When life gives you lemons….be grateful you have something to eat.
Not exactly what you were expecting right? After a year of working with Chris Curry and the Families Together staff I finally feel like I have some idea of what to make with those lemons so that they are not so bitter to swallow.
Many people try to help you by saying things like, “Only special people are given kids with special needs,” “You are such a good mom, at least you know how to work the system” and finally “Things just take time but everything will be ok you will see.”
Unfortunately, life sometimes gives you lemons and then you need a new cookbook because you only learned to cook using apples. That is what it is like to live everyday with a child who has significant developmental delays.
I know in the past 6 months I have told everyone that will listen that the parenting skills in my tool box don’t work with this child. I have asked everyone who will listen to just tell me where the parenting book for developmentally delayed children was and I would gladly pay whatever the price of the book and will implement the techniques today. Only there is no such book called, “What to Expect When you have a Developmentally Delayed/Autistic/CF/Physically Challenged/Mentally Challenged Child”
That is were Families Together comes in….they have a cookbook and they are willing to share the recipes with families like mine. My family met the staff of Families Together in September 2006 at an Enrichment Weekend that offered assistance and hope for families who include “Children who Challenge”. This sounded like our family and when we were offered an all expense paid weekend where each child would have a one on one caregiver, we were ready for a break and hopeful for some answers.
When we arrived to the weekend, I was not a happy camper- I had been eating lemons for the last 2 years. I was not used to being on the receiving end of services. I need some answers but I was sure that my son’s developmental delays could be overcome by intensive therapy and changing some things about our parenting style and life would be wonderful just like all the other normal families in the world. I sat in the back of the room angry and unwilling to admit that my family was struggling in the same ways that the other families who were attending the weekend were.
Not exactly what you were expecting right? After a year of working with Chris Curry and the Families Together staff I finally feel like I have some idea of what to make with those lemons so that they are not so bitter to swallow.
Many people try to help you by saying things like, “Only special people are given kids with special needs,” “You are such a good mom, at least you know how to work the system” and finally “Things just take time but everything will be ok you will see.”
Unfortunately, life sometimes gives you lemons and then you need a new cookbook because you only learned to cook using apples. That is what it is like to live everyday with a child who has significant developmental delays.
I know in the past 6 months I have told everyone that will listen that the parenting skills in my tool box don’t work with this child. I have asked everyone who will listen to just tell me where the parenting book for developmentally delayed children was and I would gladly pay whatever the price of the book and will implement the techniques today. Only there is no such book called, “What to Expect When you have a Developmentally Delayed/Autistic/CF/Physically Challenged/Mentally Challenged Child”
That is were Families Together comes in….they have a cookbook and they are willing to share the recipes with families like mine. My family met the staff of Families Together in September 2006 at an Enrichment Weekend that offered assistance and hope for families who include “Children who Challenge”. This sounded like our family and when we were offered an all expense paid weekend where each child would have a one on one caregiver, we were ready for a break and hopeful for some answers.
When we arrived to the weekend, I was not a happy camper- I had been eating lemons for the last 2 years. I was not used to being on the receiving end of services. I need some answers but I was sure that my son’s developmental delays could be overcome by intensive therapy and changing some things about our parenting style and life would be wonderful just like all the other normal families in the world. I sat in the back of the room angry and unwilling to admit that my family was struggling in the same ways that the other families who were attending the weekend were. At the end of the weekend we were offered a program that including some home visits to assist in implementing a positive behavior approach to parenting special needs children. Again, I was not a happy camper. Chris came to visit us in November right after I left my job to stay home with my 3 year old son, Harrison, who was on the verge of being kicked out of daycare because of his behavior.
I cried most of the first visit and just need to have some answers on what to do and how to make sure that we were going to be able to make it with medical co-payments ranging from $150 to $250 per month, in addition to all our other living expenses as well as a parent a child who did not seem to be making much progress in therapy or at the preschool. We had a appointment with Department of Developmental Disability Services where it was determined that we had a high level of need but because we did not have a Medical Coupon issued by the state that we would need to be on a waiting list that could take up to 3 years to come to the top. My family was offered some referrals for services but Energy Assistance and Mortgage Assistance are limited to low-income families and we were just over the income guideline.
The most distressing event was that I had called to make an appointment with a specialist to have a formal evaluation and diagnosis as to what we were dealing with only to learn that we would have to wait 6 months for an appointment. I researched the specialists in the area only to find that there is only 3 in all of Spokane County and one was not taking any new patients. I was so discouraged and felt that I was given the sourest lemons ever made.
In the months that followed, we started to look forward to our monthly visits with Chris. I started to learn new ways to engage my son and communicate with him. It was really hard at first to admit that we did not know how to implement a picture schedule (we were offered one for toilet training from the school district but no instructions). My son started to learn simple sign language at preschool and this was really the first time that Harrison was able to communicate his needs-Chris taught him “waiting” and that one word has helped make our life more manageable daily.
Many of the providers assumed that we knew the language associated with services that are normally offered to families with children who have disabilities. As a social worker I was familiar with the “Alphabet Soup” of many fields but PEC, SLP, IEP, and DD were all new to my soup bowl. Chris defined the “alphabet soup” for us on each visit and offered us hope. Most of all Harrison bonded with her and started to interact with her more on each visit.
