Martha,
It's great that Abigail is crying and eating normally. I'm glad that the stress hasn't aggravated your MC symptoms and you've even gained some weight. That's quite an accomplishment.
I think we grandmothers agonize over our grandchildren in a different way than we did over our children. It's probably because we've raised children and we learned a lot of life's lessons along the way. We can see their future and we worry about it. I know that I do, and hard as I try, I can't stop worrying about them. If we didn't love them so much, we would be less anxious.
Love,
Gloria
new granddaughter
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Martha!
Congratulations to you and your family on the arrival of Abigail (love the name)!
I have worked with families of kids with special needs for many years and have experienced the initial shock of diagnosis with them. I'm sure you've already seen this, but in case you haven't, here it is:
Welcome to Belgium
Having a special needs child is like planning a trip to Italy. Prior to the trip, you read everything you can about Italy. You look over all of the travel flyers, search the Internet for the most interesting sites, study every map, rail schedule and hotel brochure. Finally, you board the plane, buckle up and close your eyes – dreaming of this wonderful interlude in Italy.
After the long flight, the attendant smiles and says we are about to land at our destination.
“Welcome to Belgium!”
Now, there is nothing wrong with Belgium. You just didn’t plan to be in Belgium. You have no map, no travel guide, no information about the best place to stay or the most interesting sites to see, but, here you are. The trip to Italy is gone. You are in Belgium.
After the initial shock wears off, the choice is yours. You can remain angry and resentful that Belgium is not at all like Italy and that you have been cheated out of your dream. The other option is to enjoy Belgium for being Belgium. Learn all about it and learn to love its unique qualities. You can also save your dream for another time or dream new dreams. The choices are yours.
Many of the families with whom I have worked have talked about how much they have learned from and appreciated having a special child. They mention learning to live life moment to moment, day-to-day, with minor accomplishments assuming much more importance and being a source of genuine joy. They mention that their child with Downs helps to "ground" them is this crazy, moving-too-fast world we live in...........helps them to re-evaluate their priorities. In my experience, children with Downs Syndrome are happy much of the time, joyful even. (This is not often true of the myriad of other syndromes that are not known as well as Downs is - there are syndromes where crying or self-mutilation is constant, for example). A huge plus is the availability of public education services beginning at birth for children with special needs. It has made such a difference, since we know that the first 5 years of life are so critical for brain development and learning.
I wish you and your family all of the best and will look forward to hearing more about Abigail.
Love,
Polly
Congratulations to you and your family on the arrival of Abigail (love the name)!
I have worked with families of kids with special needs for many years and have experienced the initial shock of diagnosis with them. I'm sure you've already seen this, but in case you haven't, here it is:
Welcome to Belgium
Having a special needs child is like planning a trip to Italy. Prior to the trip, you read everything you can about Italy. You look over all of the travel flyers, search the Internet for the most interesting sites, study every map, rail schedule and hotel brochure. Finally, you board the plane, buckle up and close your eyes – dreaming of this wonderful interlude in Italy.
After the long flight, the attendant smiles and says we are about to land at our destination.
“Welcome to Belgium!”
Now, there is nothing wrong with Belgium. You just didn’t plan to be in Belgium. You have no map, no travel guide, no information about the best place to stay or the most interesting sites to see, but, here you are. The trip to Italy is gone. You are in Belgium.
After the initial shock wears off, the choice is yours. You can remain angry and resentful that Belgium is not at all like Italy and that you have been cheated out of your dream. The other option is to enjoy Belgium for being Belgium. Learn all about it and learn to love its unique qualities. You can also save your dream for another time or dream new dreams. The choices are yours.
Many of the families with whom I have worked have talked about how much they have learned from and appreciated having a special child. They mention learning to live life moment to moment, day-to-day, with minor accomplishments assuming much more importance and being a source of genuine joy. They mention that their child with Downs helps to "ground" them is this crazy, moving-too-fast world we live in...........helps them to re-evaluate their priorities. In my experience, children with Downs Syndrome are happy much of the time, joyful even. (This is not often true of the myriad of other syndromes that are not known as well as Downs is - there are syndromes where crying or self-mutilation is constant, for example). A huge plus is the availability of public education services beginning at birth for children with special needs. It has made such a difference, since we know that the first 5 years of life are so critical for brain development and learning.
I wish you and your family all of the best and will look forward to hearing more about Abigail.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly, I have indeed heard the Italy-Belgium analogy, only in my book it was Holland instead of Italy.
