Time Has Passed

It has been quite awhile since my last post about Gabriel. It has been 10 months since he was diagnosed with Autism, he is now 4 years old. Life has changed quite a bit for us there are a lot of supports that we had to get in place for Gabriel when he first became diagnosed and all of his therapy became very intense.

He was set up with a social worker after being diagnosed, she forwards us to a behavioral interventionist company that helps kids with autism. We set Gabriel up with them 5 days a week for 2 hours a day initially, his speech session tripled and now has weekly speech sessions for 1 hour, he recently obtained a occupational therapists to help him deal with all of his sensory concerns. He also has a support worker with him at the daycare everyday for 6 hours a day to help him deal with the social environment. Since Gabriel has been in daycare from 2.5 years till now it has actually helped him learn to cope with his autism. Being forced into a social environment all day has helped him overcome a lot of issues most autistic children have. It has helped his speech significantly because he forced to talk to get his needs met. Honestly I feel like daycare, a really good daycare, should be part of the therapy for autism, it has probably been one of best therapies by far.

We started to potty train Gabriel last May, basically we just took his diapers away completely and prepared for a lot of accidents. For night times we never let him use a diaper he got cool new pull-ups with his favorite characters on them for bed time. He has not seen a diaper since we took them away. After about a month he started to get the hang of it and we got his schedule down. Autistic kids learn completely different, so it is normal to expect  a them to learn how to be potty trained during the day in about 1 year. It is coming up on May very quickly and Gabriel is right on mark with what is his normal. He is pretty much trained during the day and has maybe 1-5 accidents per month now. He still has to be reminded and taken to the bathroom at regular intervals and cannot be relied on to remember on his own, sometimes he is able to make it on his own though, just not consistently. I am not even concerned about night time training maybe after May we will start looking at strategies for it, but honestly it's not a big deal for me. I am just happy he sleeps all night and I am not sure I am ready to get up with him in the night and change him and his bedding because he has an accident.

Things are running pretty smoothly now I send out regular monthly newsletters to everyone that is working with Gabriel and what strategies all of the different groups are currently using. If anyone has any issues or questions they need to talk to me first and I will usually come up with a plan to address whatever the concerns are and the monthly email will be sent out. It has been a lot better having so many people involved running the process this way because all of the different companies do not know what each other are doing, or there maybe issues between two groups working together. I found this the best way to keep everyone happy. I have had to kind of take control of the situation and be the hub, which i feel is for the best because I am Gabriel's mom he is my kid I should be running things.

Things are going smooth now but Gabriel will be starting school in fall of 2015 and that will be a new battle because his autism funding is cut by 70% which is all given to the school system. I am unsure if i will have to fight to get his speech therapy continued in school and also get his a teachers-aid. I know i want a teachers aid for kindergarten for sure. We will re-evaluate his needs after that. Gabriel will be re-assessed by the autism diagnosis team before he starts school to get a more accurate diagnosis than just mild autism there are different forms under the spectrum so I am hoping Gabriel will be diagnosed with one of the more specific conditions so that his therapy can be even more specific. Once he is more specific I will have a better idea what his life will be like and can look at other cases similar to his. As of the moment the last diagnosis i received they told me that Gabriel is mildly autistic and is mentally retarded. I honestly do not agree with the mentally retarded statement because I contribute him lacking in those tests due to his lack of language and understanding of language. He was not able to perform the tasks he was asked to do because he was not able to understand what they asked him to do. I saw a girl with autism competing for miss America and she was able to overcome the symptoms associated with autism it has given me a lot of hope for my son having a normal adult life.

How have i been doing with his all? Well I don't cry very much anymore, just randomly when I sit back and think about all of the "extras" Gabriel needs it gets a little overwhelming and I tear up. I haven't actually cried though just randomly tear up when I actually think about it. I am trying to take a positive approach to this whole thing though. I was listening to a lady at church talk about her friend whose sons has autism and how that lady blamed God for making her son autistic and how angry she was at God about the whole thing. I was just taken back in my seat because it has never occurred to me to even blame God. I am a Christian and honestly I feel like God chose my husband and myself to have this special boy in our lives because it was what we needed and what we could handle. He gave us a great responsibility with our son because he believes in us. Gabe is special, God knew he was going to be special and he gave him to me. I feel like no matter what Gabriel was going to be born into this world and I am honored I was chosen to be his mother. He has made me a better mother and wife, he has changed how I parent my children drastically and I am better for it. In such a short time he has changed who I am so much and I am hoping I can return the favor and not fail him as his mother. He is just perfect how he is, i would never want to ever change him. I still hope that he learns the skills to cope with the world around him and is able to function in society. But the parts of the personality that make him, him I love so much. The difficulties that Gabriel has is not because he is a bad kid it's usually from being over-stimulated, tired, hungry, or he is out of control of the situation and having a difficult time with it. He is never being difficult because he is a bad kid, he is actually a really sweet caring little boy who lacks the ability to communicate what is happening inside him with the world around him. I understand his frustration not being able to say the words he needs to say... I see him trying to say something and I can tell he knows what he is suppose to say but just cannot get the words out of his mouth, and the relief he has when I give the word he is looking for to him. It is those moments where I watch him struggle that my eyes tear up, something so easy as speaking is difficult for him and he has to work so hard and keep practicing all the time or else he will lose the language he has learned. He really works so hard. He is very inspiring. It is hard to watch him struggle with simple tasks but eventually with time I know he will master them too. I just need more patience with him.

