Parents with children with disabilities: how did you react?

[God saves]

I am a young adult with no children, but I wonder if you have a child with a disability, what was your reaction and how did you cope with your child having a disability?

 

[Jeshu]

We have adopted a child with disability because the mother rejected her child because of her disabilities and we didn't think she deserved that.

Nowadays a huge percentage of babies with disabilities are aborted so it looks like a lot of people don't like having a child with disabilities but honestly most people don't know what a blessing such a child can be. The world is a better place because of them.

We found however that a child with disabilities has special love on offer for those who care for them. We have learned to love this child as our own and wouldn't dream getting rid of her. Our four natural children have also always been happy to have her in the family and she is greatly loved by them.

We found that to have a child with disabilities requires extra work and extra parenting skills but is highly rewarded relationship wise.

 

[God saves]

We have adopted a child with disability because the mother rejected her child because of her disabilities and we didn't think she deserved that.

Nowadays 99 percent of babies with disabilities are aborted so it looks like most people don't like having a child with disabilities but honestly most people don't know what a blessing such a child can be. The world is a better place because of them.

We found however that a child with disabilities has special love on offer for those who care for them. We have learned to love this child as our own and wouldn't dream getting rid of her. Our four natural children have also always been happy to have her in the family and she is greatly loved by them.

We found that to have a child with disabilities requires extra work and extra parenting skills but is highly rewarded relationship wise.

That sounds wonderful.

May I ask how old is your adopted child and what kind of disability she has?

I understand that most people may prefer to have a healthy baby without a disability and I don't see anything wrong with wanting a healthy baby, however I do not think it is reasonable to abort a child because of a potential disability (I personally believe that abortion is wrong anyway). Whether or not a child has a disability, he or she is still a child made in God's image.

 

[hedrick]

Nowadays 99 percent of babies with disabilities are aborted

This looks like a misunderstanding. According to Wikipedia, "Statistics today conclude that 90 percent of fetuses that are diagnosed with Down syndrome via fetal genetic testing are aborted. However, only 2-3 percent of women agree to completing genetic testing, CVS or amniocentesis, the current tests for chromosomal abnormalities. When taking this into account, it is believed that approximately 50 percent of fetuses with Down Syndrome are aborted."

 

[Jeshu]

That sounds wonderful.

May I ask how old is your adopted child and what kind of disability she has?

I understand that most people may prefer to have a healthy baby without a disability and I don't see anything wrong with wanting a healthy baby, however I do not think it is reasonable to abort a child because of a potential disability (I personally believe that abortion is wrong anyway). Whether or not a child has a disability, he or she is still a child made in God's image.

We adopted her when she was 5 years old, she is 32 now. Her first five years were very hard on her and a lot of damage has been inflicted. So we didn't only receive a child with a disability, she is down syndrome, she suffered from neglect and abuse as well. Our girl has a severe form of down syndrome, her intellectual ability ranges from 1 1/5 to a 3 year old though socially she is much more mature.

We are very proud of her she has a heart of gold.

This looks like a misunderstanding. According to Wikipedia, "Statistics today conclude that 90 percent of fetuses that are diagnosed with Down syndrome via fetal genetic testing are aborted. However, only 2-3 percent of women agree to completing genetic testing, CVS or amniocentesis, the current tests for chromosomal abnormalities. When taking this into account, it is believed that approximately 50 percent of fetuses with Down Syndrome are aborted."

Its true the abortion rate is not quite 99 percent i used that figure to stress my point not to state a scientific fact. However the figure isn't to far off from reality. i'm from Western Australia the abortion rate is 93 percent here, it is near genocide and i'm deeply saddened by it.

This news paper article appears to have more up to date statistics than wikipedia

 

[hedrick]

Its true the abortion rate is not quite 99 percent i used that figure to stress my point not to state a scientific fact. However the figure isn't to far off from reality. i'm from Western Australia the abortion rate is 93 percent here, it is near genocide and i'm deeply saddened by it.

The big difference is that only a few people in the US opt for full genetic testing. Is it possible that this is standard in Australia? There are definite differences between countries. In Iceland almost no one is being born with Downs now.

Here's an article from late 2017 that includes the 50% number of the US: https://www.healthline.com/health-new.

 

[mama2one]

following

 

[JAM2b]

I was born with a physical birth defect and I also grew up in a family with a lot of death and serious illnesses. I went to school with some kids with intellectual disabilities and behavior and developmental problems. I worked in childcare with some children who had special needs. so special needs are something I've been aware of for my whole life pretty much.

So, while I didn't expect my own children to have problems, it didn't shock me that it happened. Disabilities and special needs are just part of life. They are a challenge to deal with and it is heartbreaking at times, especially when it is your own child. However, I never had bad thoughts about my children or despair, except when I feared they might die.

We just met everything head-on. You make yourself aware of the situation, learn all you can about it, fill a tool box with coping strategies, and don't be afraid of struggles. Just be patient, with yourself as well as your child, and keep trying and keep moving forward.

