How to cope... :(

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Cookies123

New Member
Hi all

i have a 3yo son and he is gdd. Even though he is improving daily due to attend special school and therapy session but I'm still worry. Whenever I think of his future it like so depressing. All the fear just crawl in . Things like what happen when I not around, what can he do when he grow older , how to prevent him getting bully or tease by others.
I really scared n worry about the future. I have no one to talk as most of my friends kid are normal. They couldn't really understand the fear I'm going thru
what can I do to plan for the future for him..
 
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Pocoyo80

Member
Hi cookies123,

I also have a special needs boy. He is 7 years old now. Perhaps, you may have read about my story in another thread. What i can say is don't give up on them. GDD is developmental delay. At least, the comforting part is they are not life threatening. If my son can do it....i believe your boy can also acheive it. Your boy is now 3 years old and it will help him alot to persist with all the therapies. As long as he shows improvement, don't lose hope...

Whatever the milestones that my son have acheived don't come easy. He used to have a lot of therapies and all my annual leave are reserved only for him. I am a full time working mum, cannot afford to stop working as his therapies are all very costly. It will be very heartening to see that he cleared all the milestones to reach what he has acheived today. When we heard of his diagnosis , we have never imagined that we could one fine day, start him on mainstream and bring him to travel as his immune system is pretty weak. But, he cleared the hurdles and our family just returned from a long trip in Aussie during the June holidays. I told my hubby... is like a dream come true and whatever efforts that we have contributed in him have been rewarded. My boy still has more hurdles to cross..He still has heart issues and the recent visit to the cardiac specialist says that he may need to go for a heart opt next time if the regurgitation in his heart gets worse. I am worried as well but i tell myself that i will fight this battle with him if he really needs to go through the opt. He is under the learning support program in his primary school and with the coaching support at home and also thru his school teachers, he managed to pass all his papers so far. Primary school teachers are now more aware of special needs kids and MOE have also came up with this learning support program for kids who are academically slower. I find the program very useful for my boy as is a smaller group and he is not overly stressed with the faster teaching pace in class. I always set short terms goals for him and it motivates him and me as well, whenever he acheive those goals.

My son is diagnosed with di george syndrome, born with congenital club foot and has congenital heart problems.
 
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Pocoyo80

Member
I am glad that it gives you hope. I must say the journey is not easy but be thankful for every improvement that comes along. My son is not really independent but I have been very upfront on his condition with the teachers in school so that they know how to manage him. He has his tantrums and he also face learning difficulties. When he started his p1, I worry for him everyday in the office. Fearing that he may get bullied, crying in school or perhaps burned himself with hot soup in the canteen! I just can't bear to see him facing the stress alone and crying out for help. Is not easy for him to adapt to the primary school life but is assuring to know that the teachers are watching over him and updating me on his behavior and progress in school. So far, he adapts well in school and it has become a routine for him. He made friends and is happier to be in school. I am just thankful that he has a chance to study and his teachers are all willing to lend a helping hand to him. I have a p3 boy as well and my family has no maid. Both boys are attending studentcare daytime whilst me and my husband works full time. All my spare time are all devoted to my family but is really well spend as long as they are happy and healthy!

Just to share my son attends intensive SLT at communication for life for about a year. His speech was also very delayed. He started speaking in full sentence after 3 years old. He changed his therapists twice. He also faced problems in chewing which was the reason for his delay in speech.

Feel free to PM me if you need a listening ear
 
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KidsMonde

New Member
Hi Cookies123! Don't lose heart. I have an autistic son who has shown so much improvements now. I do dietary interventions, supplements, homebased therapies and brain training. Do not give up hope on your child. He is only 3. It is unfair to give him a 'death sentence' before he can prove to you what he is capable of. You will not be where you are today if your mum had given up hope on you, right? Give him fish oil and cod liver oil for a start to help his brain development.
 
Angelmum

Angelmum

Moderator
Worrying is normal. If parents don't worry about their special needs children then that's weird.
Normal friends or relatives are hard to relate because they are not in our shoes to visualize or feel. It can be quite hard to explain to them the diagnosis, fears and worries.

This forum is set up so that special needs parents in Spore know you are not alone. You can chat here or post questions, whoever faced that issue before might be able to give you advice.

I have been a special needs mum for almost 12 years ... still learning and trying not to get frustrated with unwelcome looks from the public (see below) +uncaring PAP. This is a life long journey to be shared by you, your hubby and child's sibling (if any).

I think most parents would agree it is a tiring and endless task raising & caring for your child with special needs, not forgetting the mental fatigue and helplessness, being the only 'unlucky one in the family'. It took me some time to come to terms with my daughter’s rare diagnosis/disabilities, tears are what I called 'those were the days'. It is a lonely life being the parent of a special needs child because you are unusual in your 'kampong'.

