TAP class has been wonderful for Tallie. She is very stubborn and has her momments, but overall I can tell she really likes it. It is a very structured class room setting were they do a lot of picture/word associations. Everyday that I bring her they meet her outside of the classroom with a picture of a backpack and then walk her to her little cubby hole so she can hang up her coat and back pack. Then they go straight to the music area where they sing the hello song and play with musical instruments. There is a house area that she loves. This is where they work on the pretend play. The school is attached to a day care facility, so everyday they take a walk over to what's called educare and they go down a slide and do other fun activities that are modeled by children in the daycare facility that have excellent communication skills. They then come back to the classroom and have a snack. Each child has their own color, Tallie's is pink. Her cubby hole is pink and so is her place mat for snack time. It helps them know where they are supposed to go. There is also a 1on1 teach area where they sit down with the kids and practice following directions and playing with toys appropriately. One of the things with Autism is that normally difficult tasks can come very easily, but the simpiler tasks can be much harder to accomplish. This helps to make sure they cover all grounds.
One of the great things about TAP for me, is that while Tallie is in the classroom I get to sit in a room along with the other moms and Lori, a speak pathologist, and talk about what we are going through and ask questions about the things we don't understand. We can also peek into the classroom at any time and see how our kids are doing.
All together there are only 5 kids in the class, Tallie being the only girl. The first day of class however, there was only Tallie and one other little boy. It was both their first day. I felt for the other mom, she was really emotional and having a hard time holding back tears. I wanted to tell her to just let it all out, I would totally understand. It was her only child and it brought back memories of how I had felt dropping Morgan off at school for the first time last year. I felt really anxious but also really excited that Tallie was getting this help and couldn't wait to hear about how the program worked.
My mom came with me with was nice to have a support system there. The three of us sat there and listened to Lori talk about the program and answer some questions we had. We occasionally peaked in to see how the two were doing. For it being their first day, they seemed to be doing really well. There were a few crys from the little boy, but Tallie mostly just whined in protest on occasion. Have I mentioned that she is very stubborn! I was holding it together just fine until the other mom asked what caused Autism and if there was something during birth that might have happened to cause this. Lori just looked at her and said, "You did not cause this." Everyone in the room started crying at the point except for Lori.
I guess I had a lot of guilt built up that I hadn't dealt with. Anyone that knows Tallie would probably say that she would be in the running for the easiest baby award. She was always so content and laid back and happy. I think because of this I felt as though a lot of my focus over the past 2 years had been on my older daughter Morgan. Morgan thrives on attention and will do just about anything to get as much as she can. I love that she has such an outgoing personality, but I guess I had been feeling guilty about not giving Tallie as much attention. I knew that I hadn't caused Tallie to have Autism, but at this point I was convinced that it was just a language delay and I thought that maybe if I had spent more time with Tallie that maybe she wouldn't be having these problems.
Thursday, March 18, 2010
Denial
I think this whole time I was in total denial of the whole thing. I thought it was crazy that they could diagnose a 2 year old with autism. How could they tell the difference between goofy things that normal 2 year olds do and things that would be signs of having autism. To me they all seems pretty similar. I never denied the fact that Tallie had a language delay, but I truly believed that was all it was. Up until I started taking Tallie to her TAP class and sat with other moms and talked about things their kids do that were the same kinds of things that Tallie does. I started reflecting a lot about how could I have missed all these signs. Shouldn't I as her mother have been the first one to have concerns about her, not the last one. I guess the only conclusion that I came to was that being around Tallie all the time, her little goofy things she did just became "normal" to me. Or it was just her personality and I think I made excuses for everything.
Most of the things she did that ended up being signs of autism were the things that I thought were so cute that she did. One thing in particular is that she always likes to have 2 of the same thing in each hand. A lot of the time it was little people or baby dolls. She would hold one in each hand and act like they were talking to each other and have them give each other kisses. I found out later that it's a way of making her feel safe in her environment, holding something in each hand. This can actually prevent her from learning how to play with toys appropriately. If she always has something in each hand, it's hard to pretend how to just take care of one baby doll. To feed it, to rock it and take it for a ride in a stroller. Things that she never does.
