It's All About Becca

Time to bring out the big guns

2009-04-30T04:11:00.000-07:00

Tomorrow we head to Florida for our appointment with Dr. Rossignol. People have asked me why I haven't just taken Becca to a local DAN doctor. I know there are some in our area, but I don't of anyone who has gone to any of them and gotten any real help. We have waited far too long to see a DAN doctor. We've been rather conservative with the biomedical treatments and we've been relying on our own research with no real guidance. I talked to a mother who has a very severely affected child, who has been all over the country trying to get effective treatment for her son. She said Dr. Rossignol was the only one who was able to help him. I did some research and liked what I learned about him. He's got a good track record, and at this point, with Becca being nine years old, that's what we need. We've put this off far too long. CHOP is our local children's hospital, and their philosophies tend to spread throughout the local community. Autism is treated as a psychiatric disorder, and the core medical issues tend to get overlooked. I find myself getting further and further away from anything related to CHOP. Our GI doctor is in Boston, we're seeing a metabolic specialist in Cleveland, and if the CHOP endocrinologist doesn't start doing some serious testing I've got on lined up in California. I'm excited and very hopeful about this appointment. I should actually be packing now, our flight leaves very early tomorrow and we'll be up at 2 AM getting ready to leave for the airport.

"Let's pretend I don't have autism"

2009-04-29T09:24:00.000-07:00

The words came out of the blue. We were driving on the highway on the way to OT, talking about nothing in particular. Then she said it. I nearly went off the road. She had never said anything like that before. Well, she had told me before that she doesn't like having autism and that she wants to "make it go away." Perhaps knowing that she isn't able to make it go away, she is doing the only thing she knows how to do, and that is utilize her imagination and retreat into that pretend world. Apparently, it's a world without autism. For so many years, it seemed that she wanted to retreat INTO her own little world of autism. Something has changed. It is so hard for me to know what is going on in her head, but it seems that she is beginning to be aware of what having autism has brought into her life. I tried to get her to tell me more. I'm sure I pushed too hard, as I often do. I'm so desperate to know what she's thinking. I know I asked too many questions. "Mom, you talk WAAAY too much." That's what she always tells me when she's overwhelmed and just can't give me the answers I'm seeking. But I pushed a little more. I just wanted to know what she thought would be different if she didn't have autism. She finally said, "Then I'd feel better." She sounded so weary as she said those words. I still don't know exactly what she meant. Is it the miserable GI issues that cause her so much suffering? She can't always tell me. And she has learned to deny pain if she thinks it's going to mean a trip to the doctor. I wonder what else is bothering her. I know how I hate my own ADD. I hate the feeling of my brain being in overdrive. Becca is so easily distracted, but does it feel the same to her? I just don't know. Is she referring to the anxiety, the isolation, the sense of being "different?" She can't tell me. All I know is that she doesn't want to have autism. It's the reason why I will never stop working for her recovery. There is no way I will ever accept that she has to have autism. I know I cannot guarantee she will recover, but it won't be for lack of trying on my part. I've been told I need to accept her autism, to let go, even to accept it as God's will. But God has not brought me to that place of acceptance. If that were the case, I'd know it. I might have to be dragged kicking and screaming into that place of acceptance, but I'd know. That hasn't happened. If anything, my faith is just giving me more strength for the fight ahead. I know I'm going to need it.

Inconclusive is not an answer

2009-03-26T05:48:00.000-07:00

We're heading to Boston to see Dr. Buie. I'm trying not to expect too much. We saw him a couple of years ago and have been following up with phone consults. He seems to be able to work wonders with other kids but refers to Becca as a "hard case." At least he tries. We know we're not getting any answers from anyone at CHOP. Their GI department is a joke. Wait five months for an appointment, get a prescription for Zantac. They completely botched an endoscopy and Dr. Buie had to do the whole procedure over again.

Becca's pediatrician says she's probably going to be one of those kids that always falls into the "we don't know" category. Comforting words from a pediatrician. At least she's honest. It's getting kind of frustrating. The neurologist says the MRI is "inconclusive." The endocrinologist says some hormones are elevated, but "we don't know what that means and there's nothing we can do about it." The metabolic specialist says something is "not right" but she can't put her finger on it. Not exactly helpful, but at least they weren't insinuating that I'm imagining all these issues. We've been down that road before.

So it's off to Dr. Buie today, and in May we see Dr. Rossignol. Wish I'd made that appointment years ago. Somebody out there has to have some answers. I have to believe that.

2009-03-08T18:37:00.000-07:00

OK, I've completely ignored this poor little blog for more than a month. Life with autism tends to get in the way of writing about life with autism. So much has been happening, and Becca is making such wonderful progress. This last month has been amazing!

One little incident this morning made me realize how far we've come. When Becca woke up she asked me if it was Sunday. I said yes, and she looked disappointed. Then her face changed, and I could see something going on. She quickly said, "I have a sore throat." Then she turned away, unable to look me in the eye. She had remembered not going to church last week because she had been sick with a sore throat. Trying not to laugh, I told her not to lie about being sick in order to get out of going to church. She looked at me, shrugged, and said, "Well, it was just one little lie."

Now do I want my daughter telling lies? No way. But am I thrilled that we are now at a point where she needs to be taught not to lie AND to not justify the lie? You bet. Two years ago, I couldn't imagine having such a conversation with her. Now I'm starting to deal with the NORMAL things that parents have to teach their children. And I'm loving it!

Ian Gromowski

2009-02-04T08:40:00.000-08:00

Yet another innocent child was forced to "take one for the herd." Another family devasted. When does it end? Rest in peace, Ian. Your death will not be in vain.

http://www.ageofautism.com/2009/02/managing-editors-note-below-is-the-story-of-iam-gromowski-a-boy-who-lived-47-days-after-his-hepatitis-b-vaccination-thank.html#more

"Because I Have Autism"

2009-01-19T18:32:00.000-08:00

Becca has been aware for quite some time that she has autism. How well she understands what it is, I don't know for sure. Last spring, she became aware of what it means in terms of being discriminated against. She doesn't understand bigotry, but she knows her autism resulted in her being excluded.