Joshua and I use to spank our kids when they were being stubborn and insubordinate. Our daughter being a very strong willed little girl had her fair share. We use to spank Gabriel as well because we didn't understand that he was having a hard time doing something not because he didn't want to but because he actually could not do it. We use to discipline him for that. After his diagnosis we saw how unfair our punishments were to our son, and we decided that spanking, and yelling at our kids was no longer an option for us. Gabriel didn't understand the language we were using so yelling at him did not make it better. We no longer spank, and try very hard not to yell... which can be difficult with all the other stress in our lives and when the kids are just fighting with each other. We are not perfect, nor do I believe for a second that my parenting style is the one and only. What I have learned from this is that parenting styles need to be tailored to each child. I cannot parent my daughter the same way I parent my son because they are two completely different people and require two different styles. My daughter needs a firmer hand than my son. I just hope that people understand that their children are different people and just because one style works for one doesn't mean it will work for the other. Gabriel is deeply emotionally hurt when a voice is raised in his direction, and took a long time to come down from the emotionally turmoil of being spanked. My daughter on the other hand was flabbergasted that someone dared to raise a voice at her and sat in anger after receiving a spanking. I found sitting and talking with my daughter and understanding why she was acting out and correcting the negative behavior that way far more beneficial. With Gabe because he lacks the words I try and understand what might be going on around him or within him as to why he acting in a negative way and try to remove that stressor from his environment. Sometimes he just needs to be put in his room with the door closed and left alone to quietly play and he was unable to come to that conclusion on his own.

I just want my kids to respect me. I think that's all any parents wants. Some kids need a spanking, some kids just need to be talked too. I carry a lot of guilt about how I disciplined our son prior to his diagnosis because I realized he was disciplined for something he could not help and that was very unfair to him.

I think I will end this on a positive note. I am going to look into swimming lessons for Gabriel and see if he able to do it. He loves swimming so hopefully this is a sport he will be able to take part in!

-Jamie

Meetings, Paperwork, Acceptance

I don't cry everyday like I use. I called our social working, have been filling out tons of forms and setting up various meetings, with daycare, speech, and also to meet our new social worker. Today I met with the daycare to go over Gabe's care plan because he is "special needs" and what his progress has been over the summer and where he needs help. I nearly broke down in the car on my drive there, am I really driving to an appointment about Gabe? He really does have autism, it kind of just hit me, this is my life now meetings and paperwork educating everyone on my son and his needs. It seems odd to think that I haven't yet accepted the fact that he has autism yet, because everyday I am faced with one of the many appointments or paperwork that i need to deal with for him. As I was at the daycare meeting educating them on Gabriel, i nearly broke down several times, describing his odds behaviors and difficulties making sure they understand that he has limited understanding of language, what is normal for potty training an autistic child. Every word that comes out my mouth I am slowly realizing that my child is different from other kids, he does not learn the same, he cognitively is not the same, and may never be the same as other kids. They asked me after the meeting how we are dealing with all of this and i just couldn't hold it in anymore, it's be hard to accept. I just broke down and I feel bad cause I don't want their sympathy. I don't like crying in front of people, i don't like to cry. It just is at that point where I can't control the tears, I can't fight them anymore. I apologized, even though there was no need too, they understand they are mothers too. It is my child, when you look at that little person you dream about who they will be, what they will do, who they will marry. I feel like autism has taken that from me, I do not know what he is capable of anymore. Will he get married? Will he have a normal life and live on his own? Or will he live with me for his whole life? Will he have a job? I don't know anymore, I don't know what is realistic anymore.

