Rose's House-Special Needs Connections


Gabe

I’ve got to tell you, parenting an autistic child isn’t anyone’s choice but life is what it is, and no one ever said it would be fair.

On any given day, all hell can, and often does, break loose. All is well until something unexpected happens.. Today, bowling was great then midway into the game came the inevitable curveball. Gabe’s score wasn’t as high as he thought it should be, he flipped out, he had one of his episodes. He was running up and down the building, throwing bowling balls, refusing to put his shoes on, making a huge scene. The guy behind the counter was looking at me along with most of the people in this place and I know they must have been thinking “Why can’t you control your child?” I had to actually carry him out.

The reality here is Superwoman doesn’t live at this address and I’m not sure how I’m going to get through this.

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The above words were written by Gabe’s mother five days after he came home from a residential setting.

On July 22, 2009 Gabe was given his newest and hopefully correct diagnosis. After an evaluation at the Kluge Children’s Center the official working diagnosis is PDD, ODD, and ADHD.

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Unique Individuals
July 22, 2009, 1:51 pm
Filed under: ADHD, autism, Bipolar Disorder, Oppositional Defiant Disorder, special needs | Tags: , , , ,

I’m still working on writing more of Gabe’s story and hope to have another post ready soon. But in the meantime as I’ve been talking to other people recently one topic has been coming up frequently. I keep hearing/reading about focusing on the strengths in each individual instead of only the weaknesses or difficulties. And I agree.

It’s easy when so much work has to be put into helping the child function in day to day life to forget that there are some very real strengths each of these kids has as well.And sometimes it’s tempting to define the whole person by his/her diagnosis, especially the negatives that come with that diagnosis. But is it fair? Is the diagnosis truly what defines the person?

One 12 yr old I know struggles with NLD and ADHD, yet he is extremely patient with younger kids, and very eager to be helpful and to do things for others. I know an 11 yr. old with BPD who is also very good with younger kids and always eager to help in any way he can. Another 11 yr. old with BPD has a gift for making others laugh with hes unique sense of humor. And speaking of sense of humor, I know a 9 yr. old with PDD-NOS, ADHD, and ODD who can make me roll laughing and never crack a smile (he knows exactly what he’s doing though).

In other words, special needs, or not each child is a unique human being with his/her own special blend of strengths and weaknesses and deserves to be treated as such. I know if anyone decided to focus only on my weaknesses I would be in big trouble and it would be very hard for me to make any progress knowing that my weaknesses were all others were looking at in me.

So lets celebrate each individual’s strengths. No, we can’t ignore the problems. They do have to be dealt with for the good of the individual and everyone else involved. But lets not forget the good qualities, the skills mastered, the strengths, the whole person.



Gabe
July 19, 2009, 3:34 pm
Filed under: autism | Tags: , , ,

July 3, 2009

Autism is a lifelong disorder- there is currently no cure and I refuse to be pessimistic about Gabe’s future.

Gabe is considered to be an extreme case and I have made extraordinary sacrifices in order to handle life with him. I have abandoned most all of my personal goals, lost friends, and lost a job due to his illness. I have expended massive amounts of emotional and physical energy in this process.

Today being only the third day home we unfortunately had a total breakdown. I am completely exhausted, bruised, and I think I’ve hurt my neck from having to physically restrain a 70lb kid for a little over an hour. I knew he would test me but had no idea this would come so fast. I fear I will be unable to maintain the physical requirements needed.  This is going to be the biggest challenge of my life.

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The above words were written by Julie the mother of  9 yr. old Gabe diagnosed with Multiple Complex Developmental Disorder (MCDD). MCDD is a distinct group within the autism spectrum. Gabe just came home from a residential treatment center.

I have known Gabe since he was 5 yrs. old. Gabe is a wonderful little boy in many ways. He has always charmed people with his sense of humor and his quick, sometimes sarcastic wit. At the same time however he has struggled with some very real issues.

From the time he was a baby his mother sensed that there was something different about Gabe. He was a restless child, hard to placate, hard to understand, needy yet pushing away at the same time.

By the time I learned to know him at age 5 he had been asked to leave two daycare centers. His mother was desperate and Gabe was oblivious. All he knew is that the world around him made no sense to him, that he felt bewildered in a world that seemed to make sense to everyone else, and that many things in his environment rubbed his senses raw.

But for the most part he was able to compensate, to concentrate hard and make it through. It  was just hard to keep it together when that other child didn’t cooperate with the plans he had so painstakingly put together, when the control he had struggled so hard to maintain was threatened by an unexpected turn of events, and when the teacher didn’t understand that the answer he had carefully thought through could not be wrong. On top of that the seams in his socks were bugging him, the tag on the back of his shirt was driving him crazy and those noises in the background were enough to drive anyone crazy.

