"EH" - "EH" - "EHHHHH" this is the sound you can hear from my 15 month old throughout the day. Does he want food? Does he want to sleep? Does he want a toy? What is it that he wants? I can tell you on most days I lose a little bit of the patience that I have built up over time. "What do you want!?!?!"
It is like when you brought your newborn home. Every sound that new precious package made you soon found out meant food, sleep, bond time, playtime. I feel this 15 months later. Like I am trying to guess what every cry or sound means. The problem lies in the fact that my little man has specific wants now. He wants "that" toy or "that" thing to eat. It's a guessing game - a long, long, long guessing game. Eventually you will get what he wants but it takes a while - or he just gives up on you.
So many of you may be saying "well, Melissa, come on he is only 15 months". I respond by saying that that is what we told ourselves about Abby for the longest time. Well she is only 18 mths, she's only 2 year, she's only 3. When does it end?? I refuse to play that game. Andrew is trying to tell us what he needs - but all that is coming out is that he needs something.
Finger pointing - thats what I want!! I want him to point to what he wants. Point to what he needs. This most children do at this age - but expressively, Andy does not use this communication skill.
The state we live in offers an early development program called Birth to 3. Given that Abby has CAS we thought that we should have Andy evaluated. Just before Andy turned 15 months B23 came to evaluate Andy for any developmental concerns. There are many areas of concern regarding Andy. After Andy's 15 month check up with the pediatrician they are also concerned about Andy's development.
Most of the concerns regarding Andrew are the following:
In Communication:
Slightly below average in Receptive Language: this is the understanding of language that others speak
Significantly below average in Expressing Language: this is is the language that an individual uses to make verbalizations and to use words.
In Adaptive (self - Help) - this addresses eating, dressing, toileting and personal responsibility.
Andy was assessed to be significantly below average.
The plan?? Well we have a few more tests to have done on Andy - a Oral Motor Control test and a hearing test. However, the group found Andy significantly behind and therefore will start working with us (Andy & his family) on adaptive and communication issues.
Andy's service coordinator and I spoke at length yesterday about what the needs of Andy and the needs of his family is at this point in time. The biggest thing is the ability to communicate. Although CAS is not diagnosed until much later - there was talk about how the areas specific to his delays are also areas of delay in children with CAS. Because of that - the first thing we will try is getting Andy to point to pictures. The other goal is to introduce signing. Andy will start receiving services in 2 weeks. We are hoping that we can at least get Andy to start gesturing.
Until then we will try our best to understand "EH".
Friday, August 5, 2011
Thursday, August 4, 2011
The Degree of Apraxia
Children with Apraxia has varying degrees of other issues. I have spoken to some parents who also experience physical praxis issues, severe ADD and other planning, sensory and attention issues. I am thankful that Abby is not at the severe end of these delicate co-disorders.
If someone was to ask us a year ago if we thought Abby had attention issues I think it fair to say that we would question whether we knew that answer or not. What is normal 3 year olds behavior and what is not? A question we are constantly asking ourselves, Abby's therapists and doctors. There would be times where Abby would not pay attention to anything; although there were other times where she was attentively involved in one activity. So how did we break the code and what was our observations? We decided that Abby was a typical 3 year old. If something did not interest her, if she didn't want to do one specific thing then she would venture elsewhere. However, if you found something she enjoyed, something that interested her then she would be completely attentive. No ADD for this little girl!
Follow through however is something Abby lacks. Directions need to be given in one action prompts. "Abby pick up the doll" once the doll is picked up we can say "Abby put the doll in the toy box." The difficulty here is that something can not be vague. She doesn't understand underlying meaning such as "go clean your room" or "pick up the toys". Originally the concern was if Abby's receptive language was delaying - but when asking meaning of words and phrases she excelled. Her only area of lacking was in directions. First do this and then do this would translate into do something else. She did not get frustrated with this issue - however, we parents got extremely frustrated. Now at 4 we can give her 2 alike commands "go pick up that doll and that toy" or "go pick up all the dolls" when she goes to get the items we can then say "put the toys in the toy box." However, we can not give both commands at once. When Abby was diagnosed Apraxia we realized that this may be a planning issue. She understands what we are saying she just can not make a plan of action to complete the command.