I am so glad that there is all sorts of early intervention available. I talked to a lady whose 1-yr-old grandson has Down syndrome, and she said one of the exercises they learned was to stick their finger in the baby's mouth, which makes him bite down, and pull his tongue in. That helps them strengthen the mouth and lip muscles, so their tongues don't stick out all the time. We would never have known to do anything like that!!
Gloria, as a grandparent, I feel the pain not only for the baby, but for my son, too. I'm grieving for two generations.
I look forward to that day when Abigail is such a part of our lives that we can't imagine her any different, and we can see the joy that she brings. We're gonna love being in Belgium!!
Love,
Martha
I am so glad that there is all sorts of early intervention available. I talked to a lady whose 1-yr-old grandson has Down syndrome, and she said one of the exercises they learned was to stick their finger in the baby's mouth, which makes him bite down, and pull his tongue in. That helps them strengthen the mouth and lip muscles, so their tongues don't stick out all the time. We would never have known to do anything like that!!
Gloria, as a grandparent, I feel the pain not only for the baby, but for my son, too. I'm grieving for two generations.
I look forward to that day when Abigail is such a part of our lives that we can't imagine her any different, and we can see the joy that she brings. We're gonna love being in Belgium!!
Love,
Martha
Martha
Martha, congratulations on Abigail's arrival. I share your anniversary, and her birthdate.
I'm sure that the Down's diagnosis threw the family for a loop, and that it will take a while to figure everything out. But, as a retired middle school teacher, I can tell you that the Down's students who passed through my school were well-loved and accepted by the majority of kids (who, thank goodness, have had much more exposure than we had back in the day), and they participated in many school activities with great success. I am heartened by the number of adaptive programs out there, and also the extra-curriculars that are available in which "able" kids are paired with "special" kids.
My school did a fantastic job of mainstreaming our special kids to the degree that was possible and beneficial to them, and in supporting families who wanted all that was possible for their children.
I think the biggest thing that parents of special children need to do is understand that they will always have to advocate for their child, and that their local school system is not their enemy.
There's no doubt that having a special child is a challenge for the whole family. but from what I've seen in recent years, families rise to the job.
I'm sure that the Down's diagnosis threw the family for a loop, and that it will take a while to figure everything out. But, as a retired middle school teacher, I can tell you that the Down's students who passed through my school were well-loved and accepted by the majority of kids (who, thank goodness, have had much more exposure than we had back in the day), and they participated in many school activities with great success. I am heartened by the number of adaptive programs out there, and also the extra-curriculars that are available in which "able" kids are paired with "special" kids.
My school did a fantastic job of mainstreaming our special kids to the degree that was possible and beneficial to them, and in supporting families who wanted all that was possible for their children.
I think the biggest thing that parents of special children need to do is understand that they will always have to advocate for their child, and that their local school system is not their enemy.
There's no doubt that having a special child is a challenge for the whole family. but from what I've seen in recent years, families rise to the job.
Suze
Martha, also, as I re-read my post, I thought of an excerpt from the eulogy I gave for my mother, who died of Alzheimer's this summer. I commented that in her infirmity, she had taught us all so much about how to be tender, patient, and kind. I'm sure that Abigail will teach you some of those same things, and much more.
Suze
I mean Holland instead of Belgium, not Holland instead of Italy. You'd never guess I do proof-reading for academic articles!!
Suze, August 23 is a special day.
It's great that schools have so much care for special needs kids now. My DIL homeschools the older children, but I hope that they will take advantage of what the schools offer for Abigail when the time comes.
Love,
Martha
Suze, August 23 is a special day.
It's great that schools have so much care for special needs kids now. My DIL homeschools the older children, but I hope that they will take advantage of what the schools offer for Abigail when the time comes.
Love,
Martha
Martha
The early intervention services mandated for kids with special needs are available without charge to every child through the local public school system, beginning at birth and continuing until kindergarden. In my experience, most of the services for children birth to 3 years are provided in the child's home, by qualified multidisciplinary professionals - OTs, PTs, speech/language therapists, etc., who visit. A program with specific goals and objectives is tailored to the child's individual needs, and the parents are involved every step of the way, since they are the ones who must incorporate the therapies into daily life. Monitoring of progress is an important part of the services, too.
Martha, it sounds as if the Infants and Toddlers Program (the public services for 0-3 year olds) would fit well with your daughter's preference for home schooling, since most services are home-based and the parent is considered the primary "teacher". At any rate, whether the family opts for the public program or pays privately for E.I.services, it is important to start them as soon after birth as possible. Especially with Down Syndrome, where the PT and OT can recommend exercises for improving muscle strength and tone (like that example you heard about for minimizing tongue thrust).