When Becca was still attending school in our district and was beginning second grade, her TSS decided to start a lunch buddy program. She would have Becca choose a friend and they would have lunch in a quiet room in the school, away from the noise and constant activity of the cafeteria. She had the full approval of Becca's teacher and the school principal, and the parents of the children also had to give their permission. There was one little girl in particular that Becca frequently asked to join her for lunch. I won't use her real name, I'll call her Cathleen. Initially Cathleen's mother gave her approval for Cathleen to participate twice a week. At some point, though, she changed her mind and decided she only wanted Cathleen to have lunch with Becca once a week. She made sure there was no chance of the girls having lunch together more frequently by sending Cathleen to school with a peanut butter sandwich, being fully aware that Becca has a severe peanut allergy. Still, there were a few other girls that would have lunch with Becca, and every day she and Cathleen would play together at recess. Each referred to the other as her best friend. The teacher also assigned Cathleen as Becca's "homework buddy" in the classroom. She was to remind Becca to write down her homework assignment and put her books in hr backpack. However, her mother suddenly decided that this was too much of a "burden" for her. Becca went in to school one morning to find her seat was changed. Cathleen was paired with another child. The teacher seemed unaware that Becca actually had feelings and didn't bother to explain the change to her.

Cathleen came over for a play date, and I spoke at length with her mother. Cathleen also attended Becca's Christmas party, and her mother was present the entire time, which gave her plenty of opportunity to see how well the girls played together. We talked a few times about scheduling more play dates. We finally came up with a date and time. Cathleen's mother had somewhere to go that morning but said she would call me as soon as she got back and then I would bring Becca over. This would be the first time Becca would be going to someone else's house without me present. It took a lot of work to prepare Becca for something like this. I think most parents with children on the spectrum can understand this. I had a social story prepared for Becca, and we read it together repeatedly. We waited and waited for Cathleen's mother to call. The afternoon passed by, and Becca was just heartbroken. I finally took her to the playground. There was no phone call, no explanation. I just didn't know what to tell Becca.

I accompanied Becca's class on a field trip, and Cathleen spoke to me about what a good friend Becca was to her. It was gratifying to hear another child describe Becca's positive qualities. Although Cathleen was protective and helpful toward Becca, it was clear that she truly enjoyed the friendship and didn't just befriend Becca out of sympathy.

Becca knew exactly when Cathleen's birthday was, and Cathleen must have mentioned a party because Becca assumed she was going to attend. She was in for a rude awakening. I will never forget her words as long as I live. "Cathleen's mother won't let me come to Cathleen's party because I have autism." She then repeated everything Cathleen had said to the TSS about why her mother wouldn't allow Becca to attend, all ridiculous assumptions about autism. I talked with the TSS, who confirmed everything. In the meantime, Becca started to go into denial, saying she WAS going to the party. There was no way I was going to tell my daughter that Cathleen's mother was a bigot who didn't like kids with autism. I lied. I said there was a misunderstanding and that Cathleen wasn't having a party after all.

I have often wondered what would've happened if I hadn't made the phone call. I am still convinced she would've put an end to the friendship over the summer break. I still think it was right to call this woman on her bigotry. But the price to pay was high.

I called Cathleen's mother and calmly asked her to please ask her daughter not to mention the party at school, as it was upsetting to Becca. She said she was sorry that Becca felt hurt. Then I asked her if she didn't want the girls to be friends. She started becoming very defensive and made excuses for her actions. She then said Cathleen was the one who chose not to invite Becca. I knew very well from the conversation that had taken place that that wasn't at all true. She turned it around on me and said I was taking it personally. Well, yeah, since it was my child being devastated, I guess I was taking it personally. She offered to have a "separate" party to which Becca would be the only child invited. Last I knew, "separate but equal" was not equal. I politely declined. Then she asked if I would forgive her. I'm pretty forgiving, but what she was doing was asking me to forgive her in advance for something she intended to do that she knew would hurt my daughter. She had the opportunity right then and there to turn everything around, and she didn't want to, but she wanted me to forgive her. I said nothing, and she got uncomfortable. We ended the call.

Any satisfaction I had in knowing I had addressed this woman's hurtful behavior was very short-lived. The following afternoon I received a phone call informing me that Becca's TSS would no longer be allowed in the school. Being the vindictive creature that she was, Cathleen's mother had called the school principal and said her daughter's confidentiality had been breached when the TSS confirmed to me what Becca had said. There was no proof of this, so the school had to find something else. They read the daily log book the TSS sent home to me, in which she had helped Becca obtain and write down the phone numbers of some kids so that she could invite them for play dates and parties. They had been looking for an excuse to get rid of the TSS, and the spiteful actions of an embarrassed woman gave them the excuse they needed.

The school year ended, and surprisingly Cathleen was allowed to attend Becca's party and come with us to a movie as well. Her mother and I acted as if nothing had happened. I really think she wanted to "prove" to me that she had no problem with Becca's disability. There were talks of more play dates, but then the excuses began again. When school began and she learned Becca was being homeschooled, I think she decided she could drop all pretense. Cathleen was supposed to attend Becca's birthday party, and Becca was so excited to know she would be there. On our way to the gym where we were having the party, Cathleen's mother called and gave us some lame excuse. I told Becca, and the look on her face was heartbreaking. She grew very quiet and had a look of resignation. She no longer had any real enthusiasm for the party. The day was ruined for her. A few weeks later the girls saw each other at another child's party. They were inseparable and had a wonderful time together. Cathleen asked me again if Becca could come to play at her house. I just told her to have her mother call. I made one last attempt to arrange a playdate. It was met with the usual "I'll let you know." However, this woman had no problem soliciting a donation from me for one of her pet charities. And that was the last I heard from her. The invitation to Becca's Christmas party went unanswered. Becca still talks about Cathleen and cannot understand why they can't play together. I don't know how I will ever explain it to her.

I learned that Cathleen's grandfather is the executive director of the human services agency where Becca attended preschool. This agency is the largest provider of services for developmentally disabled individuals in our area. I wonder if he knows how his granddaughter is being raised to discriminate on the basis of disability. Would he care?