There were so many things that were pointed out to me that she does that are signs of autism that I finally realized that this was it. She really was autistic and I as her mother needed to snap out of denying it and start facing reality, making sure I was doing everything I could to help her overcome some of the hurdles she was facing.
Most of the things she did that ended up being signs of autism were the things that I thought were so cute that she did. One thing in particular is that she always likes to have 2 of the same thing in each hand. A lot of the time it was little people or baby dolls. She would hold one in each hand and act like they were talking to each other and have them give each other kisses. I found out later that it's a way of making her feel safe in her environment, holding something in each hand. This can actually prevent her from learning how to play with toys appropriately. If she always has something in each hand, it's hard to pretend how to just take care of one baby doll. To feed it, to rock it and take it for a ride in a stroller. Things that she never does.
There were so many things that were pointed out to me that she does that are signs of autism that I finally realized that this was it. She really was autistic and I as her mother needed to snap out of denying it and start facing reality, making sure I was doing everything I could to help her overcome some of the hurdles she was facing.
The diagnosis
The official diagnosis came in the form of 4 ladies coming out to my house to talk to me about how Tallie did with the evaluation. There was the school psychologist, the speech pathologist, a special education teacher and a lady who is in charge of the autism program for the Omaha Public School system.
They all came into my home and sat down and proceeded to talk to me about the signs that Tallie displayed that made them believe that she falls on the autism spectrum. Some of the things that they pointed out were that she walked on her tip toes, she doesn't point to things she wants or is interested in, there is a lack of eye contact, she has a speech delay, she doesn't follow a two step command, she doesn't display joint attention and so on. Some of these I thought were a little crazy, for example, the walking on her tip toes one. My oldest daughter did that when she was Tallie's age a lot more then Tallie has ever done. So I asked them about that. They told me that it wasn't just one of the things, it was the combination of all of the things she was doing that made her fall on the autism spectrum.
That's the other thing that I have learned. There is a whole autism spectrum and there are no two kids that are exactly alike. Some kids are more highly functioning than others and some have issues that others don't have at all. There are also several different types of autism. It has been mentioned that Tallie is highly functioning, but no one will go into that much detail about it. I think partly because of her age and also because this is an educational diagnosis, not a medical diagnosis which I learned more about later.
So from here they recommended that Tallie be enrolled in a Toddler Autism Program (TAP). This is a school setting that meets on Monday and Wednesday mornings for 1 1/2 hours. This goes through the summer and then in the fall she can start preschool that will go 5 days a week for 2 1/2 hours long.
I was on board, sign us up. I wanted to do anything I could to help Tallie start talking. I think at this point I just wanted her to start talking and prove everyone wrong. That she wasn't autistic, she just had a language delay.
They all came into my home and sat down and proceeded to talk to me about the signs that Tallie displayed that made them believe that she falls on the autism spectrum. Some of the things that they pointed out were that she walked on her tip toes, she doesn't point to things she wants or is interested in, there is a lack of eye contact, she has a speech delay, she doesn't follow a two step command, she doesn't display joint attention and so on. Some of these I thought were a little crazy, for example, the walking on her tip toes one. My oldest daughter did that when she was Tallie's age a lot more then Tallie has ever done. So I asked them about that. They told me that it wasn't just one of the things, it was the combination of all of the things she was doing that made her fall on the autism spectrum.
That's the other thing that I have learned. There is a whole autism spectrum and there are no two kids that are exactly alike. Some kids are more highly functioning than others and some have issues that others don't have at all. There are also several different types of autism. It has been mentioned that Tallie is highly functioning, but no one will go into that much detail about it. I think partly because of her age and also because this is an educational diagnosis, not a medical diagnosis which I learned more about later.
So from here they recommended that Tallie be enrolled in a Toddler Autism Program (TAP). This is a school setting that meets on Monday and Wednesday mornings for 1 1/2 hours. This goes through the summer and then in the fall she can start preschool that will go 5 days a week for 2 1/2 hours long.
