second. She then discontinued the test. Of course as a result Benjamin scores on the first two subtests fell within the Intellectually Deficient range, corresponding to an IQ lower than 70, or mentally retarded.

And that is how my Ben was now not only labeled autistic but also mentally retarded for the Bethlehem Area school district. It wasn’t a meaningful IQ but it served its purpose because it enabled us to access other services for Benjamin, through the Department of Mental Health- Mental Retardation. If insurance companies were going to insist on treating autism as a mental health issue, not a neurological illness, we had to go that route. The services that we were able to secure were very valuable to a long term special needs family: respite care.

Respite care for an autistic child is key to the well-being of all in the family. I wish we had taken advantage of those services when we were in Pennsylvania more fully.

We relocated to Minnesota in April 2007 and although I truly feel that the Lord led us here, I still feel we are in a no man’s land as far as special needs services are concerned. If you have access to any type of respite, take advantage of them. If you have family and friends that love you and your child enough to offer to watch him or her, let them!

It is good for the child with autism to be away from their family and it is good for the parents to go out and rejuvenate! I have an awesome friend here in Minnesota who loves my family and Ben enough to open her home and her heart to him. Ben loves her because he can feel she loves him.

Ben knows if someone isn’t genuine, so he knows that Becky really loves him. Ben also adores her two year old, Mason. He thinks Mason is his best buddy and Mason loves Ben too; I think that is just so terrific to watch, a friendship between two spirits that came to earth ten years apart. So what? For all I know, those two were best friends in the premortal realm, who are we to judge? Friends are so hard to come by for Ben, I’m just happy he has at least one friend in Mason.