So its been awhile since I last wrote. Things have been crazy busy over here. Lots of teachers and doctors appointments and whatnot. One thing that has been on my mind is how severe my oldest daughters fits have become. She starts when I tell her one of her teachers is coming over. She can’t handle the demand of ABA anymore, its been about 3 months, and she just doesn’t like it anymore. I don’t blame her. I couldn’t sit in a chair for 5 hours either. I brought my concerns to the lead teacher about how her fits are becoming longer and longer and the crying is worse and worse. I didn’t really get anywhere though. I don’t know if I thought there were a magic answer, but they just think she will grow out of it and to just ignore the behavior, unfortunately I don’t agree with that. I know my daughter can be stubborn, but the way she acts when she has a fit shows me it isn’t her being stubborn but just a major hatred for what they are making her do. I decided to look around to the other service organizations that are around our area to see if maybe there is a better fit for her. I am still not sure if that is going to be the answer. I feel so bad for putting my daughter through what I see as hell for her but without these services things could reverse BIG time. I am hearing from some family members of mine that the services may be doing more damage than good and that some things they are asking of my daughter are ahead of her. It is very tough having children on the spectrum and not having too much family support. Things are stressful and challenging ALL the time. I can barely get the girls out of the house easily anymore, they are like stuck in this house of an environment and don’t want to leave and I think they are very unhappy. It makes me sad to say that too, so needless to say there isn’t much thinking going on in my brain today, or at all!!haha
This week has just been awful for my girls. It is like they woke up on the wrong side of the bed EVERYDAY! The stress of having both children on the spectrum and the services they need as well as trying to keep a job has really gotten the best of me this week. I am not sure if they are sensing my stress or they are having their own issues I am not sure about. My oldest daughter usually doesn’t have horrible horrible fits but this week all she seems to do is have the worse fits and I do not know how to deal with them. She wakes up every morning and while she eats her breakfast she screams and cries and then rolls around the floor screaming. I try to get her to do anything, get dressed, go out to the car, and she refuses. Her therapists come over and she is just awful, unable to follow simple directions she usually can, or gets so upset she vomits. How does one handle these outbursts without having a meltdown themselves? The stress of literally having your child cry for 8 hours straight is unbearable. I can’t look at my child without wanting to cry or eventually I just want to scream at her but I never do since that just makes the situation worse. My younger daughter takes a lot of cues from her sister so on top of my oldest crying my youngest is chiming in too! So then I have two children freaking out. The ironic thing is that this starts so randomly there is never any demands put on my daughter to make her start to meltdown.
The stress of a crazy week made me cry the entire night last night. I felt like I am not able to handle all the struggles that come with having children on the spectrum. I really felt like running away. I know that wouldn’t help anyone at all, but I just couldn’t handle the feelings I had. I’ve always been told I have the patience of a saint, well know I am really questioning that. I cannot handle anything. My family went on our first family vacation last weekend and our camera broke, so the photos we had on a disposable camera didn’t come out, I went nuts. I cried over blurry photos, talk about nuts! I cry on a drop of a hat now because I can’t handle the emotions like I once was able to do, no I am not pregnant! I try to do little things for myself so that I can re-group and come back to my kids level-headed, but it isn’t working.
I don’t think anyone in my family know’s just how difficult this is for me. I keep as much as inside as I can but I am starting to lose it!! Some days are fine and I can handle the stress of the world other days I can’t handle the smallest thing.
“Stress is not what happens to us. It’s our response TO what happens. And RESPONSE is something we can choose.”
I guess I just need to focus on the response and not the stress!
I have never really been a religious person but I read this and thought it was exactly how things in my life may need in order to help us.