Ah, Sensory. A few of my gifted mother friends deal with severe sensory issues. The most sever being on the Autism spectrum. So I never thought that my little girl could have such sensory issues. Or at least she never openly expressed them. I should scratch that last sentence. We didn't know she was expressing sensory issues we just thought she was being a kid.
"The white diet" - yes this is actually what pediatricians call it. It consists of pasta, potato, apples, milk, etc etc etc. This is what we were told was normal for some children. Shortly after the bottle was taken away - Abby refused milk. Abby never tolerated protein other then chicken or egg - even when she was taking those first bites of food. At about 1 1/2 we experienced the no temp issues. If it was cold or it was luke warm it was a no go! Everything needed to be room temperature; juice, noodles, fruit. At about 2 1/2 Abby developed the ability to withstand cold foods - now we introduced yogurt, popsicles, cold fruit. However, to this day, now 4, she will not do hot foods. So we still cool down all her dinner - I should say her noodles and chicken.
Textures.... An evil thing in this house. Abby can not stand different textures in her mouth. Let me use toothpaste as a prime example. Abby tolerates training toothpaste, smooth and water like. She is 4 now she is suppose to have made the move to adult toothpaste. She screams... cries... chokes... gags. It is a drama fest when we try to used adult toothpaste. We have tried every type - different colors, different textures, different tastes. Mouthwash - out of the question. She complains that it hurts (a common complaint on foods or items that have different textures - "hurts".)
Noises.... Abby loves to dance. She was successful in her little tutu performing her dance on stage. We have to thank her dance instructor for her success. During dance class the instructor noticed that Abby rarely put her hands down. They were always somewhere on her face, most of the time on her ears. As the recital drew near and the music got louder and louder the more Abby withdrew from the moves and held her head. Abby's dance instructor has a son with Autism and put a plan into action. Every class as the music started getting louder she started to put more cotton in Abby's ears, and then she started taking the cotton away. Abby stood on stage 6 mths later performing every move with no cotton in her ears. It's a great experience right? Well it seemed that over time Abby became used to the music and sound of the tap shoes - therefore not needing the cotton. But... there is always a but when sensory issues rear their head. The but here is that - she was used to one sound - tap shoes and one song. Shortly after this we notice her holding her ears a lot. The sound of loud laughter, the loudness of a movie theater, the noise of children at play. She likes these activities but she can not enjoy them because her hands are always at her ears. I feel bad for her. I want to cry. That is no way to live with your hands always at your ears. Abby will start working with an OT as soon as the school year begins. I am hoping we can make Abby's life a little more joyful.
Along with the specific speech delay's Abby shows other areas of concern such as texture sensory, audio sensory and temperature sensory - but these are all things we can concur - all things we can work with. Abby can learn - we have seen it with the leaps and bounds she has made within her speech and I believe with all my heart that we will see it when she starts working with an OT. For now I shall carry some cotton in a small little plastic bag in a small pocket in my purse for anytime my daughter needs a break. For now I will give direction one step at a time - one item at a time. For now I will feed her chicken and noodles and make sure she takes her vitamins. The Lord gave the me gift of a daughter and the Lord gave me the patience to withstand the little bumps. The Lord gave my daughter the will to succeed and the Lord will see that she does.
If someone was to ask us a year ago if we thought Abby had attention issues I think it fair to say that we would question whether we knew that answer or not. What is normal 3 year olds behavior and what is not? A question we are constantly asking ourselves, Abby's therapists and doctors. There would be times where Abby would not pay attention to anything; although there were other times where she was attentively involved in one activity. So how did we break the code and what was our observations? We decided that Abby was a typical 3 year old. If something did not interest her, if she didn't want to do one specific thing then she would venture elsewhere. However, if you found something she enjoyed, something that interested her then she would be completely attentive. No ADD for this little girl!