I'm sure I sound bitter. I really try not to be, but my daughter continues to be hurt. It's not like this is the first time something like this has happened. There have been other children who have wanted to play with Becca. It's the mothers that have prevented it. I remember a little girl from dance class coming up to me and asking to have a playdate with Becca. Her mother grabbed her by the wrist, told her to be quiet, and nearly ran out of the building.

So much for autism awareness. Can we stop raising money for it? People are plenty aware. They're aware that they don't want their precious little darlings exposed to it. They don't want our kids in their classrooms, and they don't want their tax dollars spent on special education services when they could be better spent on sports programs.

Last year when the school principal wouldn't allow the TSS in the classroom, I was compelled to tell her exactly what had brought about the vindictive actions of Cathleen's mother. The principal suggested we have a parent training on autism. She thought the PTO could arrange it. My response? "She IS the PTO." Yes, the woman who had hurt my child so deeply was one of the most active parents in school organizations, and she would be responsible for educating parents on autism. I declined the principal's offer.

Becca does have one very good friend now. Her name is Victoria and she lives three hundred miles away. She is the daughter of one of my oldest friends. We only get to see each other a few times a year, but the girls get along great. When Becca does something a little quirky, Victoria will look puzzled, then shrug and join in with whatever Becca is doing. She seems to think Becca's little quirks are kind of cool. We're making plans to visit each other more often this year. But somehow, it just doesn't seem right to have to travel three hundred miles to see your one and only friend. It just shouldn't be this way.

Which is the better value???

2009-01-18T13:12:00.000-08:00

I just received the EOB from Becca's tonsillectomy. Twenty-thousand dollars. Yup, that's right, twenty-thousand for a same-day procedure, no complications. My C-section didn't cost that much. For only thirteen thousand I got three days and nights in a private room with a great mattress and delicious food, and I went home with a beautiful baby girl. Gives me something to think about. If we didn't have the insurance we have, would it make sense to have her tonsils removed? I think having another baby would be a better value.

OK, all joking aside, Becca really did need to have her tonsils removed, but this is what really bugs me about health care. There is NO WAY it cost anywhere near twenty thousand to remove tonsils. I know my insurance didn't pay the full amount, but it's absurd that they can artificially inflate the price like that. Becca's special needs stroller is just another example. She can walk, just not for any distance. If she walks for more than a block she can't do anything else for the rest of the day. She also has trouble navigating through crowds because of her visual perception and motor planning deficits. She had long since outgrown a regular stroller. Our primary insurance agreed to pay for a special needs stroller. It took four letters from our pediatrician, and numerous phone calls and threats of legal action from me, before our secondary insurance finally paid the balance. I can almost understand why. When we went to the hospital to pick it up, I took a quick look at the invoice that was attached. Three thousand dollars! I remarked on the price, and the physical therapist that had fitted Becca for the chair said the insurance would only pay about half that amount. Out of curiosity I went online and checked the manufacturer's website. The stroller could be ordered directly through them for just over fourteen hundred. When I received the EOB, I saw that the insurance had paid the medical supply company a little more than that. I think it's safe to assume they had purchased the chair at a lower cost, so some profit was surely made. Had the pediatrician and I not been so persistent, Becca would not have the stroller. Rather than deal with suppliers who inflate the cost, the insurance companies will just continue to deny claims. This is not the first time we have had to fight the insurance company. A couple of years ago I had two different appeals going on. I appealed each matter four times. I was actually starting to get the appeals confused. It took a hearing to get one matter resolved in Becca's favor, and the other was settled right before a hearing. Fighting for medical care, while simultaneously fighting for Becca's educational rights, became a full-time job. When does this end? I would like to be hopeful that, with the incoming administration, we will see some relief. Unfortunately, it's looking to me like even more restrictions are ahead of us, with a one-size-fits-all approach to health care. I sincerely hope I am wrong!

I actually put some clothes on for this one!

2009-01-13T12:16:00.001-08:00

Another painless IEP meeting. Can't believe I'm actually saying that, after all we went through with the school district. I just love the cyber charter school. I'm still a little nervous before each meeting, because I'm so used to having to fight so hard for every little thing. I've come to expect contentious meetings. Now, with this school, I tell them what I think Becca needs, and they say OK. We just had another meeting. I got dressed for this one, unlike the last one where I wore my bathrobe. Yes, the meetings are conducted over the phone. Heck, I could've baked a batch of cookies while this one was going on. I'm still amazed at the services we're getting. Tomatis, Interactive Metronome, and FINALLY some ABA. Never would've happened in the school district. We're also getting a vision therapy evaluation, and they are sending a program for Becca to learn keyboarding. They let me find my own therapists and will contract with them. I've been able to get evaluations done by people I know and trust. Becca no longer qualifies for physical therapy, but the evaluation was done by someone who has worked with Becca before. I trust his judgement. Becca gets more speech and OT than the school district was ever willing to give her. The district completely ignored the assistive technology evaluation we had done by one of the leading experts in the field. They still wanted to do their own assessment, which I know would've resulted in another denial of services. The cyber school, on the other hand, read the assistive technology report,and within a week after the IEP meeting I received the two programs Becca needed for written communication. Finally, with the services Becca is getting now, there is some hope that we will be able to make up for all that was lost in those three years with the district.

So it all comes down to curves?

2009-01-09T03:54:00.000-08:00

or lack thereof??? http://www.ageofautism.com/2009/01/new-autism-study-conducted-by-boobs.html#comments

When I got over my initial rage at the amount of money wasted on so-called research like this, I looked at it for the entertainment value it provides. So did all the folks over at Age of Autism. Everyone needs a good laugh now and then.

Long post alert!

2009-01-08T12:00:00.000-08:00

At some point I may have to be very careful about what I say in regards to my daughter's school district and all that happened over a three-year period. Obviously I'm not going to reveal the name of the school district or the location other than to say we live in the suburbs near Philadelphia.

