Happy Birthday!

A. is five! It is hard to believe that it has been five years since the nurse put that little red headed baby in my arms. What a happy day that was. After my oldest son was born and years were spent trying to conceive, it was a wonderful surprise to find out my A was on the way! We celebrated with his brother who also had a recent birthday at a birthday bash at Fun Expedition!  Here are some photo's from the day!

The Birthday Boy!

Opening presents!

 

Life of the atypical parent....

Hi everyone, it's been a while. I am feeling out of sorts and have been that way for a while. There has been a lot going on with both of my children and I feel like I am being pulled in a million different directions. For some reason this is just a difficult time of year in many ways. There are so many days that I feel like I could just crawl in bed and stay there, but I don't have that option. Being a parent with special needs children is difficult any way you look at it. I have had the honor to meet so many great parents, parents who will do whatever it takes to make sure their kids are getting the things they need. But, it is overwhelming and you often feel like no one could possibly appreciate what you do. So do you want to know what it's like being a parent to children with special needs? Well, here is what it's like for me anyway!
1. Get up and drag yourself out of bed, rush to make sure that everyone gets where they need to be on time, even when one child decides to take all of his clothes off at the last minute and the other is refusing to leave the house without his "bad guy" transformer and at least three Superheroes and you can't find any of them....
2. Finally get one child on the bus and get the other one in the car, get stuck in the last minute rush, try to park in disabled parking spot only to find the ONLY two spots taken by someone who DOES NOT have a disabled tag or decal, and have to get tardy slip for being one tenth of a second late.
3. On the way out the door be stopped by someone (therapist, principal, other school personnel), telling you they need to discuss something with you.
4. Come home, get online to try to research the best possible therapy for your child's situation, find the greatest thing, google it and try to find therapist in your particular area, no luck...
5. Call doctor thinking she may be able to tell you something Google didn't..... find out, yes that is available, if you want to drive two hours.
6. Grab something unhealthy for lunch and then call all of the people who are expecting you to call them back....
7. Talk on the phone for what seems like hours...
8. Glance at the clock and realize that it is almost time to go pick your child up, rush out, stop by post office or grocery store as fast as you can.
9.Fight the after school traffic, don't even bother trying for disabled parking as they are all blocked anyway....
10. Pick up child, talk to teacher, rush home in time to get other child off of bus..... OR
11.Realize that child has 4:00 appointment in location that is 30 minutes away, call someone and beg them to get other child off bus for you.
12.Rush child to appointment arriving 15 minutes late, but that's okay, you are going to have to wait two hours before he can be seen anyway, getting home around 7:00.
13. Meals, baths, bed........

I guess I'm trying to be a little funny, but that is pretty close to the truth! No I don't want pity, I just want someone to recognize that what I do is difficult. No, I don't lay at home every day in front of the television. There are about a million more things I could add in there, and it varies each day. Sometimes I have to fit a appointment in for myself or for my oldest son as well. Some days I have meetings that I like to go to, some days the phone rings non-stop. It varies!! God bless all the parents who are out there quietly taking care of their children and fighting for them in a million different ways! We'll go into the fighting part in another blog! They are worth every minute! :)

My prayer for my children...

Please bless my children, keep them safe,
give them health and happiness.
Give the other children understanding,
and give them a few true friends.
Give their teachers wisdom,
and let them be kind.
Heal them lord,
but if that is not in your will;
Give me the strength and patience I need,
Let me be their advocate.
Help me to stand up to those who think they know more about my children,
when they really don't have a clue.
Most of all dear Lord,
let them realize how special they are.
Special not because of their disabilities,
but because you created them,
with a purpose.
Let them realize their gifts,
but most of all;
Give them happiness!

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Frustration...