The only things that make me afraid are that my children might be mistreated or treated unfairly, or that their lives might be at risk because of not being able to process or react in a difficult or dangerous situation.

 

[ChristianGirl_96]

I was scared at first. The day in June of 2016, I was told was one of the hardest ones so far of my entire life. I was told that my son had a L1 lesion from what they could actually make out based on the ultrasound plus the skill of the tech (that is a separate issue). In layman's terms, my son would be a full time wheelchair user, due to true paraplegia. That was heartbreaking to hear. Seriously.

When we got to talk to a qualified NS a few days later, not only did he provide answers to all of my questions, he gave me hope. The original diagnosing doctor was mainly wrong. Almost three years later, my son is always trying to surprise us by surpassing all of the original predictions. That really makes me proud!

It is not all doom and gloom in my flat either. Most days I am happy and don’t even think of his birth defect. I still work. I will conclude my story by saying that time does help and so does therapy. Remember you can do this. Find a support group who can act as your sounding board on bad days. It will make all the difference. My son is one of the milder cases really.

It could be worse. I always used to tell myself this during his many different appointments and surgeries. Make the most of any opportunities cor alone or me time as well. Do research online by all means but make certain you can fully trust the source or website. I wanted to terminate when I first learned of my son’s disability now I am happy I did not.

 

[Paidiske]

I am a young adult with no children, but I wonder if you have a child with a disability, what was your reaction and how did you cope with your child having a disability?

It's a journey, and a long one which unfolds over years. My daughter has autism, and so for us there was a gradual process of realising that things for her weren't quite right, of investigation (it took about eight months of tests to get a diagnosis, and that's quick for a young child), of getting a diagnosis and then working out what that meant for who she is, what support she needs, and how our lives would change. We're about four years post-diagnosis now and that is still unfolding for us.

There's grief, of course, but there's also all the joy that usually comes with parenting and watching a young person thrive (for what thriving looks like for them). It's complicated.

I don't know if that helps answer your question?

The big difference is that only a few people in the US opt for full genetic testing. Is it possible that this is standard in Australia?

In Australia most women opt for the standard ultrasounds which tend to be the first point of screening for Downs' syndrome. Full genetic testing might be done to confirm ultrasound results.

 

[God saves]

All wonderful stories .

It's a journey, and a long one which unfolds over years. My daughter has autism, and so for us there was a gradual process of realising that things for her weren't quite right, of investigation (it took about eight months of tests to get a diagnosis, and that's quick for a young child), of getting a diagnosis and then working out what that meant for who she is, what support she needs, and how our lives would change. We're about four years post-diagnosis now and that is still unfolding for us.

There's grief, of course, but there's also all the joy that usually comes with parenting and watching a young person thrive (for what thriving looks like for them). It's complicated.

I don't know if that helps answer your question?



In Australia most women opt for the standard ultrasounds which tend to be the first point of screening for Downs' syndrome. Full genetic testing might be done to confirm ultrasound results.

Yes, it helps answers my question, thank you.

If you don’t mind me asking, how old is your daughter and how old was she when she got the diagnosis? How does her autism impact her (in terms of social-communication skills, verbal communication skills (e.g. whether or not she can speak and to what extent), sensory processing needs et cetera)? What were the issues/traits you noticed that lead you to seek a diagnosis?

 

[Paidiske]

If you don’t mind me asking, how old is your daughter and how old was she when she got the diagnosis? How does her autism impact her (in terms of social-communication skills, verbal communication skills (e.g. whether or not she can speak and to what extent), sensory processing needs et cetera)? What were the issues/traits you noticed that lead you to seek a diagnosis?

My daughter will be 8 in December, and we got a diagnoses a few months before she turned 4.

What I noticed first was that her speech was odd; she had a very big vocabulary of words, but didn't use them well. And about the time she turned three my mother-in-law took my husband and I aside and said, "I have four children and ten grandchildren" (mine was the youngest at that point) "and she's not quite like any of the others. I think there might be something wrong and you should get it checked out."

Well - we only had one child, and no basis for comparison, but when someone says something like that to you, it does get your attention. So we took her to the doctor and started an assessment process.

How her autism impacts her changes over time, I find. Her sleep is atrocious, which is very common with folks on the spectrum, but she takes melatonin each night, because otherwise nobody in our household was getting much sleep. Before melatonin she would seldom be asleep before midnight, and on bad nights much later.

Her sensory issues are not a huge problem for us mostly because we've just learned to cater to them. So, for example, the texture of food is a very big deal and the range of foods she will eat is extremely limited; but since that range does actually include fresh fruit and veg and so on, she has a reasonably healthy diet and we just give her what she can handle. (Some days I'd kill for a kid who'd just eat breakfast cereal like everyone else, but on the whole we manage it).