An outsider can't contribute much to a conversation or growing up process of a special needs child/family. For my sanity, I connect with other special needs parents and have a private blog to vent. What I want to say is, try to make yourself happy. Nobody will treat your fatigue, fears or unhappiness. You're the doctor and the psychologist! Many things are unplanned along the road and don't pin high hopes. The more you hoped for, the disappointment could be greater. Be less harsh to yourself and child.

Hopefully Early Intervention can help your GDD child. If child makes improvement, you'll feel you've accomplished something (that mission impossible feeling) and be happier.



Angelmum said:
Below are copied, to read in depth, click link (Julia Roberts)

We have the one or few that really bug us, most of us agree that most people who say these things aren’t mean spirited people. They simply don’t understand what they are saying is hurtful, annoying or bothersome. Maybe if we share this post with people in each of our lives, we’ll educate people on what we’d find helpful NOT to say to us…

- God only gives us what we can handle; He must think you two are special parents
- Using the word “Austistics” to describe people on the spectrum.
- Remember, you have to take care of yourself, so you can take care of them.
- When looking at my son using a reverse walker, “Wow, we need to get one of those for my (typical) 10 mo old so he/she can walk better!”
- They’ll EAT when they’re ready. They’re not going to starve to death.
- Pointing out that my non-walker shouldn’t be in a stroller, not knowing he can’t walk.
- That my child is just playing us.
- They just need discipline.
- You two are amazing for adopting two special-needs children. They are SO LUCKY.”
- Family and friends that downplay a diagnosis.
- For a child that has tics, saying, “Do you think she is doing it for attention?”
- Anything that implies that sensory issues are not real or that we’re playing into their “fear.”
- When people say they are sorry or offer condolences for a child with disabilities.
- Any comment that starts with “If you would just…”
- What’s wrong with her?
- Don’t worry she’ll catch up.
- She’ll grow out of it.
- Is your other son/daughter “normal”? or “Are your other kids ok? (As if to imply the child with the disability is not?)
- You are so much stronger than me and/or I don’t know how you do it.

The YES! SAY THIS!…
- I’ll be over on Saturday to help do laundry/wash dishes/scrub floors!
- How are you doing? (and actually listen to the answer)
- How Can I Help?
- I just made an extra dinner when I was cooking for us, can I drop it by now?
- I know you had an appointment yesterday, how did it go?
- Want to drop your kids off with us for an hour or so? (Because people are afraid to take care of my kids, when this happens, it feels like acceptance and support.)
- I’m on my way to the store, want me to grab you some milk or bread?
- I’m coming over to watch the kids right now for an hour so you can take a nap.
- We’re on our way to take care of the yard work.
These are just a sampling of what some Support for Special Needs parents preferred…obviously, we’re all different and some on either list may or may not resonate with a particular parent of kids with special needs.
Click to expand...
Angelmum said:
It seems like as my girl grows older, more and more people like to judge us with unkind remarks and giving me the black/disgusting face - I'm a lousy mother who 放纵我的孩子 疏于管教 lack proper parenting and disciplinary action in public places. :weconfused:
View attachment 125318

Govt talking about graciousness and an inclusive society. Can you feel these?
Click to expand...
 
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KidsMonde

New Member
Hi Angelmummy! You have been a great support for many. Yes, it seems like a lonely journey but like what you say, there is an extra pair of footprints on the sand. As I recall and relate my childs's behaviour since young, i really want to kick myself hard for all the symptoms I have ignored. My son was a classic case of autism. He could not sleep from birth to the time I implemented strict diet. He threw himself unto the sofa, jumped around, minimal eye contact, not respond to names being called, kept watching same shows over and over again and had poor social skills. I think autism did not ever cross my mind. I was in denial for the longest period of time. When the PD told me she suspected autism, I did nothing till I enrolled him into a nursery class and he got kicked out. That was when he was 3.5 years old. I went through a lot of inner struggle, tears and sweat, looking at what can be done for him when doctors said that nothing can improve his condition except for OT/ ST and early intervention. I 'fought back' against what mainstream thinks about autism. I spent hours and hours each night to look for answers. I watch my son outgrow some of his behaviour and learn to communicate. Though life has not been easy, I am still thankful for what has been given to me by God. I am now thankful for the little things in life which I would have otherwise be contended about or taken for granted. I describe myself as the wolverine. I am hurt by what people say, think, my own thoughts, my child's behaviour but I heal very fast. i do not allow myself to sink into depression. In the past, I even thought of jumping down with him since he had so many issues. This thought crossed my mind many times, whenever I cannot control him. I did a lot of self reflection. How could I be so cruel and deny him of a chance to live? I am no different to those children who cast their parents aside because they are old and useless. In the end, I picked myself up and did all sorts of things. I still get depressed or upset when things do not go the way I want it. I take it as a learning opportunity, tweak my formula and continue my journey... so mummies, be strong!
 
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