This is not going to be a happy post. I am just very frustrated, and sometimes I am not even sure what I am frustrated with. It seems like nothing I can do is right, in my eyes or anyone's for that matter. I feel like I should be doing more for my kids, I feel guilty if I try to take a break. I even feel guilty for writing on this blog while they watch "Scooby Doo". It doesn't help to see posts on facebook and other places where parents put themselves out as being the "Mother of the Year". I guess with typically developing and special needs kids you will always have those parents who make you feel like you could do more. I have been told by a family member that I don't do enough, I should be in the floor with my children their every waking hour, maybe I should, but then I am confused when the same family member tells me that I spend "to much" time trying to get services for my kids, and that I shouldn't spend so much time thinking about their disabilities, or talking about them.

I just want to say.....I feel bad enough, there are things I want for my kids that I am just not able to get. A lot of things bother me right now that probably shouldn't, I am easily offended by things that probably shouldn't offend me.

I have had a lot happen in my life over the past 3 years. I don't really need to go into all of that, but I am going through a grieving process, multiple grieving processes actually. Maybe I am stuck, who knows, maybe I do need counseling. But, having people constantly tell me what I am doing is wrong, making me feel guilty for trying to take the occasional break, well that isn't making me feel any better.

I love my friends and family, I want a good relationship, but sometimes I feel so confused.

I know I am not the only mother who blogs about her kids, I know I am not the only mother who writes things on facebook to try to raise awareness. So, why are people trying to make me feel like a bad person, why do people act like I should be ashamed of my son's Autism diagnosis and hide it.

I am very proud of my boy, the fact that he is on the spectrum does not make me any less proud. Actually I feel more joy at his achievements than I would if he were a typically developing child.

Finally, my biggest pet peeve....STOP telling me that "A" isn't "autistic enough" that because he is so high functioning and he is so smart that I should let people think everything is okay, that he is some sort of child prodigy. He is smart, but there are issues, that is why I take him to doctor's and multiple therapy's. That is why I spend my nights online looking for the latest in treatments, even special diets. I tell people to raise awareness, autism isn't always what it appears to be, it isn't always "rain man" or a child in the corner banging his head into the wall. I suspect and I have seen that there are many children (and adults) out there, smart children, who are going undiagnosed. Children who struggle with social skills, smart people who lock them selves away, who have to be home schooled or who are miserable in regular school, adults who have a hard time holding down a job, who spend their lives on their computers because they don't have the social skills to go out into the world. Young children with whom intervention may make a world of difference in their lives as adolescents and adults.

So if you don't like the way I do things, then don't try to make me feel bad, you don't have to read my blog or be my friend on facebook. I struggle every day. I will do what I have to do, if you don't agree with my methods then I am sorry. Especially don't criticise if you have never dealt with what I am dealing with.....

Here is some information about families dealing with Autism, and what YOU can do to help.

Autism and Imagination...

I have been told by many professionals that because "A" has autism he can't use his imagination. I have to disagree! At least this don't seem to be the case with "A".

Just a little while ago he was sitting on the table, you probably think it is strange that I let my son sit in the middle of the table. We do a lot of strange, but fun things at my house! Anyway, he was sitting on the table, the table was his ship and he was a viking. He was spinning a big tale, sitting there with his viking hat on. He was fighting pirates and dragons. He had to get in a airplane to get off the ship, because "mommy I can't get off in the water." If that isn't imagination what is it! Maybe it is because he is "high functioning?"

I love this quirky, sweet, creative moments! I think about them when I am dealing with a big meltdown, and we have been having quite of few of those lately. Thanks to medication issues and school being out for almost two weeks due to snow! Even though "A" likes to be home, he misses his routine and schedule!

A "IEP" for Christmas...

I am sorry I've not kept up with this blog. I will do better. Tomorrow we have our first IEP meeting. I'm nervous, but excited that "A" will be receiving some intervention, AT SCHOOL! Last year at this time I was fighting for that, remember this poem?

We had Christmas pictures made, "A" did very well. Usually sitting for pictures is difficult for him, but he seemed to enjoy it this time, we had a really good photographer!