Gabe 7/18/09

Gabe 7/18/09

TO BE CONTINUED



Stories Welcome
July 6, 2009, 10:44 am
Filed under: Uncategorized | Tags: ,

The purpose of this blog is to share our stories and to provide links to others who understand the joys and challenges of this journey. If you have a story you would like to share please e-mail me at burkholderrose@yahoo.com. Or you can contact me on twitter @Roseshouse. Feel free to DM me or just @ me.



My Son Michael
July 3, 2009, 6:09 pm
Filed under: Uncategorized | Tags: , , , , ,

Yesterday as Michael was standing at the kitchen counter watching me cook he reached for something he shouldn’t touch and I said “No, Son, don’t play with that.” Then I realized what I had just said “Son.” It’s been a long time coming but I can finally call him “son” in every sense of the word.

About two and a half years ago I got a call from DSS asking me to possibly take in a teenage girl who needed a foster home. I said yes, I would be interested and she agreed to call me later in the day when she had more details. As she was ending the phone call she stated that now she needed to fine a home for a little baby boy who was in the hospital and whose parents could not be located. She was not asking me to take this case becuase I had already requested that older kids be placed in my home. My two kids at that time were 8 and 10 years old and I really felt like I was out of the baby days. But somehow I heard myself say “I’ll take him.” I was wondering, as the words were coming out of my mouth where this was coming from. I was finished with the baby days, remember?  The case worker was also surprised. “You will?’ she asked. “Are you sure?’ And, I realized, I was sure. It seemed right, right now, for me and my kids.

The next day I met Michael. He was 5 months old but at or below the level of a newborn. He was born at 27 weeks and had been in the hospital several times. He seemed blind, he seemed deaf, he didn’t cry to be fed although he would eat if I put the bottle in his mouth. He choked easily and it sometimes seemed that everything we fed him came right back up. Sometimes he would forget to breathe and have to be reminded. He had numerous small mystery masses, tumors the doctor said- one on his heart, one on his brain, one on his kidney, one under his arm and one behind his ear. No one knew exactly what they were.

And he was my baby. I fell completely and totally in love with him. Many times as I held him I looked at him and wondered if I had taken this baby so that someone would love him, grieve for him and remember him. I wondered if I had been given this chance to love him only to lose him.

One night, actually in the wee hours of the morning, he quit breathing – again. And this time he didn’t start breathing again when I picked him up. None of the usual things worked to get him started again. Trying not to panic I grabbed the phone and at the same time laid him down to start CPR. Just as I put him down he gasped, then was still. Gasped again, and was still. He did that several times than began breathing again. By the time the ambulance arrived he seemed to be breathing normally but we felt he should go anyway.

At the hospital he quit breathing again and it was decided that he should be transported to a larger, better equipped hospital 45 minutes away. He spent the next six weeks at that hospital. He quit breathing a number of times, badly scaring the nurses. Finally it was decided that surgery needed to be done on his airways to remove scar tissue from damage done by ventilator tubes and also to widen them. After surgery he was on the ventilator again as well as on a feeding tube. And he had pneumonia. As he healed from the surgery the doctors began to try to get him off the ventilator but he seemed to have forgotten how to breathe on his own. We prayed and the doctors continued to try. Finally I was told that they would make one more attempt and that if it didn’t work they would have to do a tracheotomy. Everyone prayed harder and we held our breath as we waited to see if he would breathe on his own this time. And he did! He recovered quickly from that point on and was soon able to come home again.

Our next hurdle was weaning him off of the pain medications he had been on in the hospital. They were addictive and even though we tapered them off slowly he still had to struggle through withdrawel symptoms. Although this went better than I expected it was still hard but he fought his way through it the same way he had fought his way through all the other difficulties he had faced.

He has struggled and he is a fighter. I am so proud of him and so thankful to God that he brought him through this. He is developing and progressing well. We had months of physical therapy but now he is finished with that. He has progressed to the point that the physical therapist said he didn’t need her anymore. His speech is somewhat delayed but he is working hard there too and making great progress. The mass in his heart has disappeared although there are still signs of some of the others. Brain scans have showed some loss of brain tissue due to oxygen deprivation. But for the most part he’s a typical little boy. He is often in trouble of one knd or another. He is active, curious, funny, loving and lovable.

And on March 24, 2009 his adoption was finalized and I can truly call him “son”, although in my heart he has been my son for a long time and always would have been no matter what happened.

HPIM3194