My 2 1/2 yr old son Boston was diagnosed back in may with moderate Autism. It all happened so fast that my head was spinning. May 3rd I took him in for a ped appt because I thought he had another ear infection (waking up screaming alot) By the end of the appt his ped confirmed no ear infection but said she was all of a sudden seeing Red Flag for Autism and wanted him evaluated. We immediately started jumping through hoops going to ST OT and Birth to Three, then last appt was at childrens Hospital in seattle. that was may 23rd. He was diagnosed that day. Between the dr appt and the diagnosis I went through steps of, 1)denial hoping for only sensory integration issue-2)researching while crying ALOT! 3) Mad 4) Worry about his future and more crying then finally 5)accepting and knowing that I cant fix it no matter how much I want to reverse it I cant! And learning everything possible to help him be comfortable and make prgress. He is doing OT and ST once a week and is about to start birth to 3. He is getting better with speach, engaging play, and refferencing. I am seeing a difference since strarting therapy. Although I feel like he is growing and I am losing myself. Since May I feel like I am not myself anymore.. I feel like there is this heavy cloud over my brain and I cannot lift it. I cry once in a while but not overly sobb in saddness. I have always been the type to have my house clean, laundry done and dinner on the table when the hubby gets home but not lately. My house is unorganized and messy (not unsanitary) just messy, piles of laundry. I wake up every morning thinking I am gonna get organized and by the time dinner is done and both my boys are in bed I am exhausted, sad, and irritated that the house is still in dissarray! I cannot concentrate, and have been having anxiety attacks! What is wrong with me!? why cant I get my head back together! I hope I am not like this forever! Usually I keep a tight schedule and have everything done as I am a sahm but not myself anymore! Even my husband and 4 yr old have noticed! How do I get myself back!!!
Andrea, Stay at home mommy and wife of Boston 2 1/2 autistic, Taedon 4 oddly advanced in all areas and hard working hubby. ↓
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| Name: Edwardliu | Date: Aug 22nd, 2011 1:38 AM |
Hi
Bosons-mum,
It is the normal feeling like that when any of our son get Autism diagnosed. We all fell very stress, sad, mad, can't sleep. Thinking about his future. Everyone struggle and the family start to fight. We all lose our temper. I nearly want to kill myself. Suddenly our world is changed and nobody want to help us. We lose a lot of friends because they scare of our son. We think we have no hope. But calm down. Don't do too much research for it. We need a good sleep and we can help them. Also remember our son is important and our husband is important too. Give yourself some time to talk to him. Also you have another son, he will help you.
My son get diagnosis when he is two and four months. He is very bad that time. Even in the early intervention, he can't do anything. I find totally lost that time. Specially when people tell me just to teach him to eat and dress himself. Look like he has no future. He can't speak, he can't do anything. He can't understand anything you said. When I talk to a old lady who has adopted one autism child, I cried a lot. She just tell me you just treat them like the normal kid. Ignore their bad behavior and try to follow their needs. Such as her adopted son only like throw the stone over the fence. She just let her own six children do the same thing. Now her autism son is over fifty years old. Married twice and have no children. Working in the army. That time they don't have ST and OT. She just tell me everything would be fine. But I don't believe my son get well.
I am lucky to find the DAN doctor. We do gluten and diary free for it. It improved my son sleep and has better temper. We did ST and OT once a week. Still very slowly improved. Then we get his hair test, he got high mercury. Then DAN doctor gives him cod liver oil, DSMA but we need to do a lot of blood test to make sure he is not hurt. Then he improved a lot in his speech. Say the single word. Then he can say I want xxx. Then we use M-b12 injection for him, I find this one improved my son a lot. He start to become chatted box. But still sometimes hard to answer the question. Then we use epsalt to bath him. Now he is four years and eight months. Nobody can detect him easily. He can read all the book, he can do math, he can answer the question. He start to make his friends. He still need us to remind him don't repeat the topic. Once, twice ok, three times you lose your friends. He start to do some normal kid worksheet. I take him to the swimming class and I don't mention he is autism. They do assessment for him and don't know he is autism. He is happy to go everywhere. (school, shopping center). Still sometimes he is easier to get upset than the other kid. But who cares?
