| T O P I C R E V I E W |
| LouisvilleMom |
Posted - Feb 16 2012 : 5:45:11 PM
Anyone else? I am on my way to Cincy Children's tomorrow to see lotsa specialists. Yippee! It is exhausting being a parent but having one with special needs is like having quads.
SAHM mom to four great boys.
http://ksfarnsworth.blogspot.com/ |
| 16 L A T E S T R E P L I E S (Newest First) |
| FARMALLChick |
Posted - Mar 09 2012 : 10:15:34 AM
Kathryn, Don't ever feel like you are whining. I have an Aspie that will be 12 in April. It's been a struggle to say the least. We started noticing "things" when he was about 18 mos old. He was 7 before he was finally diagnosed. He was kicked out of preschool, elementary school and K-12. It has taken us years, dozens of doctors, medications, and even a 6 month stay in a hospital, but I think we are on the right track now. You can email me anytime if you want to.
You are your child's best advocate and I am sure deep down inside he knows you love him. Hang in there - we are here if you need us!
Lora
If it ain't red, leave it in the shed.
www.CountryFriedAcres.etsy.com
www.farmallchick.blogspot.com
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| J.F. Brown |
Posted - Mar 05 2012 : 10:13:56 PM
I know I am late to the conversation, but yes! My son is 32, has autism and intellectual disabilities.His language was late, and remains a bit odd, but he's chatty now.He was a cuddly, huggy baby, but not so visibly fond of mom for those school years. Now, he shows his love by making me coffee, or fixing dinner, or just a question about my work-day.
There are groups for siblings of people with disabilities- my daughters did not have the option when they were young, but my eldest DD is trying to get a group together for adult sibs, with a thought to reach out to younger sibs at some point.
There were some days/weeks when I really felt heart-broken for my son, and felt so overwhelmed, but he's a great guy, and so mush more expressive, competent and part of the world than I dared hope when he was 3 or 13!
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| sjmjgirl |
Posted - Feb 20 2012 : 8:30:33 PM
Just wanted to share this link with everybody. We got an iPad this Xmas and I think its really helped my son. Lots of applications geared toward social skills and vocabulary building.
http://thegazette.com/2012/02/17/touch-screen-tablets-help-connect-autistic-kids-with-their-families-and-world/
Farmgirl Sister # 3810
Learn the rules so you know how to break them properly.
- Dalai Lama |
| Dorinda |
Posted - Feb 20 2012 : 06:27:40 AM
Kathryn, My son was the same way. He developed Aphasia with his seizures. Had to learn sign language for a while. Lots of speech therapy. They had a group called the a-team that helped him get an electronic device to speak for him. He did not like using it so that did not last long. Believe me when I say your child loves you no matter what and needs you there and family support. It is very heart breaking to watch your child struggle with this. My son still struggles with communication. When people talk to him and he does not respond back they think he is being conceited or rude. My husband has this favorite phase that he tells people . He is just a man of few words. That use to be a saying people used back in the old days for men who did not communicate much with their neighbors. A man of few words.... I remember feeling just like you. So i kind of isolated my self here on the farm and focused strictly on him. It is hard to take advice from people who do not know what is going on. They only see the outside not the inside of your child. You are the only one that knows your child inside and out. It is hard for friends and family to understand when they have never had to raise a child with disabilities. They have no idea what is going on in your mind and heart. Believe me he cares very much that you are there. If you left it would greatly effect him. As far as the older brother I would keep doing what you are doing there as far as keeping as much burden off of him as you can. I know as a mother how hard it is to split your time up among all the children especially when there is a special child mixed in. But in the end when they are all grown up it all seems to fall into place. Things will turn out just fine. Remember to take time for yourself every now and then. It helps with the stress level. I hope this is some help for you. God Bless....
Seize The Day!
Dorinda |
| LouisvilleMom |
Posted - Feb 19 2012 : 8:12:00 PM
What really breaks my heart is that there is nothing wrong with him cognitively. He has severe apraxia and never calls me "mommy" or says "I love you". When I take him to one of his many specialists we don't talk on the drive and there is so little connection compared to my other sons. It kills me that I don't know what he thinks of me. Does he care if I am there or not? Would it even matter to him if I left? I have no idea unfortunately.
