New Mexico
Our daughter, Ashley, is 13 years old and in 7th grade. I am technically her step-mom, so I don't know all the very earliest details. But, I have been raising her since she was five years old. Ashley lives full-time with her Dad (my husband), her step-sister, two half-sisters, and me. Her step-sister, from my first marriage, is just 5 months older than Ashley. Through the years, it has made for some rather difficult moments (one ready to do things, the other not) and some heart-warming moments (Jennifer educating insensitive kids on the school playground and standing up for Ashley). Having the two girls so close in age, gave us some much-needed perspective at times as well.
When I first met Ashley, she was five and I knew something was different. Her communication skills were limited, her speech nearly indistinguishable. She also did not have the same social or motor skills as children her age. She did not understand "appropriate" public behavior and was overly familiar with people who were strangers.
It took her father more than a month and many questions from me before he told me Ashley has MDS. It did not come as a surprise to me, based on my interactions with her. But I was surprised at his level of denial and that of his family. It is understandable to want to believe the "mild" diagnosis, but it can also be a terrible disservice to the child if that means early intervention is not sought. Based on the well-meaning words of doctors, my husband clung to the notion that MDS meant Ashley would probably "just be a little slower than other children." He did not want to investigate further, or feel a need for special services since the prognosis seemed so benign. If the doctors had been better informed, they could have provided better information to Kevin. I believe Ashley could have benefited from early stimulation and intervention programs if they had been availed.
At any rate, based on the belief that Ashley would just be "a little slower" than other children, she was enrolled in regular kindergarten. Within a month the school asked permission to test her for Special Ed., saying that she was not able to keep up, and was developing behavior problems (probably out of frustration), and was disruptive in the classroom. Her testing showed great delays in all cognitive areas. Her motor skills were also delayed, but not to the same extent. It was decided she would benefit from the Special Ed. classroom. And, she did do a little better there. But it took more than a year for Ashley to accept and follow the rules required at school (even in Special Ed.).
As the years have gone by, I have educated myself on Downs and MDS. I have had to fight with teachers and schools to advocate for Ashley's educational needs. My experience has been many "educators" prefer to pass a child on through the system than to actually educate her. This has infuriated me at times, but through persistence we have been able to get better-suited programs for Ashley. If I can offer one piece of advice here, it is find an ally within the school district who will listen and help you fight the battles. I was fortunate to find such a person and it made a huge difference for Ashley.
Like all special needs parents, we have asked teachers what they saw for Ashley's future. The answer was usually the same, "no one really has a crystal ball." We have always asked for Ashley's instruction to be practical, hands-on. Our goal is for Ashley to achieve the maximum level of independence she can. And, it's been our experience, despite the IEP (Individual Education Plan) process mandated by federal law, many Special Ed. teachers still don't want (or have too many students) to follow through with the custom-tailored programs designed for each Special Ed. student. But if you insist on what you think best serves your child, it is possible to get services. Remember, the squeaky wheel theory!
Ashley is very socially out-going and enjoys school. She has done quite well learning to read, she can decipher at the 3rd/4th grade level (although her comprehension is more like K/1st grade). She can do simple arithmetic (adding and subtracting double digits, even with some re-grouping). Her areas of greatest challenge have been understanding time and money. She really struggles with that a lot. It just doesn't make sense to her.
The situation with siblings has been interesting. Ashley's step-sister, Jennifer is five months older. When they were younger they played together. But by the time they were nine, they had little in common (interest-wise) and their playing usually consisted of Jennifer as teacher and Ashley as student. Then, their half-sister, Amanda was born. Ashley learned to help with simple things and as Amanda grew they became good friends and playmates. Two years later we had our youngest daughter, Brandyn. The girls are now ages 13,13,4,2. Ashley plays with her younger sisters, and enjoys reading them stories.
We sometimes see Ashley's frustration, when Amanda (4) can answer Ashley's homework questions. We try to politely remind Amanda that it is Ashley's homework, and to let Ashley do it. But, as Amanda and Brandyn get older they will surpass Ashley in many areas. Dealing with that, teaching the younger ones to be gracious and caring, and helping Ashley to not feel bad are challenges we know we must face. But, it does make us a little sad at the same time.
Kevin has come to terms with Ashley's situation, and we are both realists. Over the last 2-3 years we have noticed her progress has slowed tremendously. Her teachers and we feel that she has probably reached her final plateau (as often happens around age 12) as far as depth of understanding of the world. So now, we are far more focused on getting Ashley the life skills she will need to be independent. She actually seems to prefer it too. I suspect it is less frustrating and she can see the results of her learning (i.e.: baking cookies). Ashley is very task oriented, a solely linear thinker and prefers high repetition. The repetition offers her a comfort level - knowing she knows how to do something and being able to consistently succeed at doing it.
Although many MDS children present with milder symptoms than regular Downs, each child is different. Do not let hopefulness get in the way of providing every opportunity to your child. Ashley is a prime example of an MDS child who physically shows little evidence of Downs, yet has significant cognitive deficiencies. Doctors cannot tell from blood tests to what extent a child will be effected. The tendency to want to translate a "milder" appearance into a "milder" effect can be very misleading. It also means others (even professionals) won't understand your child's needs like you do. In Ashley's case she has learned a lot of coping tricks, which make people think she understands them when really she doesn't. She has fooled many professionals, because she can read subtle clues that give away which answer is correct. It doesn't mean she understood, and that can sometimes be dangerous. Always be willing to explain where the deficiencies lie, so others can be sure to effectively communicate with your child.