Becca began receiving early intervention services through the county at sixteen months and then transitioned to the local I.U. at age three. She then attended a preschool program through an agency that contracted with the I.U. and had related services and therapies both in preschool and at home. Becca loved preschool and I loved sending her there. Not once in three years did I have to worry about her safety or well-being. I chose to provide transportation, and that gave me an opportunity to speak with her teachers frequently and watch her interact with those around her. For three years I felt like I was actually part of the IEP team. I felt my input was valued. Never once did I experience a condescending attitude from a teacher or therapist. If I felt extra services were needed, it wasn't too difficult to obtain them. I never even gave a thought to due process. Our IEP meetings sometimes ran over schedule because everyone had a funny little Becca story to tell. The staff actually cared about Becca and wanted to see her succeed. We had the option of keeping Becca there for one additional year and delaying kindergarten, but everyone thought that she was definitely ready to transition at that point. Our local school district sent a psychologist and a speech therapist to evaluate her. The psychologist's recommendation was regular kindergarten classroom with itinerant autistic support. An IEP was developed that stated Becca "had no behaviors that would impede her learning or the learning of others."

The school district was in the habit of grouping children by diagnosis. Kids with autism went to one school, those with Down Syndrome went to Lifeskills at another school, CP at another, and so on. Inclusion? Least Restrictive Environment? What's that? Even though Becca was to attend a regular classroom, we were told she could only receive autistic support services at one particular school. If we chose our neighborhood school instead, there would be no services for autism. So we reluctantly sent her to the other school, and I attended the kindergarten orientation. I listened to the principal talking down to the parents in the most condescending tone, and I knew we were not off to the best start.

Kindergarten did not resemble anything I remembered from my own childhood. Becca had just spent three years in a preschool program where hands-on learning and free choice of activities were an integral component of the curriculum. There had been plenty of opportunity for movement throughout the day, and circle times had been limited to about fifteen minutes. Now, she was expected to sit for long periods of time at a desk in an environment with a heavy emphasis on academics. The teacher told me that she had informed Becca that she, not Becca, was the only princess in that classroom. Right then and there a battle for control had begun.

There were issues right from the beginning. Early on there was an incident where Becca was wandering around the school and nobody knew where she was. There were several incidents where Becca tried to leave the school, but each time my concerns were brushed off. One Monday afternoon Becca was punished by being made to sit on a wall during recess for some minor infraction that had occurred the previous Friday. She had absolutely no clue why she was being punished. There were meetings; the OT stressed that Becca needed recess each day and that it should never be taken away as a punishment; the teacher sulked. Becca did well academically but began to develop behavior problems we had never seen before as she tried to deal with the sensory overload and increasing demands of keeping up with a regular classroom. In preschool she had had three hours a week for OT with an emphasis on sensory integration, seventy-five minutes each week of speech therapy, and weekly PT. Now, she was getting only "consultation services" for OT and PT, and thirty minutes of speech each week with another child. No surprise she regressed.

There were plenty of other issues, but looking back kindergarten was great in comparison to what would come next. We had decided to place Becca in our neighborhood school, and she would get additional help needed through the learning support resource room. There was no reason to keep her in a school with an autistic support program when she got almost no support from that program. They never even told me they had a social skills class. I heard of it from another parent halfway through the year and had to request that Becca participate. So Becca started attending our neighborhood school. Her teacher with thirty years of experience had never taught a child with autism. She wanted to learn, and she was willing to communicate with me, but her teaching methods were just too rigid. She was too quick to have Becca removed from the classroom at the slightest sign of a problem. The principal was not a disability-friendly person. Other children with disabilities had transferred to this school, had been set up to fail, and had been sent back to their previous schools. I was determined not to let that happen with Becca. The teacher measured Becca's success by how well she fit in with the other children and by how much she acted like them. By those standards, Becca could never succeed. Yet, there was no plan in place to help Becca fit in. The principal insisted that Becca had to have a TSS in order to attend the school. While I was more than happy to have our TSS there and fought to keep the services in place, to require a TSS was against the law.

Midway through the year we saw some very sudden changes in Becca. She started making little noises repeatedly, and they increased rapidly in frequency. One day she looked at me as if she was confused as to why she was making these noises. I knew she could not control what she was doing. I immediately spoke with her pediatrician, then scheduled an appointment with a neurologist. With a family history of Tourette Disorder, I was pretty sure I knew what we were dealing with. But I wasn't prepared for just how she would be impacted. Becca already had issues with OCD, anxiety, and distractability, and Tourette Disorder exacerbated the situation. Becca had been on Zoloft for the OCD, but she began to react badly to it, and her pediatrician felt it might be increasing her tics. In addition, it was making her disinhibited. She began getting discipline notices at school for behaviors that were clearly beyond her control. We got her off Zoloft, but she had to go through a week of horrendous withdrawal symptoms. She suffered tremendously. I really thought we had reached our low point then. I didn't think it could possibly get much worse. The neurologist gave a diagnosis of Tourette Disorder but said she couldn't do anything to help us. I practically fell on the floor. Who was supposed to help us if the neurologist couldn't? She did prescribe Tenex, which actually helped with the tics for a few months.

Apparently there were some meetings about Becca to which I wasn't invited, and it was decided that Becca should see the school psychiatrist. The teacher told me she had attended classes taught by this psychiatrist and thought he was brilliant. She thought he could really help Becca. Desperate for any kind of help we could get, I agreed to the evaluation. In the meantime I received a notice indicating the school wanted to consider the "best placement" for Becca. I immediately called the learning support teacher, who said it was the district's position that Becca should return to her previous school. She gave me no reason why, and couldn't tell me what it was that they could do for Becca in that other school that couldn't be done for her in her current placement. I told her flat out that Becca would never return to that school.

I didn't know at that time that I didn't have to take Becca for the evaluation. I've certainly educated myself on our rights since then. Very early in the evaluation it became clear to me that the psychiatrist was just going to agree with the recommendations of the district. So we spent ninety-five percent of the evaluation with him recommending the change in placement and me explaining why we wouldn't agree. He was very surprised when I told him of our negative experiences at the previous school, and he admitted he hadn't been there for about eight years. He also said thirty years earlier it was the best program around. So there you have it, a psychiatrist recommending a program of which he had no recent knowledge. During the evaluation Becca exhibited one little vocal tic. Her tics had been under control for a few months. But after that one tic, the psychiatrist recommended she could benefit from Haldol. Yeah, that's right, Haldol. Like it's 1965 or something. He quite obviously had no knowledge of the best treatment for children with Tourette Disorder.