I was on board, sign us up. I wanted to do anything I could to help Tallie start talking. I think at this point I just wanted her to start talking and prove everyone wrong. That she wasn't autistic, she just had a language delay.
The Evaluation
The evaluation consisted of two different visits. The first visit was with a school psychologist who came out with an assessment that had a long list of questions that she asked Jeff and I about Tallie. You think you know your child pretty well until someone starts asking you all kinds of questions. It's hard to come up with all of the words that Tallie has ever said on the spot like that. It's hard to know how to answer the question, "How does Tallie let you know when she wants something to drink?" I don't know, I'm her mom, I just know.
At the end of the evaluation she asked if we had any questions and I asked her what her initial thoughts were from just our answers. She said that she did have some initial concerns, but that she'd be able to have a better feel for things after the second visit.
The second visit was with the same school psychologist and a helper. They brought out a backpack of toys to test Tallie with. They were testing to see how she would react and interact with the toys. She started off well, I thought, but I wasn't exactly sure what they were looking for. Then they started asking her to do more "pretend play" with a baby doll and having a birthday party. She wasn't really doing anything they wanted her to and that theme seemed to continue throughout the rest of the visit. It was so frustrating to watch. I wanted so badly to step in and try and help her, so that she would "pass the test". I had a bad feeling and was choking back tears when I asked at the end of the visit how she thought it went. She told me that she would have to wait to give me an official diagnosis after all the scoring was done, but that she found it very likely that Tallie would fall on the autism spectrum.
At the end of the evaluation she asked if we had any questions and I asked her what her initial thoughts were from just our answers. She said that she did have some initial concerns, but that she'd be able to have a better feel for things after the second visit.
The second visit was with the same school psychologist and a helper. They brought out a backpack of toys to test Tallie with. They were testing to see how she would react and interact with the toys. She started off well, I thought, but I wasn't exactly sure what they were looking for. Then they started asking her to do more "pretend play" with a baby doll and having a birthday party. She wasn't really doing anything they wanted her to and that theme seemed to continue throughout the rest of the visit. It was so frustrating to watch. I wanted so badly to step in and try and help her, so that she would "pass the test". I had a bad feeling and was choking back tears when I asked at the end of the visit how she thought it went. She told me that she would have to wait to give me an official diagnosis after all the scoring was done, but that she found it very likely that Tallie would fall on the autism spectrum.
Speech Therapy
I’ll admit I was not on board with this from the beginning. I didn’t really think it was necessary. I just figured Tallie would start talking when she was ready and that it was not a big deal that at 18 months she had said only a few words. I was trying to be a “good mom” though and half heartedly went along with it. The first teacher that we were assigned to was very nice, but all of the things she wanted me to do seemed so forced and unnatural. I found it very hard to remember to do them when she wasn’t there. She wanted me to put a one word association with everything Tallie did or touched. So anytime she picked up a ball, I was supposed to look at her and say “ball”. If I was pushing her on the swing set, I was supposed to say “swing”. It was hard for me not to say, “Tallie, do you have a ball?” Or “Tallie is this fun swinging?” I had to try and use only one word instead of just talk to her like I normally would. I was also supposed to use the word “more” as a question and wait to get some type of response from Tallie before I could give her what she wanted. This was very hard to do. I do not like to see my kids cry and this activity made Tallie furious. How was I supposed to keep my cool knowing that I was upsetting my daughter, which by the way was unnecessary right? She would figure it out on her own eventually so why was I putting her and myself through this. So that’s when I decided to take the summer off.
