About Me

I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Thursday, March 28, 2013

accceptance and updates

I haven't blogged in a while, and part of the reason for that is that I don't want to "jinx" anything, and the other part is that I have been doing a lot of thinking. 

Over the past month, I had Jacob's conference where we discussed what the plan will be for him for next year.  When I decided on the title of my blog, I felt odd that I included in the title "raising 3 boys with special needs". At that time Jacob was receiving speech therapy and Occupational therapy and was identified as a preschooler with special needs, so the title was certainly accurate, but in my heart it felt like an exaggeration.  To me, special needs meant more along the lines of David and Matthew, behavioral struggles, communication challenges and social challenges.   However, the addition of Jacob's "minor" needs at the time was still a stressor and still added to the crazy of my family- IEP's times 3, therapists times 3, extra monitoring of skills times 3.

Over the past month I have been coming to terms with the fact that Jacob's needs are not as minor as I had hoped.  This year he has been a child receiving special education, speech and occupational therapy services in a co-taught kindergarten class.  This means that he is one of 5 children who are supported by a special education teacher for 2.5 hours of his kindergarten day, and a teacher's aide for the remainder of the day.  His assignments in class are modified to meet his needs, and his learning is occurring at a slower than average pace. 

For his IEP for next year, he is being recommended for the same type of setting.  He has not mastered kindergarten skills at this point and still struggles when forming letters, recognizing letters in many circumstances, counting, and clearly communicating his thoughts.  Jacob will be 7 in November and going into 1st grade.  I already gave him the benefit of an extra year of growing in preschool with the hopes that with time he would "catch up".  My biggest concern by far for Jacob is the fact that he is a very, very aware child.  He knows that his brothers have limitations, and I am concerned that he is becoming more and more aware of his own limitations.  He wants desperately to make books, and to write down his thoughts, and all of the practice he is doing will only help his skills improve, but it is all hard for him.  For some reason he has not yet created a visual model in his head for each of the letters.  He has not yet found a way to commit to memory the sounds of each letter.  Without doing these things, it is going to be very, very hard for him to move forward. 

The amount of writing in first grade gets more and more intense.  As work gets more intense, I am worried that Jacob will become more aware of his limitations.  Jacob is a child who thrives on knowledge. He loves science and being creative.  His natural curiousity will hopefully keep him thriving in enough areas of school so that his self esteem stays high.  He can take a box and create the most amazing sculptures.  He has used a huge box that we have right now and used it to make a billboard, and a slide and just continues to create with it. 

I know that Jacob will do well, and that he is in a school environment that is amazingly supportive, however, the reality of having three boys who will have some levels of struggle throughout their school careers is a challenge.  On top of that, there seems to be no real identifiable reason yet for Jacob's struggles.  The thought is that he has some form of auditory processing disorder but this can't be tested for until he is at least 7 and with his current delays, likely older than that.  In addition, he is struggling with motor planning issues which are apparent when he is told to move his body a certain way.  He can hip hop dance better than your average 6 year old and can flip and twist in amazingly complex ways.  He can't hop on command or move his body in other ways upon command.  This is a major part of why he struggles to form letters and numbers.  Your brain has to tell your body to move a certain way to write and his brain and his body just don't seem to communicate well upon demand.

My hope is that with summer school and some tutoring Jacob will continue to gain skills at his own pace.  My goal is to keep him feeling confident and happy and that this will help him to continue to blaze his own path. 

Matthew is thriving more than he has in almost a year.  We have found a child psychiatrist who listens to Matthew and to me!  He is trying medications we haven't tried and we are finding success!  He is slowly adjusting medications and forming a relationship with Matthew that is allowing Matthew to be a partner in his care. Matthew's awareness of his own body is becoming more and more clear as he is feeling better.  His teacher is supporting him in a way that I have not seen for him in a while. His successes are cheered and supported and his struggles are acknowledged but not harped on!

David is going through a rough period with seizures right now, but even he is becoming more self aware.  He had a rough behavior time recently and then this past week he has been having seizures are night but his behavior has improved.  He is telling me in the morning that he didn't sleep well, which is sad to hear, but makes me aware that he is recognizing more about himself than I ever thought possible and he is talking about how he is feeling which is a huge step!

We are heading into spring break with very limited plans!  My hope is that we will use this time to ride bikes, play outside and enjoy time together as a family. I know that in order for Matthew to feel success we will have to have a schedule for each day, so I am going to work on that this weekend! Here is to a rejuvenating spring break with my fabulous three boys!

Sunday, March 10, 2013

pocket full of crackers

Please share positive thoughts for Matthew and all of us.
He had a gigantic tantrum tonight about crackers, and looked very, very lost.  He kept wiggling his fingers and crying and screaming and just appeared very, very confused.

After the last 2.5 weeks of him being so "on", it was hard to see him struggling tonight.  He looked like such a scared, lost soul.