The school district knew they couldn't force a change in placement. I threatened due process to get some of the services Becca needed for the following year. The school promised a lot but delivered nothing. The TSS left on maternity leave, and we got a new one who was fabulous. Becca started second grade with a new teacher who was supposed to be more flexible than the previous one. I thought we were off to a great start. A few months into the school year, I learned there was an incident where Becca had impulsively written something on the board, just a few words from a story she had read. Both the classroom teacher and learning support teacher decided she had to be punished. They tried to make her stand on a circle at recess in front of all the other children. She cried because she didn't know what she had done wrong. They told her she had to stand for ten minutes, and she asked them if she could stand for twelve since it's her favorite number. That alone should've told them she had no concept of what was going on. I couldn't believe this had happened because her IEP stated she was not to lose recess. I checked the latest copy of the IEP and saw that that stipulation had been removed. They had pulled a fast one on me! I remembered back when I had signed the IEP, the teacher said she had left the program modifications and specially designed instruction "pretty much the same." I had been fighting so hard to get PT, OT, and evaluations added to the IEP that I just didn't notice that one thing they had removed. It was intentional, and now they were going to use it to their advantage. I was shocked at the message they were sending the other kids as well. How could they get other children to understand and accept Becca's disability if they had her singled out as one of the "bad" kids by punishing her for her disability? I called for an IEP meeting and was accompanied by a lawyer and education consultant. The teachers were petulant and defensive; the spec. ed. supervisor was practically screaming. It was not a pretty scene. But the IEP was changed, and they also agreed to having the teachers trained in educating children with Tourette Disorder (they never followed through, though).

Out TSS was just awesome. I don't know how she stuck it out, though, as there was such hostility toward her since she had intervened when the teachers had tried to punish Becca. That was the beginning of the end for her tenure there. She did amazing work with Becca, most notably setting up a lunch buddy program in a quiet room twice a week. She would facilitate conversation and then encourage the children to play together at recess. This resulted in Becca actually having some real friendships for the first time in her life. The program was so successful that the school decided it shouldn't happen. There seemed to be an issue with anyone else doing anything successfully. They found an excuse to get rid of the TSS just a couple of weeks before the school year ended. I'll elaborate on that in another post. Despite getting rid of the TSS, they didn't have a plan in place to provide Becca with an aide. I had to have the psychiatrist write a note saying it wasn't safe for Becca to return to school without an aide. They immediately provided an aide. I think they knew there would be legal action, as there had been another incident when the TSS was absent and Becca had walked out the side door of the school and was missing for about twenty minutes.

We had another IEP meeting. The spec. ed. supervisor requested a facilitator from the state, and then proceeded to make a fool of herself by screaming at me during the meeting. We had to continue the meeting, and things got even worse. They reluctantly agreed to some of what we wanted, but I had no confidence they would comply. I also learned of an incident where Becca had been sleepy in class and didn't feel well enough to take a reading test. She has low muscle tone and has difficulty sitting up for any length of time, and she was falling asleep in school almost every day. I had already informed the teachers she was being tested for mitochondrial dysfunction. But the teacher was relentless and insisted Becca sit up. Becca had a meltdown, which by the way NEVER happens at home. She has not had a meltdown outside of a classroom setting in YEARS. If she's getting upset, I can diffuse it in 15 seconds flat. The "professionals" at school can't seem to deal with it though. They decided to punish her for getting upset. They punished her by not allowing her to have a friend accompany her to social skills. Um, I thought social interaction was the whole purpose of social skills. To punish her by not allowing her to interact with a friend was just plain cruel. I think that's what did it for me. I knew I couldn't let the situation go on any longer.

While reading over the IEP that I just couldn't sign, I thought back to three years earlier when they had written that Becca had "no behaviors that would impede her learning or the learning of others." Now, they had put in the IEP that she had "subjected the class to outbursts and aggressive behaviors." My little girl, who is the kindest, most caring child I know, was basically being labeled as aggressive. There was no mention of all the times she had been the VICTIM of bullying. Yeah, that was an issue too. She had been taunted and bullied, and there were several children who would just manipulate and take advantage of her. But no, she was the aggressive one.

I was also concerned about how the district had handled behavior issues with other children. I knew they had called the police on a couple of young children with autism. I also knew they liked to get kids placed in "emotional support" classes, and once there, you never got out. We ended the school year without an IEP in place for the following year. Almost immediately Becca's tics all but disappeared, even though she was off her medication. She thrived at summer camp and was relaxed and happy. I had looked into several private schools but found none that I thought were appropriate. But I knew sending her back to that school wasn't an option.

I met a parent who told me about a cyber charter school. His son who had Asperger's was being educated at home through a "virtual school." I was impressed with what he told me. I learned his son was getting excellent services and therapies, the kind of things the school district would never have given us. By the end of the summer I had researched this option and had enrolled Becca. It wasn't easy coming to this decision though. I knew Becca would miss being with other kids. Despite all that had happened she actually liked going to school. I had to talk with her about it, and I didn't want her to think she had done anything wrong. She knows she has autism, and I told her that it wasn't a good school for her because the teachers didn't really understand autism. She told me she would just forgive the teachers. When the day came to start the program at home, she said, "I have an idea. Let's make my autism go away. Then I can go back to my old school."

Becca has adjusted, and I'm thoroughly enjoying the experience. Our IEP meeting was painless. I wore my bathrobe and slippers (it was done over the phone). We basically got everything we asked for, and we got to choose our therapists. I couldn't be more pleased, but it should never have come to this. We are not done with the school district. Their failure to meet Becca's needs and educate her appropriately is being addressed. Stay tuned!

And while I'm on the subject......

2009-01-02T19:30:00.000-08:00

Shouldn't they require servers to at least have a basic understanding of food allergies? If that's asking too much, shouldn't they at least know that FLOUR is typically made from WHEAT? We were at a restaurant a few weeks ago. It was actually the first time we had all ventured out to a restaurant together since we started the diet. Becca wanted eggs and bacon, her new favorite meal. Thankfully we've got her taking fish oils. She's going to need them when she develops a cholesterol problem before she turns ten. Anyway, I went through the whole thing about gluten, dairy, etc. The server brought out her meal and for some reason there were fries on top of the bacon and eggs. I knew right away there was some kind of coating on the fries. I asked the server if they were coated with something containing wheat. She said the coating wasn't made from wheat, it was made from flour. My mouth just dropped open. I told her flour is made from wheat. She got very defensive and said she didn't know that and took the plate away in a huff. I heard her asking someone else if flour is really made from wheat. I swear, I couldn't make this stuff up. It almost seems funny now, but I wasn't laughing then.