I have also heard the "Holland" version.
Love,
Polly
P.S. How is Abigail doing?
Martha, it sounds as if the Infants and Toddlers Program (the public services for 0-3 year olds) would fit well with your daughter's preference for home schooling, since most services are home-based and the parent is considered the primary "teacher". At any rate, whether the family opts for the public program or pays privately for E.I.services, it is important to start them as soon after birth as possible. Especially with Down Syndrome, where the PT and OT can recommend exercises for improving muscle strength and tone (like that example you heard about for minimizing tongue thrust).
I have also heard the "Holland" version.
Love,
Polly
P.S. How is Abigail doing?
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Abigail is staying awake a lot more than she did before, which is good. She has learned that you're supposed to sleep when it's dark, so DIL has a hard time waking her up for her 3 AM feeding. She nursed the other 3 kids, but Abigail still doesn't latch on, so DIL is pumping breast milk and feeding her with a bottle. Abigail is often "behind" in her feedings--if she misses the 3 o'clock feeding, she's catching up with all the other feedings. It's pretty different from the others, who just ate whenever they felt like it, however much they wanted.
Abigail is gaining weight, though. She makes these little grimaces, which we proudly label smiles. The other kids are very good with her. The 13-year-old is particularly helpful with both Abigail and Jonathan, who is almost two.
Someone from EI is coming to the house to evaluate Abigail and set up a program for her sometime in mid-October. The staff is probably thinly stretched, so this was the earliest they could do it. She has met with two lactation consultants, who have given her hope that Abigail may eventually transition to nursing direct.
Thanks, everyone, for your love, concern, and advice. Knowing you all care is really helping me through this.
Love,
Martha
Abigail is gaining weight, though. She makes these little grimaces, which we proudly label smiles. The other kids are very good with her. The 13-year-old is particularly helpful with both Abigail and Jonathan, who is almost two.
Someone from EI is coming to the house to evaluate Abigail and set up a program for her sometime in mid-October. The staff is probably thinly stretched, so this was the earliest they could do it. She has met with two lactation consultants, who have given her hope that Abigail may eventually transition to nursing direct.
Thanks, everyone, for your love, concern, and advice. Knowing you all care is really helping me through this.
Love,
Martha
Martha
A quick update on Abigail.
Yesterday was a red-letter day. Abigail nursed for all of her feedings! So far she has been taking breast milk from a bottle, only a little at a time, at frequent intervals, to keep her from spitting it up. DIL decided to try nursing her every hour, and this time Abigail took the breast each time and nursed long enough to get full. A major breakthrough after two and a half months of pumping.
We just hope and pray that Abigail will continue to nurse, and they will be able to move away from the bottles. Between pumping and then bottle-feeding, DIL has had little time to do anything else at all!
Love.
Martha
Yesterday was a red-letter day. Abigail nursed for all of her feedings! So far she has been taking breast milk from a bottle, only a little at a time, at frequent intervals, to keep her from spitting it up. DIL decided to try nursing her every hour, and this time Abigail took the breast each time and nursed long enough to get full. A major breakthrough after two and a half months of pumping.
We just hope and pray that Abigail will continue to nurse, and they will be able to move away from the bottles. Between pumping and then bottle-feeding, DIL has had little time to do anything else at all!
Love.
Martha
Martha
Martha,
I have just read the entire thread, and am SO glad Abigail is nursing well now.
As an OT (one of those mentioned by Polly) I have worked with many Down's Syndrome children and adults, and can tell you that Down's people are naturally most loving and delightful. They are always affectionate, and mostly good tempered (who is good tempered all the time?) and easy to get along with. Abigail is lucky to be born into a family with so many adults around and siblings who already love her and want to help.
Once she is in a program she will be able to progress and make strides.
I wish you all the happiness in the world with your special baby.
I have just read the entire thread, and am SO glad Abigail is nursing well now.
As an OT (one of those mentioned by Polly) I have worked with many Down's Syndrome children and adults, and can tell you that Down's people are naturally most loving and delightful. They are always affectionate, and mostly good tempered (who is good tempered all the time?) and easy to get along with. Abigail is lucky to be born into a family with so many adults around and siblings who already love her and want to help.
Once she is in a program she will be able to progress and make strides.
I wish you all the happiness in the world with your special baby.