At the park he was again obsessing about smokers, and he screamed curses at a gentleman that asked him to move over to the right side of the bike path so that he could cross.  I was concerned to see Matthew's reactions to these 2 situations, but I hoped that he would keep it all together.  I didn't think he would tantrum again this quickly.  I was not ready to see him so lost.

I knew in my heart that the tantrums would return, but oh how I hoped that we had found his miracle drugs and had beat the demons.

The past 2.5 weeks were worth every minute of awesomeness, but it made tonights tantrum so hard to see.

Here is hoping that he will wake up tomorrow fresh and back on track.  Here is hoping that tonight was a hiccup and that we get a little bit more time with the Matthew full of laughter and calm.  Here is hoping, cause I am not ready for another battle.  I do not want the intensity of mental illness to return.  Please keep the demons at bay.

Monday, March 4, 2013

New Rules

 LIfe has changed, and I don't know what brought on the change.....I am working hard to simply keep up and learn to play by these new rules.

He's not obsessed with food right now, instead he is obsessed with the computer
Sure, he still talks about food a LOT, but the first thing he is doing each morning isn't eating everything in sight.  He isn't sneaking food in the evenings.  This morning I don't think he even remembered to eat breakfast.  I don't know for sure, because there are years and years of history of him and I struggling over whether he ate breakfast or not, but I am leaning towards believing that he may not have eaten a bowl of cereal.   I offered him fruit and he ate an applesauce and said he was full.

Full, a word I didn't know Matthew knew.  Full......Matthew Bloom was full.

He isn't tantruming instead he sobs.
So many things that would have  tossed him into an immediate tantrum  in the past now don't have him tantrumming but instead he is sobbing.  One of the behaviors that he has that has not changed right now is he is still bothering Jacob a lot.  When I correct him, and have him take a break, he is quick to take the break, but equally as quick to sob. 

Matthew has never, ever been a crier.  It was as if it was just an emotion he did not have.
Now I am left wondering is it the med change? a change in Matthew organically? something to worry about? growth on his part?  What I know is that his sobbing is heartbreakingly sad.

 He is wetting the bed, but may be sleeping a little better.
In the past, he would wake me up to tell me he wet the bed and upon inspection the bed was totally dry, but he was just using it as an excuse to take a middle of the night shower.   Over the past few nights he has actually been wetting the bed, but then once out of the shower he goes back to sleep.

I am a very, very sound sleeper, so I can get up, change his sheets and go right back into a deep sleep. Typically over the past year, he would have gotten up, showered, and gone down and eaten a smorgasbord.  Currently, he is up, showers, wants to be tucked back in and goes back to sleep.  I am not loving the laundry that comes with the bed wetting, but it sure beats washing what in the past had been actually clean sheets that he lied about wetting.

He is more connected and wants more connection.
This is a positive- I can talk to him, he can talk to me and in many ways he is there to talk back and connect to.  Unfortunately this means he wants a connection all the time.  
The car is the place that David , Jacob and I like to have some quiet.  We can listen to the radio and drive for hours and speak very little, each lost in our own thoughts.  Matthew, who loves music more than anyone else I know, has to have a running commentary about everything he sees in the car.  This is not so new.  What is new, is he wants me to talk back about it.  To have a full conversation about each bus we pass, each chimney we see and each car we drive by.  He keeps accusing me of being angry if I don't have a cheery response for everything he sees.

I am enjoying that he wants my connection.  I am enjoying that he wants to be closer, however, it is hard to be close when someone accuses you of being angry when you are not angry, and it is exhausting to talk about everything you pass as you drive.....try it.......it is exhausting.

Other interesting changes:
his body odor which had been so intense, is gone.   Nothing except for his mood and some medication has changed, but my thought is that he was living on such high alert before that he was constantly perspiring.  I assumed he had been forgetting to use his deoderant.  Now I am sad to learn that he may have been having such an intense physical reaction to life.

He has more phobias.  Yesterday he was petrified to go near the garbage can at Temple.  He was truly anxious at having to sit near a garbage can, and threw his stuff away from a large distance so he didnt have to be too close.

I will take any life that we can have that does not involve aggression.  I can learn to live with anything else, as long as we are all safe.  I hate to see my boy anxious, but I love to see him more connected.  I hate to see him obsessed with the computer 24/7 and watching the same few seconds of a video, but it sure beats the food obsession we have lived with for 10 years.

He cannot change or at least cannot change quickly.  I have to adjust to this new normal, and I will because it makes family life easier.  I am hopeful that we get to live like this long enough for me to adjust, because there is a calm and trusting atmosphere in my house that we have not had for a while.  While Jacob is still worried around Matthew, each day that goes by that Matthew does not act aggressively is a day that Jacob hopefully learns he is safe in our house.