"They can't even crack open a couple of eggs?"

2009-01-02T18:17:00.001-08:00

Well, we're back from our visit to Rhode Island. All in all it was a good visit; however, eating in restaurants all week was a real challenge. I know I'll never step foot in a Cheesecake Factory again. We had been trying to find a place to eat on New Year's Day that could accommodate Becca's GFCF diet, as well as my vegan son, vegetarian sister, her two foodie kids, and a few meat and potato eaters. I had spent a good part of New Year's Eve checking out menus online. I saw that the Cheesecake Factory served breakfast all day and figured I could order eggs and bacon for Becca. I was wrong. The server told me the egg batter had been mixed that morning and that there was sour cream in it. I asked if they could just scramble a couple of eggs separately for her. No, they couldn't do that. She was adamant. Do they even have eggs in restaurants anymore, or is it just that frozen pre-mixed batter? That's not real cooking. The thought of it sitting there all day was gross. Seriously, there was not one thing on the menu that Becca could eat. ALL of the salad dressings and seasonings contain gluten. The fries are cooked in the same oil as other breaded products. Even the applesauce contained some seasoning that had gluten in it. The server said they get questions about gluten all the time. If so, why can't they come up with one or two menu items that are safe? How hard would that be? Oh yeah, it might require cooking, and apparently restaurants don't do that anymore. Becca ended up with a plain, dry, unseasoned grilled chicken breast. Yum.

I'm going to be honest. We had already cheated once on the diet during the vacation. It was the only time we had ever deviated from the diet. We didn't have any ill effects, but I was not going to make a habit of it.

We're not having much fun with this diet right now. When we got home from the trip I started going through emails. Earlier in the week I had responded to a birthday party invitation a friend of mine had sent Becca. I had let her know I would be bringing a GFCF snack for Becca. This was the email response.

"I'm sorry Becca won't be able to partake of the refreshments at the party, and I hope she won't be too disappointed. No outside food is allowed except for the cake, which of course contains wheat."

Can she be serious? I'm supposed to bring my daughter to a party where they will be serving food she can't eat, and she's supposed to watch the other kids eat and NOT be TOO disappointed? That's torture! We've always brought GFCF pizza and cookies to parties, and while Becca wasn't thrilled with it, at least she had something to eat. I consider this woman a good friend, but I'm afraid it's one more person who just doesn't get it. I am sure she didn't even bother to ask if an exception could be made for a child with food allergies/sensitivities. Now I don't know what I'm going to do. Becca wants to go to the party. It is rare that she gets invited to parties. But I think it's just mean to expect her to not be allowed to eat anything. Seriously, what the hell is wrong with people?

New Year, new beginning and all that stuff...

2008-12-31T19:05:00.000-08:00

New Year's Eve has never been my favorite holiday. I tend to think too much about where I thought I'd be by this time. This is especially true since autism came into the picture. Every year I've thought this would be the one when we'd reach recovery. Becca's getting older and I keep thinking we're losing precious time. But then, I have to think about all the wonderful changes that have occurred this year. GFCF is bringing about improvements, Becca has had several little language explosions, and we're getting much better services and therapies. We're also no longer dealing with our school district! Getting her out of the school system was probably the greatest change we could ever make.

Right now we're enjoying a mini-vacation, visiting my family in Rhode Island, and as far as vacations go it's not too bad. OK, it's New Year's Eve and we're snowed in, but it could be worse. The hotel room is comfy, and I consider booking the hotel rather than actually staying with family a real sanity-saver. Becca will never tire of the hotel pool, and I've enjoyed the hot tub. Yesterday we went out to breakfast, went ice skating, and saw a beautiful Christmas light display. Sounds almost like a regular vacation, right? Well.....

Will we ever be able to go to a restaurant and not ask to see ingredient labels before ordering something as simple as a hamburger? Will we always have to explain what gluten is and how cross-contamination occurs? It's not so bad when it's just Ron, Becca, and myself. But we're visiting family and friends here, and we are constantly explaining to them why we can't eat in certain restaurants. Then there is the issue of Becca's stamina. We can't always make plans in advance because we don't know how much Becca will be able to do. Ice skating had to be cut short after just a half hour because that's all she could handle. Ron and I are used to this. We enjoy what we can and make the accommodations Becca needs. But this is no fun for the rest of the family. This has happened on so many visits here, and not everyone gets it

I also feel my son is getting short-changed. James is twenty-five, and he really does understand Becca and her needs, but I can't help feeling this isn't fair to him. I know it would be worse if they were close in age and he had to experience this on a daily basis. He's an adult and has his own life, but I would still like to be able to be there for him and also spend time with him without autism always being our main focus. I find it hard to even have a conversation with him or with anyone without autism and Becca's needs being brought into it. And it's not just when we visit him here. When he comes home for a visit he finds a home that is centered on Becca's needs. I can't cancel all of her appointments. He will come along with us to speech or OT. Not once has he ever complained, but it can't be much fun for him. Maybe I wouldn't feel like this if he hadn't been through so much in his own childhood. His early years were so traumatic. Maybe that's why I still feel he needs some undivided attention even though he's an adult. He was still a teenager and living at home, struggling with his own issues, when we first started getting services for Becca. I found it so hard then to meet the needs of both a teenager and a baby with complex needs, so maybe I'm still feeling some guilt over that.

At least James does understand. I can't always say that for everyone in our life. There are those that avoid spending time with us. We're probably not much fun to be around. There are others who are disappointed in us because we are not meeting their needs, being supportive of them, etc. I guess New Year's is as good a time as any to take a good hard look at the relationships in my life and really think about what is healthy for my family so that we can move forward. I have to stop putting myself in situations with people where I'm constantly walking on eggshells. Ron and I have talked about this at length and we know we have to make changes. I have to stop pretending that everything is normal and that I can do everything and meet everyone's needs when we really have almost no real support. For my family's well-being and my own sanity, this is one New Year's resolution I can't afford not to keep.