My oldest son has to pick up so much responsibility that his peers do not. I worry about the affect on him. He and I went to England/Scotland last April and it was wonderful to have that time with no worries and distractions. I try to keep the burden off him but it is unavoidable.
SAHM mom to four great boys.
http://ksfarnsworth.blogspot.com/ |
| tanimon |
Posted - Feb 19 2012 : 6:21:59 PM
I can SO relate! My 18 year old son is developmentally delayed, cognitively impaired and has juvenile idiopathic arthritis (formerly known as juvenile rheumatoid arthritis). Everything seems to take three times longer than for anyone else. Instead of the "terrible twos", we had the twos, threes and fours. But, the way I look at it now, that means we can enjoy Travis' childhood longer than most, too!
On rough days I refer to a story I read about my favorite musician, Rich Mullins. His sister had a child with special needs, and was depressed and angry. He called her one day and said (this is paraphrased) "I'm so proud of you. God must trust you very much to have entrusted you with this very special child." they have special needs, but always remember, they ARE special! |
| Dorinda |
Posted - Feb 19 2012 : 5:44:35 PM
Hi Kathryn, I have a son with a seizure disorder. (Epilepsy) He is now 21 years old. Very scary situation when he was a little boy.
I use to have to drive to Orlando to the Nemours Childrens Hospital. He went to lots of specialist and therapist. Not to mention Nurologist. He still goes to the Nurologist every 6 months. He is a wonderful gift from god. He is the most kindest and sweetest young man you would ever meet. It gets a lot easier as they get older. The school told him he would never drive. I remember I was so mad at them for telling him that. He does drive and he just finished a program in culinary school geared toward people with special needs. We have him with a job coach that is trying to help him find a job in the food industry. I am a very positive person when it comes to special needs children. Most of them learn to compensate for their disabilities as they age. I feel that God only gives special children to people whom he knows can take care of them. I feel so blessed and lucky that I gave birth to my special son and God chose me to raise him. He also has a girl friend who loves him dearly for his kind heart. He will always be on seizure medication for his whole life and he understands that. I remember when the Nurologist told us he had Epilepsy. He was 8 years old. On the ride home he ask me why did God do this to him. I told him that god loves him and so did his Dad and I. That not every one is perfect. There were lots of children with all kinds of problems. Diabetes, physical disabilities, ect.,and even children with cancer. That he was lucky all he had to do was take a pill twice a day. And he would be just fine. And that his Dad and I would always be there for him. By his side through thick and thin. And that we have. We have stayed very positive with him and very encouraging. Lots of work but it has paid off in the long run. Remember God will never give us more then we can handle. God bless to you and your son........
Seize The Day!
Dorinda |
| ddmashayekhi |
Posted - Feb 19 2012 : 05:42:51 AM
My 8 year old son is ADHD and mildly autistic. It is a ton of work and running around for us. I understand fully the aggravation of trying to schedule appointments with specialists of any kind. Consistency in those appointments never happens.
I try to celebrate each good behaviors day. We had to change our son's schedule when school resumed in January after the holidays. He goes there from 9-12:30 and then Pick up him after work (I have to be to work an by 7 a.m. for this) to homeschool him the rest of the day. This is on top of trying to sell our house to move to a better district, deal with the tons of complicated matters for my late parents estate and deal with greedy siblings who could care less. My goodness, talk about whining here!
The important thing is finding out your child's needs when the child is really young and then doing what works best for that child & the rest of your family. It is difficult to juggle it but many parents assure me that things do "get better". I have learned to do my own research and observations, they are much more accurate then behavioral therapists or school staff.
Good luck, prayer helps a lot. I mostly pray for patience!
Dawn in IL |
| Farmer Judy |
Posted - Feb 18 2012 : 10:40:37 PM
The way I got thru long drives with my boys when they were younger was using a video or dvd player, now that they are teenagers they have ipod touch for music and games. They don't get into much mischief when they are occupied.