Follow through however is something Abby lacks. Directions need to be given in one action prompts. "Abby pick up the doll" once the doll is picked up we can say "Abby put the doll in the toy box." The difficulty here is that something can not be vague. She doesn't understand underlying meaning such as "go clean your room" or "pick up the toys". Originally the concern was if Abby's receptive language was delaying - but when asking meaning of words and phrases she excelled. Her only area of lacking was in directions. First do this and then do this would translate into do something else. She did not get frustrated with this issue - however, we parents got extremely frustrated. Now at 4 we can give her 2 alike commands "go pick up that doll and that toy" or "go pick up all the dolls" when she goes to get the items we can then say "put the toys in the toy box." However, we can not give both commands at once. When Abby was diagnosed Apraxia we realized that this may be a planning issue. She understands what we are saying she just can not make a plan of action to complete the command.
Ah, Sensory. A few of my gifted mother friends deal with severe sensory issues. The most sever being on the Autism spectrum. So I never thought that my little girl could have such sensory issues. Or at least she never openly expressed them. I should scratch that last sentence. We didn't know she was expressing sensory issues we just thought she was being a kid.
"The white diet" - yes this is actually what pediatricians call it. It consists of pasta, potato, apples, milk, etc etc etc. This is what we were told was normal for some children. Shortly after the bottle was taken away - Abby refused milk. Abby never tolerated protein other then chicken or egg - even when she was taking those first bites of food. At about 1 1/2 we experienced the no temp issues. If it was cold or it was luke warm it was a no go! Everything needed to be room temperature; juice, noodles, fruit. At about 2 1/2 Abby developed the ability to withstand cold foods - now we introduced yogurt, popsicles, cold fruit. However, to this day, now 4, she will not do hot foods. So we still cool down all her dinner - I should say her noodles and chicken.
Textures.... An evil thing in this house. Abby can not stand different textures in her mouth. Let me use toothpaste as a prime example. Abby tolerates training toothpaste, smooth and water like. She is 4 now she is suppose to have made the move to adult toothpaste. She screams... cries... chokes... gags. It is a drama fest when we try to used adult toothpaste. We have tried every type - different colors, different textures, different tastes. Mouthwash - out of the question. She complains that it hurts (a common complaint on foods or items that have different textures - "hurts".)
Noises.... Abby loves to dance. She was successful in her little tutu performing her dance on stage. We have to thank her dance instructor for her success. During dance class the instructor noticed that Abby rarely put her hands down. They were always somewhere on her face, most of the time on her ears. As the recital drew near and the music got louder and louder the more Abby withdrew from the moves and held her head. Abby's dance instructor has a son with Autism and put a plan into action. Every class as the music started getting louder she started to put more cotton in Abby's ears, and then she started taking the cotton away. Abby stood on stage 6 mths later performing every move with no cotton in her ears. It's a great experience right? Well it seemed that over time Abby became used to the music and sound of the tap shoes - therefore not needing the cotton. But... there is always a but when sensory issues rear their head. The but here is that - she was used to one sound - tap shoes and one song. Shortly after this we notice her holding her ears a lot. The sound of loud laughter, the loudness of a movie theater, the noise of children at play. She likes these activities but she can not enjoy them because her hands are always at her ears. I feel bad for her. I want to cry. That is no way to live with your hands always at your ears. Abby will start working with an OT as soon as the school year begins. I am hoping we can make Abby's life a little more joyful.
Along with the specific speech delay's Abby shows other areas of concern such as texture sensory, audio sensory and temperature sensory - but these are all things we can concur - all things we can work with. Abby can learn - we have seen it with the leaps and bounds she has made within her speech and I believe with all my heart that we will see it when she starts working with an OT. For now I shall carry some cotton in a small little plastic bag in a small pocket in my purse for anytime my daughter needs a break. For now I will give direction one step at a time - one item at a time. For now I will feed her chicken and noodles and make sure she takes her vitamins. The Lord gave the me gift of a daughter and the Lord gave me the patience to withstand the little bumps. The Lord gave my daughter the will to succeed and the Lord will see that she does.
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