Long before Becca......

2008-12-28T14:04:00.000-08:00

I had adopted James, my now twenty-five-year-old son. I was twenty-four and single when I got custody of him. He had just turned three but had been spending weekends (and longer) with me and with other members of my family for over a year. For reasons I won't go into, I had been feeling protective towards him even before he was born, and somehow I always knew he would be my son. I am not a person who wants to take children from their parents. But James needed to be adopted, and I wanted him. The adoption process took nearly three years.

Parents who want to recover their children from autism are often accused of not being able to accept a "less than perfect" child. Those aren't my words, because in my eyes my children really are perfect. This is the crap that we parents get thrown at us when we want to recover our children from a devastating medical condition. It couldn't be more untrue. Before I adopted James, he was developmentally delayed and appeared to have signs of autism. In fact, before he came to live with me he seemed to be more likely to be on the spectrum than my daughter ever was. He had very few words and would sit silently all day playing with his shoes. When held, his arms would hang limply at his side. I knew so little about autism then. My brother-in-law, a psychology major, observed him and thought he showed all the signs. That made no difference to me. I wanted to adopt him. It was my choice. As it turned out, James did not have autism. He had suffered unspeakable abuse at the hands of his biological mother. For three years he had been living a nightmare. I don't pretend to be a perfect parent by any definition. I made countless mistakes. However, when removed from the abusive situation, he did thrive, and with the care and the therapy he needed, he recovered to the extent possible when one experiences something so traumatic. It has not been easy for him. But at twenty-five he has graduated from college, works in a psychiatric hospital, and is a caring, thoughtful individual who is a wonderful son and friend, a person who gives back to the community. I am immensely proud of him!

I was a single parent until James was twelve, when I met Ron. At that point I had had enough failed relationships to make me not even believe in marriage. I had finally gotten to the point where I was happy to be single. I figured I would eventually adopt another child. But Ron and I became friends, and it wasn't long before I decided I was going to marry him. First I had to get him to at least ask me out on a date. Once that was accomplished, things moved quickly. We knew within a couple of weeks that we would be married. It was important to me that he wanted to adopt James and that he wanted more children. We were married the following year, in a big church wedding followed by a reception that was so much fun, our friends are still talking about it almost twelve years later. He and I had both experienced our share of hurt and loneliness, and it seemed that it was all behind us. We had so many dreams, all within the realm of possibility. I don't think we were being unrealistic, but we had no idea how our life would be turned upside down.

Almost as soon as we got married we wanted to have a baby. I knew I might have difficulty getting pregnant, but I wasn't prepared for the heartache of infertility. It was difficult to pursue fertility treatments because Ron was retiring from the Navy and we were getting ready to leave Rhode Island and move to New Jersey. Once settled in New Jersey, I found a fertility specialist, and after just one cycle of Clomid I was pregnant!

All mothers have dreams for their children, but when thinking of my baby's future I couldn't help but think of my son's past. I knew my baby would never have to suffer the way James had. She would be raised with so much love. I just assumed she would always be happy and content because she would be surrounded with love. I felt more prepared to be a parent this time around, being so many years older than I had been when I adopted James. I felt like I had dealt with a lot of baggage in my life and was a better and more patient person. And there was a certain self-satisfaction in thinking I was doing everything right. I think I was guilty of feeling a little smug. I thought if I ate right, took my vitamins, and got good prenatal care, I'd have a perfectly healthy baby. Before she was born I interviewed a pediatrician. I knew I would be the kind of parent who read all the baby books and would never be late with well-child visits and vaccines. I was determined to be the perfect mother!

Pregnancy was difficult. We decided the move to New Jersey had been a mistake and couldn't wait to leave. Ron had retired from the Navy and was not happy with his new career. James, now fifteen, was dealing with serious depression. Back in Rhode Island, my mother was showing signs of Alzheimer's. We moved to Pennsylvania just one month before Becca was born. I was not close to my in laws at that point, and all of my family and friends were in Rhode Island. I felt terribly lonely and isolated. It was a stressful time for us as a family, but I felt everything would be OK once Becca was born.

My new obstetrician in Pennsylvania didn't seem concerned when I went ten days past my due date. The nurse practitioner in the practice wouldn't even let me see the doctor and didn't listen when I said I couldn't feel the baby move anymore. I had Ron take a day off work and go with me to see the doctor because I figured they would listen to him. They did. What's more, the doctor looked at the results of the non-stress test and sent me to the hospital for another test. In the meantime, we had had another ultrasound, and it showed little amniotic fluid and a deteriorating placenta. I was furious at the doctor for letting me go so far past my due date. When I got to the hospital they admitted me right away with the intention of inducing labor. But after running some more tests it showed Becca's heart rate had dropped, and the doctor had to do an emergency C-section. I was terrified that I was going to lose my baby right then and there. I remember thinking we had come all this way and I was so in love with my unborn baby, and now I was going to lose her. The doctor assured me my baby was going to be fine but couldn't go through a long labor and that was why she had to do a C-section. I calmed down a little and started to realize that at long last I was going to see my little baby girl.

Becca was born on September 15, 1999, at 1:26 AM. When I first held her she was extremely alert, eyes wide open looking right at me. She latched on and nursed right away with no difficulty. I felt such a sense of relief. She seemed perfectly healthy. I don't remember much else about that night other than being completely exhausted, and too excited about my new baby to sleep much. Ron and I spent most of the night talking about her.

I have no recollection of ever signing permission for a Hepatitis B shot. Maybe I did, but I don't remember doing so. Becca spent part of the morning in the nursery, and when she was brought to me she was fussy and unable to sleep. I didn't think that was unusual for a new baby, but I was disturbed by the fact that she now had difficulty nursing. There had been no problem at all right after she was born. We struggled with it throughout my hospital stay. The lactation consultant said I was doing everything right. But we just couldn't get her to stay latched on. I was frustrated by the long hours she had to spend in the hospital nursery every morning. Instead of taking each baby in there one at a time to do whatever it is they do in there, they would take all the babies at once and wouldn't bring them back until they were done with all of them. I asked to leave the hospital a day early so that we could get into a regular nursing routine at home. But it wasn't any better at home. To make a long story short, she lost more than ten percent of her birth weight and became so weak that the pediatrician said I had to supplement with formula. She couldn't tolerate milk-based formula and we quickly switched to soy. She became stronger, gained weight, and very quickly became the alert wide-eyed infant I had held the morning she was born.