God bless,
Judy
Farmgirl #3666
Born a city girl but a farm girl at heart!
http://farmtimes.blogspot.com/ |
| kristin sherrill |
Posted - Feb 18 2012 : 8:42:07 PM
It takes very special people to have special people in their lives. It sounds like your days are very full and busy. I applaud you all for all you do for your kids each and every day. I pray that you all have strength to do all you have to do. I have no idea what your days are like. I can only imagine you are exhausted at the end of the day. Reading these posts, I have no reason to complain at all.
Kris
Happiness is simple. |
| Sheepless in Seattle |
Posted - Feb 18 2012 : 8:23:42 PM
You are not whining! Every mom has their bad days typical kids or special needs kids! Is it a long way to get to Cinncinati Children's Hospital? It takes me about 45 minutes to get to Seattle Children's. |
| LouisvilleMom |
Posted - Feb 18 2012 : 5:12:06 PM
Thank you for the comments and Paula I will stop whining. That is a full plate! I am just down a bit lately. Driving to Cincy is depressing because I have to (again) hash out what he can and can't do and while driving we cannot have a simple conversation. He is not mentally delayed but does not have very many words and is on the spectrum.
Sometimes it just gets to me and I feel sorry for myself but time to "woman up" and keep on keepin' on!
SAHM mom to four great boys.
http://ksfarnsworth.blogspot.com/ |
| Amie C. |
Posted - Feb 18 2012 : 09:35:56 AM
I don't have kids myself but I grew up with two special needs siblings. My parents adopted two babies with Down syndrome back in the late 70s. I don't remember them having a lot of specialists to go to, but that might be because there were and are a lot of resources in our area for children with special needs. It's part of the reason my parents were approved to adopt at a time when that wasn't really the norm. My siblings were both born in NYC, but strangely enough we had better resources at our disposal here?
My brother and sister were fortunate enough to attend a private school specially for mentally retarded children (sorry, I'm still using the old term because it was the new term at the time--some of the books my family was given to read during the adoption process were still referring to them as mongoloids).
I get the impression that having a kid with Down syndrome can be easier in some ways than having a kid on the autism spectrum. There seems to be so much more to figure out and negotiate with the public school system, whereas Down syndrome is a more clear-cut diagnosis. Or maybe being a parent is a lot more complicated in general than it was back in the 80s.
I've been thinking a lot lately about what a strange experience it was to grow up in a family like mine. There's a lot I would like to know historically about the early days of special needs adoption. |
| Sheepless in Seattle |
Posted - Feb 18 2012 : 08:43:15 AM
I have a daughter with Down syndrome and Autism who is now 15 and a son who is 20 with Tourette's syndrome, OCD and ADD. The pace ebbs and flows. There are times where there are a lot of doc appointments and then there'll be times where there aren't - those are harder to recognize because you're actually busy living life instead of trying to entertain a kid in a waiting room. Take it one day at a time and don't borrow trouble from the future. Blessings to you! |
| Farmer Judy |
Posted - Feb 16 2012 : 9:45:15 PM
Good luck with the appointments coming up. I went the way of psychiatrists and counseling for my aspie. He was diagnosed at 9 years old and he is now turning 14 in June. We have been thru a number of shrinks but he is doing quite well right now. In the meantime he was diagnosed with bi-polar and that threw everything up in the air. I read quite alot about diet and suplements but have only skimmed the surface with going that route. It may be a long journey but in the end it is worth it.
God bless,
Judy
Farmgirl #3666
Born a city girl but a farm girl at heart!
http://farmtimes.blogspot.com/ |
| sjmjgirl |
Posted - Feb 16 2012 : 8:02:42 PM
Yes, I do. My 10 year old son has a mild form of autism. I know what you mean about specialists. Half your time is spent in the waiting room and good luck trying to reschedule if your kid is sick or something. Anyway, hope everything goes well tomorrow!
Farmgirl Sister # 3810
Learn the rules so you know how to break them properly.
- Dalai Lama |