After a huge amount of speech therapy over the last few years, her speech is now within the lower end of normal for her age range. I hope that will continue to improve over time. Socially... she struggles. She doesn't always know how to communicate effectively, and she has that obsessive hyper-focus thing down to a fine art. So navigating, say, play time with other kids can be a challenge. She loves being around other people, but gets very tired by it. And dealing with boundaries and expectations (or even giving and receiving affection; it's not unusual for her to refuse any hugs or the like for weeks at a time) at home is an ongoing process.

Early intervention made a huge difference. Her first year of school she was at a specialised autistic school, and they worked wonders with her, and after a year advised us to move her across to mainstream school, where (with an aide some of the time) she is doing incredibly well academically.

I'm sorry, I find it so hard to condense the very complex experience of parenting and a full picture of a unique and very bright young person into a few paragraphs, but does that give you some idea?

 

[Jason Cleaver]

Our son is 24 now - and we knew he was autistic from the age of 2 or 3. He's severely autistic and has no language and only uses 2 or 3 hand signs. Not being able to communicate makes life difficult for him at times.

People say the usual "I don't know how you cope" things but it's never been anything other than a joy! I usually tell people that many people keep a large boisterous dog around the house that breaks things and makes all manner of mess, and don't have anything but love for the creature. I hope people understand the metaphor. But it's a bit like that.

We've honestly never cried or been upset. I can understand that people might go through grief and loss but it's never come our way and we're thankful for that.

As he has grown up slowly, we've had the benefit of all the firsts, and little steps for the last 20 years. He amazes us every day, has the greatest cheeky laugh and sense of mischief.

If anyone ends up in the same fortunate position as us with a special autistic person coming into their life and ever need any hints and tips or just want to talk to someone who will not be shocked or in the slightest bit judgemental - Please feel free to knock me up.

J.

 

[ChristianGirl_96]

Our son is 24 now - and we knew he was autistic from the age of 2 or 3. He's severely autistic and has no language and only uses 2 or 3 hand signs. Not being able to communicate makes life difficult for him at times.

People say the usual "I don't know how you cope" things but it's never been anything other than a joy! I usually tell people that many people keep a large boisterous dog around the house that breaks things and makes all manner of mess, and don't have anything but love for the creature. I hope people understand the metaphor. But it's a bit like that.

We've honestly never cried or been upset. I can understand that people might go through grief and loss but it's never come our way and we're thankful for that.

As he has grown up slowly, we've had the benefit of all the firsts, and little steps for the last 20 years. He amazes us every day, has the greatest cheeky laugh and sense of mischief.

If anyone ends up in the same fortunate position as us with a special autistic person coming into their life and ever need any hints and tips or just want to talk to someone who will not be shocked or in the slightest bit judgemental - Please feel free to knock me up.

J.

It is a joy to raise my son. Despite him being physically disabled we love him. I have learned a lot from him. And he is now 3 years old already.

 

[Jason Cleaver]

It is a joy to raise my son. Despite him being physically disabled we love him. I have learned a lot from him. And he is now 3 years old already.

They are a gift - not only to us, but to everyone else too!

People we meet out and about are often scared, they don't know what to say or even how to interact with someone who is different.

 

[ChristianGirl_96]

Try this

“My son can still understand you”. I find it works most of the time.

 

[God saves]

Thanks everyone for sharing! I enjoyed reading all your posts and thought they all had important points. It is very encouraging and heartwarming to hear about some of your children and about the work some of you put in to raise your own child and in one case another’s biological child.

I am believe that even when a child has significant difficulties their difficulties may still greatly improve. However, even if the severity of the difficulties remains the same, personally I believe an important thing is to recognize the value of the child or adult and to see him or her for who he or she is.

 

[ChristianGirl_96]

This is so true! I often wish I had not wasted a month in 2016 mourning for my son who was unborn at the time. I cannot go back and tell myself “things will be fine” however so I will settle for reassuring new parents.

It was right after his diagnosis day and I was slowly coming to accept he had a disability God could not fix. That was hard. But the lesson I have learned is that God is always by your side even in times of crisis.

 

[God saves]

This is so true! I often wish I had not wasted a month in 2016 mourning for my son who was unborn at the time. I cannot go back and tell myself “things will be fine” however so I will settle for reassuring new parents.

It was right after his diagnosis day and I was slowly coming to accept he had a disability God could not fix. That was hard. But the lesson I have learned is that God is always by your side even in times of crisis.

Thanks for sharing! I think that your comment that “God is always by your side even in times of crisis” is an important one.

May I ask what do you mean by “I was slowly coming to accept he had a disability God could not fix“?

 

[ChristianGirl_96]

Sorry for the confusion!

Three years ago a doctor informed me that my son would have a permanent disability. I was in shock at first. It was unexpected. Over time, I slowly embraced our new normal with help from a therapist and prayers.

I begged the Holy Spirit to fix him. I wanted God to cure him. At night I prayed to Him to help my son. It took me six months to accept that the Lord could not change things. Now as I reflect, I ask myself “Do I want God to intervene”? My faith has been strengthened by that and so has my relationship with Him.