Remember my two and half years stress, it is very hard. Sometimes I ask my ST, I know he will be OK in the kindergarten, grade 1. But how about in grade 4. She tells me he maybe find it is difficult to understand the poem. But others he will be fine. It gives me so much relief.
I think we must believe our son will be normal one day. We must try other parents experience. ( DAN doctor, ST,OT,sound therapy, animal therapy(dog)). I suggest you only go to TACA (talk about cure autism) web site to have a look. It made you feel better and reduce your stress. Also remember using your other son to teach autism son. It sometimes better than ST and OT. I use my little daughter to teach my son all the time and it saves me a lot of money.
Take a break on one weekend day. Let your husband to take them out to play or you go out to have a rest. Rebuild energy is good for everyone. In our family. Don't yell and shout to your husband. Sorry I do that before. Because our son has problems, it is easy for us to shout. sometimes and easy to shout to our other family me members too. When you are very mad, don't hit your son. Just leave him in a room or a arm chair to think. It is very important for your son always trust you.
House messy is all right. When he go to pre school, you can clean it. Sometimes when they watch TV, don't forget give yourself a drink and a snack. We always forget to take care ourselves. ↑ |
| Name: Bostons-Momma | Date: Aug 22nd, 2011 4:22 AM |
| Thank you for your response! It did make me feel better.. I sapose as he gets better I will also get better. My hubby and I dont argue very much at all but he holds in his feelings about everything so it is hard to talk to him about Bostons Diagnosis. I will look into the website you suggested. I have hopes for him and pray that he will get better. What is a DAN doctor?? and how do you get the B 12 injections, what have they helped? his mood, behavior, skills? I am still trying to learn as much as I can.. I am thinking I should maybe ask my doctor about anti depressants so I am not so moody and depressed all the time. ↑ |
| Name: Edwardliu | Date: Aug 22nd, 2011 11:25 AM |
DAN means defense autism now. Normally doctor think autism can't be cured. Like my first daughter who is studying medicine now tell me autism can't be cured. But DAN doctors have different opinion. You can get the B12 injection from DAN doctors. They can improve a lot of language skills such as talking, listening, understanding. When they understand more, they behavior better. Some of my friends son can't reponse to M-b12 well at the beginning. They find their child can't sleep well. But when they get used to it, they improved a lot in language and they sleep OK. When my son has new medicine, he always has some bad behavior first. When his body gets used to the medicine. He improved all his skill, motor, language,reception skill. Don't think it would straight ly fix the problem. It takes time. It takes me two and a half years bio-medical treatment for him and I can see the good result. And from the beginnin, I never believe I am the lucky one who can help my son out.
Husband always has different opinion with the diagnose because they are not working with their children everyday. I find maybe just do as they do. Just think our children is delayed and teaching them using all the teaching autism skill. Also don't forget cure them. Even they can't be totally cured, but they can go to the normal life. I think it is very important to do it before 4 years old. The early the better.