The day Harrison received a diagnosis of “Autism” I called Chris and cried. She was the most supportive to my family that day. I was so sure at that time that we were forever to eat those horrible sour lemons now that we had this horrible diagnosis. She offered us the most encouraging words and reminded us that “Harrison is still the same little boy that he was only hours before, yesterday, and a week ago.” Only now we had a name for what was wrong and proven research on how to deal with this disability to help Harrison become that person he needs to be. The help that she offered kept us going. The skills she was teaching us were working and we were starting to see some progress in Harrison.
We continued to juggle the costs associated with a special needs child and daily life but the money kept getting tighter and tighter-our savings was now gone. Finally wondering were I was going to get money for milk one week in June I called and asked what the income guidelines were for the WIC program (my husband was working all the over-time he could to keep a roof over our heads and to pay for the therapies that were needed). I learned that we were just under the income guideline by $20. I made an appointment and was offered some assistance there, but the best thing that we learned is that the Children’s Medical Income Guidelines were a bit higher. We qualified for a medical coupon (by less than $40) to cover all the co-payments for therapy and this gave us the “Golden Ticket” to Department of Developmental Disability Services.
Again I called Chris, only this time it was to share the good news that we finally were going to qualify for the services that we needed through Department of Disability Services. Once we were assigned a caseworker with DD Services we learned other new things like incontinence supplies were provided, respite care and personal care was offered and hope.
This past month I can honestly say that we have started living again. For the last couple of years we have just been surviving and trying to getting through the day…now we are starting to enjoy the wonderful flavor of lemon pie, lemonade, and mixing that lemon with sugar, and also adding other fruits and foods too.
Life is still crazy but now we are able to do more than exist…. we are able to LIVE.
I cried most of the first visit and just need to have some answers on what to do and how to make sure that we were going to be able to make it with medical co-payments ranging from $150 to $250 per month, in addition to all our other living expenses as well as a parent a child who did not seem to be making much progress in therapy or at the preschool. We had a appointment with Department of Developmental Disability Services where it was determined that we had a high level of need but because we did not have a Medical Coupon issued by the state that we would need to be on a waiting list that could take up to 3 years to come to the top. My family was offered some referrals for services but Energy Assistance and Mortgage Assistance are limited to low-income families and we were just over the income guideline.
The most distressing event was that I had called to make an appointment with a specialist to have a formal evaluation and diagnosis as to what we were dealing with only to learn that we would have to wait 6 months for an appointment. I researched the specialists in the area only to find that there is only 3 in all of Spokane County and one was not taking any new patients. I was so discouraged and felt that I was given the sourest lemons ever made.
In the months that followed, we started to look forward to our monthly visits with Chris. I started to learn new ways to engage my son and communicate with him. It was really hard at first to admit that we did not know how to implement a picture schedule (we were offered one for toilet training from the school district but no instructions). My son started to learn simple sign language at preschool and this was really the first time that Harrison was able to communicate his needs-Chris taught him “waiting” and that one word has helped make our life more manageable daily.
Many of the providers assumed that we knew the language associated with services that are normally offered to families with children who have disabilities. As a social worker I was familiar with the “Alphabet Soup” of many fields but PEC, SLP, IEP, and DD were all new to my soup bowl. Chris defined the “alphabet soup” for us on each visit and offered us hope. Most of all Harrison bonded with her and started to interact with her more on each visit.
The day Harrison received a diagnosis of “Autism” I called Chris and cried. She was the most supportive to my family that day. I was so sure at that time that we were forever to eat those horrible sour lemons now that we had this horrible diagnosis. She offered us the most encouraging words and reminded us that “Harrison is still the same little boy that he was only hours before, yesterday, and a week ago.” Only now we had a name for what was wrong and proven research on how to deal with this disability to help Harrison become that person he needs to be. The help that she offered kept us going. The skills she was teaching us were working and we were starting to see some progress in Harrison.
We continued to juggle the costs associated with a special needs child and daily life but the money kept getting tighter and tighter-our savings was now gone. Finally wondering were I was going to get money for milk one week in June I called and asked what the income guidelines were for the WIC program (my husband was working all the over-time he could to keep a roof over our heads and to pay for the therapies that were needed). I learned that we were just under the income guideline by $20. I made an appointment and was offered some assistance there, but the best thing that we learned is that the Children’s Medical Income Guidelines were a bit higher. We qualified for a medical coupon (by less than $40) to cover all the co-payments for therapy and this gave us the “Golden Ticket” to Department of Developmental Disability Services.
Again I called Chris, only this time it was to share the good news that we finally were going to qualify for the services that we needed through Department of Disability Services. Once we were assigned a caseworker with DD Services we learned other new things like incontinence supplies were provided, respite care and personal care was offered and hope.This past month I can honestly say that we have started living again. For the last couple of years we have just been surviving and trying to getting through the day…now we are starting to enjoy the wonderful flavor of lemon pie, lemonade, and mixing that lemon with sugar, and also adding other fruits and foods too.
Life is still crazy but now we are able to do more than exist…. we are able to LIVE.
1 comment:
I enjoyed reading your story, you sure a cutie on your hands!!
Post a Comment