The older he gets the more transparent it is becoming that something is wrong. I took my older daughter Elli to her swimming lessons she is 5 1/2 and Gabe is 3 1/2. There was an elderly lady there who said that she babysat kids her whole life and misses it so much, and then asked me if Gabe was 2. I said no, he is 3 1/2, she was utterly shocked, she could not contain her surprised expression. I felt awkward about the encounter and said, "I know his speech is severely delayed.", she said, "oh he is a boy, the older one always talks for him that's why." I said no he is autistic... and she clearly had no idea what that meant. I just walked away, i couldn't take the time to explain it to her, not without crying. It bothered me, it bothered me that his autism is noticeable, it makes me realize this isn't going away, he isn't going to grow out of this. He is autistic and all of the challenges that come with that we have to face now. While I was out the other day with my daughter getting her hair cut, i overheard a woman talking about her daughter that attended a small school, she was trying to get sympathy because the class size was so small, and all the girls were so catty. She said, " there are only 7 girls in the class, and one is autistic so its more like 6." I was utterly shocked, i could not believe that i just heard such an ignorant statement. I couldn't even respond or anything it took everything for me not to burst into tears, is this really what my son is going to have to face? How do i protect him from these kinds of people in the world, whose words are so hurtful. He never had a choice to be this way, why does he now have to deal with the ignorance of our world.

Eventually I will get stronger and more educated about my son. Just need to remember patience is key. He isn't acting out or being a brat, he just can't tell you why he doesn't want to do that, he doesn't understand that he has to stop playing to go in the car... and I don't know when or if he will ever understand.

Autism

So my son Gabriel was diagnosed with Autism this last Thursday. He turned 3 in February and it was suggested to us last fall to get him assessed for autism by his speech therapist.

After 3 specialists in area's of autism assessed him individually. One was a speech pathologist, one a psychologist, and the other a pediatrician, they came together with their results and all agreed in each of their areas of specialties that Gabriel was displaying the symptoms of autism, in each field. His understanding of language is about the same as an one year old to about an 18 month old. His use of language is at about a 2 year old level. Meaning he doesn't understand a lot of words that he uses.

Honestly I was a bit shocked with the results of the whole thing because I was denial about it, thinking that he only had delayed speech. The speech pathologist did agree he has delayed speech but the other behaviors he displayed along with that were not consistent with ONLY delayed speech but as autism. The psychologist talked about his cognitive abilities being delayed as well around a 2 year old level, but he was advanced in areas of puzzles which was interesting. The pediatrician talked about a lot of the behaviors that Gabriel does his need to walk around the pool multiple times before getting in, and his anxiety in new places, how he plays with his toys, and puts my hand on objects that he wants, all being autism. How he needs his seat belt done up a certain way, and only I can get him out of the car, and the red cup needs to have the red lid or else he can't use it, he can only a certain book at night, and his pillow needs to be in a certain spot, how he only likes to watch the wheels spin on cars and trains, and the propeller on the airplane. As I told the doctor these things and he assessed them and told me that these are unusual behaviors I could see it, I just didn't before he told me that these were consistent with autism. He just was really particular to me, but so is Joshua about a lot of things, so I guess I didn't really think about it much. There was a lot that was discussed in the hour long meeting, and a ton of his behaviors that made sense as being odd after he pointed it out to me.

The doctor said that he seemed to be a mild case of autism. He needs to be reassessed and monitored as he gets older to see what his needs are, the only thing that i know for sure is I am unsure how this will progress and affect him. I don't know how severe his autism will be in the future. As of right now they think he will need an aid in school with him, which was hard for me to accept. Him being "special needs" was hard for me to accept. I have so much paperwork to fill out and everyone telling me that there is lots of funding available for special needs children supposed to be the highlight of the trip, I honestly could care less about the funding, I don't even want it. I am having a hard time accepting the fact that my son is different then other children and he has to be taught to socialize, and taught to speak, and use his imagination because those things will not happen unless he is pushed to do them. He learns things completely differently then other kids. I worry that he will be made fun of in school because he is special needs. I don't know if he will be able to take part in organized sports. So much in unknown to me right now, and I am in denial about a lot of it. Even now I look at him and think he can't be special needs, he isn't autistic. Then I look at all my paperwork I don't want to fill out, that I don't want to face and realize this is about to become my reality as much as I don't want it to be.

Joshua has been good about the whole thing, and was actually relieved to hear it was autism because that explained a lot of the weird behaviors he has. So he is happy with how the meeting went I guess. I know eventually I will come around, I am just having a hard time with it right now. I suppressed my tears during our meeting, and when I got home I had a good cry about it. I haven't really talked to anyone about it, I phoned my mom but ended up getting disconnected and I just didn't feel like talking about it anymore. Even now I still don't want to talk about it with my family. I still tear up a lot during the day when I think about Gabe and the whole thing. I know eventually that will go away. I know that i will eventually get use to this all and probably won't feel like crying all the time. Oh well just one day at a time..