At the end of the summer a different teacher called me and said she was assigned to my area now. So I reluctantly agreed to set up a time for her to come. I found that I connected with this lady a lot more than the first teacher and didn’t necessarily mind having her come over. She wasn’t as forceful as I felt the first teacher had been and she would constantly says how great and beautiful Tallie is, what mother doesn’t want to hear that about their child? She continued to come about every week or every other week until about a month after I found out I was pregnant. I was pretty sick and had to cancel on her quite a bit because I just didn’t feel up to having someone come over to my house. When I finally started feeling better we resumed our visits on a weekly or biweekly basis. About this time, I started thinking about Tallie and now that she was almost 2 ½, I started becoming a little concerned that she still wasn’t saying much. When all this started, I had thought for sure that by the time she was 2, I would see a big improvement. I talked to my mom about it and she also seemed a little concerned so I decided to mention it to her teacher. She almost sounded relieved that I had brought it up and she kind of blurted out that if I wanted we could re-test her for Autism. I was really surprised by this. I wasn’t saying that I was concerned that she was Autistic, hadn’t we already determined that she wasn’t? I was just concerned that her language was delayed. I decided to go along with a second evaluation, again just to rule it out.
At the end of the summer a different teacher called me and said she was assigned to my area now. So I reluctantly agreed to set up a time for her to come. I found that I connected with this lady a lot more than the first teacher and didn’t necessarily mind having her come over. She wasn’t as forceful as I felt the first teacher had been and she would constantly says how great and beautiful Tallie is, what mother doesn’t want to hear that about their child? She continued to come about every week or every other week until about a month after I found out I was pregnant. I was pretty sick and had to cancel on her quite a bit because I just didn’t feel up to having someone come over to my house. When I finally started feeling better we resumed our visits on a weekly or biweekly basis. About this time, I started thinking about Tallie and now that she was almost 2 ½, I started becoming a little concerned that she still wasn’t saying much. When all this started, I had thought for sure that by the time she was 2, I would see a big improvement. I talked to my mom about it and she also seemed a little concerned so I decided to mention it to her teacher. She almost sounded relieved that I had brought it up and she kind of blurted out that if I wanted we could re-test her for Autism. I was really surprised by this. I wasn’t saying that I was concerned that she was Autistic, hadn’t we already determined that she wasn’t? I was just concerned that her language was delayed. I decided to go along with a second evaluation, again just to rule it out.
The first mention of Autism
I was at the pediatrician’s office for Tallie’s 18 month well visit check up. We had been waiting in the examination room for just about an hour, it was almost lunch time and my girls were acting like they were about ready to lose their mind. Their doctor finally comes in and starts complaining about the previous appointment. He acted very irritated and was even rolling his eyes about it. I was annoyed that he didn’t even apologize to us for keeping us waiting for so long and thought it was unprofessional of him to be talking about another patient's visit like that.
Within 10 minutes of being in the room he basically wanted to diagnose Tallie with Autism. It started with him asking questions about her language. Up to this point Tallie hadn’t said a whole lot, but I really hadn't been that concerned. I thought it was actually pretty normal with her having an older sister who was very outgoing and demanded a lot of attention.
So the doctor started asking me questions like, does she get really upset by loud noises or different textures. I said, no she doesn’t. He asked if she waves good-bye or responds to her name and I said, no she doesn’t. He asked if she would follow a two step command, like if I threw a ball and told her to go get it and bring it back to me would she. I thought to myself, well she’s not a dog I guess I haven’t tried playing fetch with her. He then proceeded to throw a toy and asked her to go get it. Not surprisingly, she fell to the floor and started throwing a tantrum. I thought that was pretty normal that an 18 month old would be irritated after spending over an hour in a small room and probably getting pretty hungry at this point. Her doctor however thought it was very concerning that she wasn’t looking at us to see if we cared that she was throwing a fit. It was at this point where he said that he had definite concerns about Tallie showing signs of Autism. He said, hopefully I’m completely wrong in a couple of years and we can look back and laugh at this. Meanwhile I am doing everything I can not to completely loose it and start bawling like my 18 month old was. He told me to contact the school’s special education department and to have her evaluated and then he left the room. After that I had to hold back the tears for another 5 minutes while Tallie got two shots. As soon as that was over with, I grabbed my things and my girls as fast as I could and felt the tears forming as I pretty much ran out of there. I remember calling Jeff and calling my mom on the way home, trying to explain what happened while completely sobbing over what had just happened. I was in such a state of shock. I thought I was just taking my 18 month old in for a well visit and I left with the mention of Autism from a doctor who obviously failed the course on how to use good bedside manner when delivering shocking news to a family.