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
Proverbs 3, 5-6
Since we have had many professionals in my home for a year now helping my oldest daughter, my younger daughter has been quietly looked at. My youngest was around 6 months old when her sister started services, so the teachers we’ve had here in our home have basically known my baby all her life! They have watched how she played and babbled, making sure she didn’t need any services too. Overall everyone was happy where she was developmentally. Yet as she grew certain milestones were not reached and the teachers decided that maybe they should evaluate her too just to see where she is developmentally. My husband and I agreed honestly thinking she would come out just fine. One week after my older daughter was diagnosed with PDD NOS we had an eval team come in to see where my younger daughter was. After about an hour of doing their test they showed me the numbers. She was doing great in her gross and fine motor skills, but her language and adaptive skills were very low. She qualified for services and we decided to go ahead and start her as well with just speech once a week. I was ok with just giving her some extra help to get her over the “hump” but didn’t realize the struggle of having yet another hour a week to give to a therapist. She started almost immediately with her speech therapy and we noticed right off the bat how difficult she was with the receptive piece of language. The therapist and I spoke and she suggested that we wait at least a month before we go get a developmental for her as well. She wanted to give my daughter who was only 17 months old the benefit of the doubt. So we waited and watched and didn’t see much of a change. When her 18 month appointment came around and the doctor asked me to fill out a MCHAT form I again thought she would pass with flying colors. After the doctor reviewed it she told me that my daughter showed red flags of autism and that she suggested a developmental eval ASAP. I walked out of that office devastated and feeling guilty. As much as I didn’t like the developmental pediatrician my oldest went to I decided to give her a call and see when her next available appointment was. I spoke with the receptionist who told me that I needed to fill out a ton of paperwork first before they were able to give me an appointment date. I never had to do that with my older daughter so I was aggravated. I said ok well when are you booking and she said December, ya ok I am NOT waiting 6 months for an appointment. So I called my daughters speech therapist and asked her if I could go through the neuro-psyc doctor they have through their program. She said she would gather all the paperwork and get things rolling, my appointment was for 3 weeks out. I could handle that, although I realized the closer we got to the appointment the less I slept at night. How was I going to manage two children with autism and work two jobs and still do EVERYTHING that needed to be done just to survive on top of teachers and programs? I was and still am VERY overwhelmed. 3 days before my daughter was to be seen I got a call from the doctor saying she had a scheduling issue and needed to postpone the appointment. I cried I was so stressed, all I wanted was to find out if my daughter had autism so I could just get things rolling for her. After figuring things out they gave us an appointment 4 days later. The morning of her appointment was the longest morning of my life. With my older daughter I really did expect the diagnosis since she wasn’t social, had major delays in multiple areas. Yet with my youngest she was social, as social as an 18 month old can be, she did pretend play, but our major issue was her aggression and lack of language growth. Whenever she needed it my daughter seemed to just bang her head up against the wall multiple times and extremely hard. It worried me and I couldn’t do anything to get her to stop it. The doctor brought us in to her office and basically immediately my daughter started to freak out and started hitting things. The doctor brought out some toys for her to play with while we talked. She asked me questions about everything, from the pregnancy, to delivery, to the first time she walked. I mean everything! I never went through anything like that with my older daughter. She asked me my concerns and why I was there and I explained everything to her. I brought her an ABC sheet of all the physical abuse my daughter had done to herself over the past few weeks and she then began to do the ADOS test with my little girl. As I sat there watching the doctor work with my daughter I began to feel so depressed and inadequate. I couldn’t wait till the end of the appointment. I just wanted to know. My mind was racing and I was slowly falling apart. Tears were in my eyes as I noticed certain things my daughter couldn’t do but shouldve been able to, or the frustration she felt and started to hit. I couldn’t take watching her. After 2 1/2 hours the eval was done and the doctor came back in the room to give me the results. Her face was very serious and I could tell the diagnosis was coming. I was so 50/50 that I really didn’t know if my daughter was going to get a diagnosis or not beforehand, but I knew now it was. She said that the head banging and hitting was stemming from frustration because my daughter was extremely smart but had zero language so expressing herself was causing all the aggression issues. She said that she wanted her to receive OT and PT since she wasn’t as coordinated as I thought and to begin ABA services. She said she really did believe that in a years time my daughter will be doing great. I thanked the doctor and off we went, back home to tell all the news. I cried and cried the whole way home. HOW CAN I HANDLE TWO CHILDREN WITH SPECIAL NEEDS? How do I do it all? I couldn’t take the stress of things. After I finally calmed down I got home and explained everything to my mother who was watching my older one for me. She didn’t believe it and didn’t understand how both children could possibly be going through this. Well that didn’t help me much, I needed someone, anyone to feel the way that I did. Not even my husband believes the doctors are right, I felt/feel so alone.
It has been a week since the second diagnosis and things are still the same. My family, though they try, don’t completely understand how I am feeling and what I am dealing with. They focus on the fact that the girls are mild so they think that things are ok and not a big deal. No one understands that my life has completely changed, that things are never going to be easy and that some days the girls are super difficult and other days just slightly difficult. They don’t realize the struggles the girls really have with things that everyone takes for granted.
The biggest question that has kept me awake this week is how do I still try and work while having two children needing an intense amount of services. My work schedule is on Mon/Tues but now I need those days available to give my younger daughter services, but I still need to bring in money to help my husband who works his butt off in construction. Seriously how do mothers make it all work out? How are they able to work, have a clean house, give everything to their children/husband and still be alive at the end of the week? I feel so incapable. I want to do it all but I just don’t know how to make it all work without killing myself in the mean time! I am sure I am not the only mother with these questions!