Also I think when you get stress, Medicine may help. But all the depress medicine have side effect. Don't relied it. Calm down and think. That always my hisband tells me. Your stress can't help anything. I know it is very hard to go to anywhere when they are small. And it make us too much trouble at the beginning. But one day, maybe they just OK. Remember all my stress, it is very hard. That is why I come to this web site to tell the young parents there still have a lot of hope in the world. Just try it. I am very happy with my son at the moment because I think he tries his best. ↑ |
| Name: Proud Mama | Date: Sep 4th, 2011 4:44 AM |
| Hi Bostons mom! I have to say THANK YOU FOR THIS POST! For the first time since May I don't feel alone! My son was also diagnosed in May. I also usually run a tight ship and am a stay at home mom and since we started E.I. My life has changed. I feel like I can't catch up on anything. My life and house just seems disorganized! I am feeling like I don't know who I am anymore. I have good days, ok days, bad days, and then what I like to call "Those Days" (in other words horrible days). I am trying to juggle five days of therapy, doc appointments, my 11 month old, the house, errands ect... It gets to be completely overwhelming that by 9pm my brain is mush! It is just nice to see I am not the only one in this position. There are no support groups locally where I live and my family is out of state so I am often on my own. So thank you again for showing me I am not alone! ↑ |
| Name: samktabor | Date: Sep 8th, 2011 9:13 PM |
Hi Bostons-Momma,
I'm a Special Ed. student at Mississippi State University. I would like to give you some encouragement. You seem like the best mother a kid could ask for and even if your child isn't able to show how much he loves and appreciates you and all you do, he does. Believe me. You may already know, children with Autism do not have to social and emotional skills that other children do. I know you're exhausted but the best thing you can do for your child is to be prepared and be there for him. Teachers and parents alike need to be advocates for these children and I have no doubt you will always do that for Boston. I hope you continue to stay strong, even when it gets hard. You are doing great! ↑ |
| Name: Gabbys Mom | Date: Sep 17th, 2011 11:28 PM |
| My autistic daughter is 16 now but I still remember feeling exactly how you do. It's a lot to take in and learn about. Autism is like a roller coaster..You have your ups and your downs. Talk with family, friends and your doctor. i know a lot of parents with autistic children and they have all said they have gone through what you are feeling. Don't be so hard on yourself. There are times I don't cry for years and other times I cry every day for a week... so what if during that week your house isn't spotless. hang in there, you can do it. Hope this helps ↑ |
| Name: Grandma Karen | Date: Jan 16th, 2013 11:30 PM |
Andrea,
We are all unique special individuals, so are our autistic children. Some autistic children benefit a great deal from behavioral and occupational therapies, others from shots and altered diets. Altered diets do not work with the picky eater autistic child. Shots do not work with doctor phobic children. Andrea, don't worry about housework. It is very hard to have the spotless home with an autistic son and a toddler. You have a long journey and need to pace yourself now. You may have to change your view of yourself. Think that your head is on straight for the conditions that you are challenged with. Breathing, meditation, muscle relaxation, and awareness of one's own thoughts help to control panic attacks. Life is different for you, your husband and children. Take everything in stride and always ask how important is this matter that I am stressing out about. I have experience all of your emotions and then some. I raised my seriously autistic grandson until he was almost 12 yrs. old. I finally could no longer provide a safe, sanitary environment for him. He has been in a group home for 2 months now and words cannot express my sadness, but it was best for him at this time. If you would like to Email me you can at [email protected]
Grandma Karen ↑ |
| Name: chuckmett | Date: Nov 3rd, 2014 8:22 AM |
| Hi bostons mom, My daughter is 2 1/2 also my wife and I are going trough this. Our PED became concerned during the check up during the 1st yr 1/2. Maddie has been in OT and ST for a yr she's currently on a waiting list to be evaluated. Her play and interaction has gotten somewhat better, she still isn't talking but her sounds and banter has improved. But still a long way to go. To touch on what your subject. I have found its hard to do the daily routines when most of your day is focused on being and interacting with them. For me on my days off laundry is 1 of my chores and I find difficult sometimes to finish sometimes get started. Same with cleaning you clean 1 mess and have 3 others. For my wife my daughter is more connected to her so my wife can't even go to the restroom with out her her flowing or flipping out about her leaving the room.what sucks is we always have diff days off and diff hours which I miss out on a lot or even helping. But my daughter is great. But there's alot we still don't know. But I digress I think getting back to normal will never be. Just like a austistic child routine you have to creat a routine that works for u and your child that works. And works for your family. I'm still trying to find that. I'd like to talk more and ask some ? And that go's for anyone reading this. ↑ |
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