Becca met some of those early milestones right on time. She held her head up quite early and seemed very aware of her surroundings. Very early on she started babbling and cooing. She loved to interact with us. It was easy to entertain her. She laughed when we did silly things. She seemed to be trying to talk directly to us when she was amused by something.

Two things concerned me. One was that she was very gassy and often seemed uncomfortable after feedings. The other concern was that she hated being placed on her belly. Other than that, I didn't see anything that concerned me in those early months.

I can't say I saw major changes after the vaccines. But when I look back at her records and how they coincide with her development, I can see where she started to regress with each vaccine. It seemed there was a cumulative effect,with the most significant, yet still rather subtle, changes taking place after the DTaP. When she was about eight or nine months old I was concerned that she wasn't crawling like a lot of other babies. But I was told some babies never crawl. She could remain sitting up if placed in a sitting position, but she couldn't pull herself into that position. By one year she wasn't pulling herself up to stand, and she wasn't even close to walking. Her one word was dada.

I made the mistake of scheduling her one-year visit right on her birthday. It wasn't the kind of day when you want to hear bad news. The pediatrician wanted her to have a developmental evaluation, as she was behind in her motor skills.

It took three months to get an appointment with the developmental pediatrician. It was at that visit that we got a diagnosis of global developmental delay. We started early intervention services right away. Becca made great progress, but I had no idea that the services were not nearly enough. I had never even heard of ABA or Floortime back then.

There's so much more, but that's basically the beginning of her story. She's now nine years old, and my entire world revolves around her and her recovery. I hope someday I will be writing that she truly is recovered. That is my greatest dream!

Well, it's not a death sentence.....

2008-12-28T06:55:00.000-08:00

That's what I kept telling myself when we got the diagnosis. If you have a child on the spectrum then you know all the emotions, the shock, the denial, the sense that you knew all along that you'd be hearing those words. It wasn't like we were totally unprepared. We'd had an earlier diagnosis of global developmental delay. The developmental pediatrician had even discussed the possibility of an autism spectrum disorder, but had hesitated to label it as such since Becca was improving so much and making progress. I remember anticipating that visit to the doctor. Becca was three years old and had started preschool. It had been a few months since the doctor had seen Becca, and I was just so sure that she would see even more progress and forever put to rest any concerns about the possibility of autism. Instead, I learned just how far behind Becca was in all areas of development, just how "atypical" she was in language and socialization, and how she did indeed meet the criteria for a diagnosis of PDD-NOS. My heart was just sinking as I broke the news to my family. My husband Ron had not been at that visit with the pediatrician, as we had thought it was just going to be a typical well-visit with the pediatrician and I hadn't wanted him to take time off from work. He was less prepared for the diagnosis than I was. I felt like I was dropping a bomb on him. Then I had to tell our son, who was eighteen at the time and going to school out of state. My entire extended family was in Rhode Island at the time. My in-laws lived less than an hour away in Philadelphia, but I have to say I didn't feel we really had any support at that time. To some extent that has changed, but our family is complicated, and this has been a journey for all of us. Some are more on board than others. Some remain totally clueless and are either uninvolved or choose to judge us without any real knowlege of autism and what this means for our family.

It's not a death sentence......

Those are the words I kept saying to myself as I came to grips with the diagnosis, and to others as I broke the news to them. In a way I was trying to tell myself it wasn't so bad, it was "only" PDD-NOS, not full-blown autism, and that she was going to be just fine. I also felt I had to downplay it with my inlaws, who also kept insisting she was going to be just fine. Some even thought the doctor was just plain wrong. At that time, it just wasn't an option to pour out my heart and reveal my fears and feelings of despair.

But there was more to it than that. At that time I didn't have the words to express to anyone, even myself, but I just wasn't going to accept autism. It was not going to define my daughter's life. I was going to get my baby back. I would stop at absolutely nothing. And that is where we are today. Neurodiversity people, be warned! I'm another one of those mothers you just hate. My little girl was NOT meant to have autism. It does NOT define who she is, and it is NOT going to be her life and her future.

It's not about accepting my daughter for who she is. I actually love my daughter for who she is, an adorable, sweet, caring, empathetic little girl. I love her imagination, her creativity, and her sense of humor. Autism is not who she is. Autism is what she has, a medical condition that has brought her incredible physical pain, daily struggles, frustration, and isolation. It has made her the object of disdain and rejection. You neurodiversity people think autism is so wonderful? Glad you're enjoying it. For my daughter, it just plain sucks! Keep your autism if you love it so much, but my daughter would gladly leave hers behind, and she has told me so herself.

Earlier this year we got an "upgrade" in diagnosis. The psychologist who did a neuropsychological evaluation felt that high-functioning autism was a more appropriate diagnosis. I agree with that. But I don't think the earlier diagnosis was incorrect. It was most certainly accurate at the time. Becca has made tremendous progress. We still have a LONG way to go. And by the way, high-functioning autism is no walk in the park. Becca struggles. We struggle. Because she has some language skills and cognitive strengths, much is expected of her. People don't understand her difficulties with comprehension or her inability to always control her behavior. Any autism spectrum disorder is life-changing and significant. But I believe with all my heart that full recovery is very possible. A very well-known and respected behavior therapist recently came to our home to do an FBA. She said when she first spoke with Becca she would have thought Becca had Asperger's Syndrome. But within just a few minutes Becca's language deficits became very apparent. So there is much work to be done. We've made a lot of changes this year. Becca is now educated at home through a cyber charter school. She gets far more services than she did while in public school, and the services are more intense and of better quality. We have changed her diet and are pursuing a different direction through biomedical approaches. I feel more hopeful than ever. I envision Becca someday telling me what it was like back when she "had" autism. I see it happening. Autism is not going to have my little girl forever.