It is every parent's job to prepare their child for adulthood. In the case of MDS children, that is no different. The path getting there may have some different curves, and the adult lifestyle may be different -- but getting there can still be the same miraculous adventure it is with all children. To succeed you must be open and honest with yourself, your child and others. Above all, trust your heart and enjoy yourselves!
It took her father more than a month and many questions from me before he told me Ashley has MDS. It did not come as a surprise to me, based on my interactions with her. But I was surprised at his level of denial and that of his family. It is understandable to want to believe the "mild" diagnosis, but it can also be a terrible disservice to the child if that means early intervention is not sought. Based on the well-meaning words of doctors, my husband clung to the notion that MDS meant Ashley would probably "just be a little slower than other children." He did not want to investigate further, or feel a need for special services since the prognosis seemed so benign. If the doctors had been better informed, they could have provided better information to Kevin. I believe Ashley could have benefited from early stimulation and intervention programs if they had been availed.
At any rate, based on the belief that Ashley would just be "a little slower" than other children, she was enrolled in regular kindergarten. Within a month the school asked permission to test her for Special Ed., saying that she was not able to keep up, and was developing behavior problems (probably out of frustration), and was disruptive in the classroom. Her testing showed great delays in all cognitive areas. Her motor skills were also delayed, but not to the same extent. It was decided she would benefit from the Special Ed. classroom. And, she did do a little better there. But it took more than a year for Ashley to accept and follow the rules required at school (even in Special Ed.).
As the years have gone by, I have educated myself on Downs and MDS. I have had to fight with teachers and schools to advocate for Ashley's educational needs. My experience has been many "educators" prefer to pass a child on through the system than to actually educate her. This has infuriated me at times, but through persistence we have been able to get better-suited programs for Ashley. If I can offer one piece of advice here, it is find an ally within the school district who will listen and help you fight the battles. I was fortunate to find such a person and it made a huge difference for Ashley.
Like all special needs parents, we have asked teachers what they saw for Ashley's future. The answer was usually the same, "no one really has a crystal ball." We have always asked for Ashley's instruction to be practical, hands-on. Our goal is for Ashley to achieve the maximum level of independence she can. And, it's been our experience, despite the IEP (Individual Education Plan) process mandated by federal law, many Special Ed. teachers still don't want (or have too many students) to follow through with the custom-tailored programs designed for each Special Ed. student. But if you insist on what you think best serves your child, it is possible to get services. Remember, the squeaky wheel theory!
Ashley is very socially out-going and enjoys school. She has done quite well learning to read, she can decipher at the 3rd/4th grade level (although her comprehension is more like K/1st grade). She can do simple arithmetic (adding and subtracting double digits, even with some re-grouping). Her areas of greatest challenge have been understanding time and money. She really struggles with that a lot. It just doesn't make sense to her.
The situation with siblings has been interesting. Ashley's step-sister, Jennifer is five months older. When they were younger they played together. But by the time they were nine, they had little in common (interest-wise) and their playing usually consisted of Jennifer as teacher and Ashley as student. Then, their half-sister, Amanda was born. Ashley learned to help with simple things and as Amanda grew they became good friends and playmates. Two years later we had our youngest daughter, Brandyn. The girls are now ages 13,13,4,2. Ashley plays with her younger sisters, and enjoys reading them stories.
We sometimes see Ashley's frustration, when Amanda (4) can answer Ashley's homework questions. We try to politely remind Amanda that it is Ashley's homework, and to let Ashley do it. But, as Amanda and Brandyn get older they will surpass Ashley in many areas. Dealing with that, teaching the younger ones to be gracious and caring, and helping Ashley to not feel bad are challenges we know we must face. But, it does make us a little sad at the same time.
Kevin has come to terms with Ashley's situation, and we are both realists. Over the last 2-3 years we have noticed her progress has slowed tremendously. Her teachers and we feel that she has probably reached her final plateau (as often happens around age 12) as far as depth of understanding of the world. So now, we are far more focused on getting Ashley the life skills she will need to be independent. She actually seems to prefer it too. I suspect it is less frustrating and she can see the results of her learning (i.e.: baking cookies). Ashley is very task oriented, a solely linear thinker and prefers high repetition. The repetition offers her a comfort level - knowing she knows how to do something and being able to consistently succeed at doing it.
Although many MDS children present with milder symptoms than regular Downs, each child is different. Do not let hopefulness get in the way of providing every opportunity to your child. Ashley is a prime example of an MDS child who physically shows little evidence of Downs, yet has significant cognitive deficiencies. Doctors cannot tell from blood tests to what extent a child will be effected. The tendency to want to translate a "milder" appearance into a "milder" effect can be very misleading. It also means others (even professionals) won't understand your child's needs like you do. In Ashley's case she has learned a lot of coping tricks, which make people think she understands them when really she doesn't. She has fooled many professionals, because she can read subtle clues that give away which answer is correct. It doesn't mean she understood, and that can sometimes be dangerous. Always be willing to explain where the deficiencies lie, so others can be sure to effectively communicate with your child.
It is every parent's job to prepare their child for adulthood. In the case of MDS children, that is no different. The path getting there may have some different curves, and the adult lifestyle may be different -- but getting there can still be the same miraculous adventure it is with all children. To succeed you must be open and honest with yourself, your child and others. Above all, trust your heart and enjoy yourselves!
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