Well as we stand today I have no idea what I am going to do with my job, when my younger daughter will be receiving services and what I am going to do about this crazy messy house that I have no motivation to clean!!!! 🙂
When my oldest daughter turned 15 months old I brought her to her normal check up. They asked how many words she spoke and I explain she didn’t talk at all. The doctor said well why don’t we wait until she is 18 months old before we do anything. That didn’t seem right to me. She had always been a quiet baby, and never did anything a normal baby did. She never cooed or babbled, there were no interactions with others, it was like she was a bump on a log. I told my doctor I was not waiting anymore. She gave me the information for Early Intervention and told me to call them and see what they can do. As soon as I got home I put a call in. They told me it would take a couple of weeks to process all the paperwork and health insurance paperwork. When I finally got the call to have their evaluation team come out I was very happy. At that point my daughter was almost 18 months old and nothing had changed so I wanted to know what was going on. The eval team came out and did a 1 1/2 hour evaluation which tested my daughters cognition, fine motor, gross motor, expressive and receptive language as well as other things. My daughter was developmentally of a 6 month old (the age of her sister). I was devastated. She obviously qualified for services and I told them to begin ASAP. She started seeing a developmental specialist two weeks later. Over time the DS decideded that my daughter needed a speech therapist as well since she wasn’t making as much progress as we had wanted to see. The speech therapist has helped my daughter with increasing her vocabulary, but as one part exceled others decreased like her gross motor skills.
In Early Intervention a student needs to be re-evaluated every 6 months to make sure they still need the services. In January of this year we needed to re-eval my daughter and found her to be in many parts up to speed so services for her stopped. Two weeks after services stopped my daughter completely stopped talking. She started regressing, unfortunately that wasn’t a long enough time for the eval team to come back in. So I needed to wait. Almost three months later I brought the eval team in and had them see if she qualified for services. After an hour of evaluating my daughter she came out developmentally as a 19 month old, but was actually a 28 month old. Her speech therapist suggested that I go get a developmental evaluation for a doctor to see if there was an underlying reason to her regression since that is not a normal thing to do. After waiting two weeks her developmental eval day was here. I was very nervous. We went in to see the doctor and of course I was told this doctor was able to diagnosis and was experienced. I walked into the room and sat down. My daughter was trying to play with the toys, but when the eval “started” nothing was going on. The doctor came in the room and started to ask me questions, I handed him the copies of evaluations from Early Intervention and stated my reasons behind bringing her. The doctor spoke to my daughter twice and then after 30 minutes decided she needed to she his partner because he was unable to determine anything. Well that pissed me off big time. I go thinking I am going to get somewhere and I end up backtracking! I had to wait an entire month to see his partner. When we got to that eval, which was only 15 minutes longer than the first eval (which if anyone knows these eval’s are usually 2 to 4 hours long) I was asked a few questions and the doctor tried to play with my daughter. The whole time I was being told by the doctor, well your daughter should be doing this or that, UMMM excuse me but the reason I’m here is BECAUSE SHE CAN’T. I was just so aggravated with the eval that I was not shocked when she said she does have PDD NOS and she will need more services and preschool when she turns 3. Ok well that was over with…so I thought. My daughter was diagnosed with a mild form of autism. There are different levels of autism and PDD NOS is the mildest form you could have. I immediately called her speech therapist to inform her of the diagnosis and to let her know we need to get the ball rolling on the other services she will need.
To stop and think now of all the things that happened, I am not sure I have really been able to come to terms with things. My oldest daughter is a special needs child that can struggle with her development for a long time to come, or she could be completely ok in a few years time. Autism is not something we can say oh follow this diet and she’ll be fine, or after these treatments things will be ok. It is something they struggle with forever. A family struggles with it together. The stress of having teachers after teachers at my house almost everyday working with my daughter is exhausting and frustrating. She is only 2 1/2 years old and has a full time job. What fun is that? I feel so helpless at times because I just want my children to grow as any other children do, but then I realize how special my daughter is and how I wouldnt change her for the world. I love her very much.
I am a young mother of two beautiful girls. Like any other mother my children are my world and I have and will forever do anything for them. I have had the normal challenges of motherhood like everyone else, but the tables turned this past May. My oldest daughter was diagnosed with PDD NOS, which is a mild form of autism, and the struggles that have come along with helping her developmentally has been exhausting. My younger daughter was just recently diagnosed with PDD NOS as well. I decided to make this blog so that I could write down our struggles and maybe help another person who is dealing with their own autism struggles.