Over the next few weeks I spoke to several family members and friends who knew Tallie very well. All of them said they thought it was crazy. They hadn’t noticed any behaviors from Tallie that would make them think that she might be Autistic. They all thought it wasn’t a big deal that she wasn’t saying a whole lot yet. Many of them talked about how much she likes other people, how she loves to cuddle and how happy and laid back she is. This made me feel a lot better. I needed reassurance that I, as her mother, hadn’t completely missed all the signs that were so apparent to her doctor during the visit.
I did want to be 100% positive about it though. So I called the school and had them come out and do an initial evaluation on Tallie. They said they didn’t have any concerns about Autism but thought she was behind in her communication skills and recommended starting her on speech therapy. This kind of took me by surprise, just because she was so young. I just wasn’t sure it was necessary, but I also knew it wouldn’t hurt. So I did decide to start doing that. I also took her to Children’s hospital and got her hearing checked, that checked out fine as well. Mostly I was just happy that it seemed that autism was not an issue.
Oh and I found a new pediatrician for my kids as well. I am very grateful to have found Dr. Krenzer. She has been such a positive change and a great support through all of this.
Within 10 minutes of being in the room he basically wanted to diagnose Tallie with Autism. It started with him asking questions about her language. Up to this point Tallie hadn’t said a whole lot, but I really hadn't been that concerned. I thought it was actually pretty normal with her having an older sister who was very outgoing and demanded a lot of attention.
So the doctor started asking me questions like, does she get really upset by loud noises or different textures. I said, no she doesn’t. He asked if she waves good-bye or responds to her name and I said, no she doesn’t. He asked if she would follow a two step command, like if I threw a ball and told her to go get it and bring it back to me would she. I thought to myself, well she’s not a dog I guess I haven’t tried playing fetch with her. He then proceeded to throw a toy and asked her to go get it. Not surprisingly, she fell to the floor and started throwing a tantrum. I thought that was pretty normal that an 18 month old would be irritated after spending over an hour in a small room and probably getting pretty hungry at this point. Her doctor however thought it was very concerning that she wasn’t looking at us to see if we cared that she was throwing a fit. It was at this point where he said that he had definite concerns about Tallie showing signs of Autism. He said, hopefully I’m completely wrong in a couple of years and we can look back and laugh at this. Meanwhile I am doing everything I can not to completely loose it and start bawling like my 18 month old was. He told me to contact the school’s special education department and to have her evaluated and then he left the room. After that I had to hold back the tears for another 5 minutes while Tallie got two shots. As soon as that was over with, I grabbed my things and my girls as fast as I could and felt the tears forming as I pretty much ran out of there. I remember calling Jeff and calling my mom on the way home, trying to explain what happened while completely sobbing over what had just happened. I was in such a state of shock. I thought I was just taking my 18 month old in for a well visit and I left with the mention of Autism from a doctor who obviously failed the course on how to use good bedside manner when delivering shocking news to a family.
Over the next few weeks I spoke to several family members and friends who knew Tallie very well. All of them said they thought it was crazy. They hadn’t noticed any behaviors from Tallie that would make them think that she might be Autistic. They all thought it wasn’t a big deal that she wasn’t saying a whole lot yet. Many of them talked about how much she likes other people, how she loves to cuddle and how happy and laid back she is. This made me feel a lot better. I needed reassurance that I, as her mother, hadn’t completely missed all the signs that were so apparent to her doctor during the visit.
I did want to be 100% positive about it though. So I called the school and had them come out and do an initial evaluation on Tallie. They said they didn’t have any concerns about Autism but thought she was behind in her communication skills and recommended starting her on speech therapy. This kind of took me by surprise, just because she was so young. I just wasn’t sure it was necessary, but I also knew it wouldn’t hurt. So I did decide to start doing that. I also took her to Children’s hospital and got her hearing checked, that checked out fine as well. Mostly I was just happy that it seemed that autism was not an issue.
Oh and I found a new pediatrician for my kids as well. I am very grateful to have found Dr. Krenzer. She has been such a positive change and a great support through all of this.
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